tke TRANSCRIPT OF PROCEEDINGS NATIONAL COMMISSION ON ACQUIRED IMMUNE DEFICIENCY SYNDROME xk k&k & San Francisco, California Pages 1 thru 205 | Volume 2 . May 17, 1991 MILLER REPORTING COMPANY, INC. 507 © Street, N.E. Washington, D.C. 20002 546-6666 =a! 10 17 12 13 14 15 16 17 18 19 20 21 22 23 24 25 NATIONAL COMMISSION ON AIDS HEARINGS VOLUME II San Francisco Hilton Hotel 333 O'Farrell Street San Francisco, California Friday, May 17, 1991 REPORTER: FRANCES L. RHUDY Jim Higgins and Associates San Francisco, California MILLER REPORTING COMPANY 507 C Street, N. E. Washington, D. C. 20002 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 NATIONAL COMMISSION ON AIDS HEARINGS FRIDAY, MAY 17, 1991 VOLUME II The hearing was convened, pursuant’ to notice, at 8:30 a.m., in Plaza Room A, San Francisco Hilton Hotel, 333 O'Farrell Street, San Francisco, California, JUNE E. OSBORN, M. D., Chairman, presiding. MEMBERS PRESENT: JAMES R. ALLEN SCOTT ALLEN THOMAS BRANDT MAUREEN BYRNES HARLON L. DALTON, ESQ. EUNICE DIAZ, M.S., M.P.H. DONALD S. GOLDMAN, ESQ. LARRY KESSLER CHARLES KONIGSBERG, M.D., M.P.H. BELINDA MASON IRWIN PERNICK MICHAEL PETERSON PATRICIA SOSA MILLER «REPORTING COMPANY 507 C Street, N. E. Washington, D. C. 20002 1 ENDEX 2 AGENDA: PAGE 3 Opening Remarks -- June E. Osborne, M. D., Chair 4 4 | Remarks ~- Paul Kawata 4 5 Introduction: Historical Perspective Gen Tinuma 10 6 Tessie Guillermo 15 Suki Ports 23 7 Roundtable Discussion: Impact of HIV Disease Among 8 Asians, Asian Americans and Pacific Islanders Moderator: Jane Po 38 9 Kiki Ching 38 Lei Chou 45 10 Billy Gill 48 Sharon Lim-Hing 50 11 Martin Hiraga 54 Sinh Nguyen 63 12 Robby Robison 69 Merina Sapolu 73 13 Paul Shimazaki 77 . Velma Yemota 78 tO 14 Roundtable Discussion: Provision of Services 15 Moderator: Fernando Chang-Muy 84 Wayne Antkowiak 85 16 Kerrily Kitano 94 Joanna Omi 99 17 Lori Lee 107 Tony Nguyen 112 18 Nga Nguyen 116 Jaime Geaga 119 19 Dorothy Wong 122 Dean Goishi 126 90 John Manzon 133 21 Public Comment 142 22 | Commission Business 166 23 24 25 Ney MILLER REPORTING COMPANY 507 C Street, N. E. Washington, D. C. 20002 ee 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 PROCEEDINGS 8:50 a.m. DR. OSBORN: Good morning. I want to apologize for our delayed start. I think a number of the commissioners have had trouble. Yesterday breakfast went just fine and I think everybody scheduled themselves that way. But I think very shortly now the remaining commissioners will be here. And we very much appreciate all of you being patient with us. I want to limit my remarks simply to a welcome. We are looking forward to hearing from you today and learning from you the important messages that you have for us about Asian, Asian American and Pacific Islander Communities. In order to start us off Paul Kawata has agreed to make some opening remarks. Paul, welcome. MR. KAWATA: On behalf of America's model minorities I want to thank the Commission for taking the opportunity for meeting with us. We want to acknowledge the critical contribution that you can make in the fight against AIDS for Asian Pacific Islanders. My name is Paul Akio Kawata. I ama third generation Japanese American. That means I am a sansei. I am the grandson of immigrants. My family came to the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 United States in the early 1900s. My mother was a housegirl for the Canon Towel family in Beverly Hills. My father was an orphan. They lived the typical life of immigrant children. They were undereducated. They were poor. But they had a dream. Unfortunately, on May 3, 1942, Gen. J. L. DeWitt signed an executive order for the evacuation of Japanese immigrants and American citizens of Japanese descent. To be able to effectively describe the forced migration of my parents in less than 10 minutes would be impossible. And one thing that I always remember to all of us who do HIV related work who laugh about quarantine is to remember that it happened to my parents in this decade. The other part of my life is that I ama gay man. And for me to choose between being an Asian Pacific Islander and a gay man is impossible. The two factors are inextricably intertwined in who I am as a human being. However, it is important to note that within the gay community I am often referred to as rice. The bars that I attend are called rice bars and that the men who love me are called rice queen. I cannot begin to give you the words of what it means to be reduced to a food 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 group. We are here before you as a group of Asian Pacific Islanders. I think it is important to note as you look around this table that we are not a monolithic community. The word Asian Pacific Islander is a convenient term that lumps a group of diverse people together. In America we are called minorities. But it is important to note that in the world there are more of us than there are of you. Sometimes we get lumped because of the color of our skin or the shape of our eyes. But we represent over 32 different major dialects, many parts of the country, many parts of the world with a diverse culture, perspective and values. We come together as a group of people sharing with you some of our culture and some of our perspectives recognizing that it will never be a complete snapshot or a complete picture. As model minorities we get to be the good colored folk. And what the good colored folk usually means is that we don't misbehave. Well, maybe we may misbehave just a little bit today. Okay? And part of talking about misbehaving and talking about being a model minority is that we get to 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 present a series of recommendations to you. I know that several of you received in the mail a series of 11 recommendations that were developed by people. And since I was not involved in the development process I can say to you that they are great recommendations. And I strongly encourage the Commission to review and consider them as they put together final reports. I also know the political reality of trying to put forth 11 recommendations. So, what I would like to do is highlight three cf the critical ones from my perspective and in discussions that I have had with several of my counterparts here at the table. Recommendation No. 1, the Center for Disease Control, state and local health departments revise their surveillance and reporting practices to provide data regarding HIV and AIDS according to Asian and Pacific Islander ethnicity, mode of transmission, age, gender and year of immigration. The reason that this is critical was up until recently according to the CDC we were classified as other. For the first time we have the mode of being other than other. But the truth about it is that the umbrella of Asian Pacific Islander does not effectively represent 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 who we are as diverse communities. And your support in working with CDC to find that specific recommendation will be critical to our prevention and educational effort. Recommendation No. 3, that federal, state and local governments funding of HIV prevention and education targeted for Asian and Pacific Islander communities be increased and that specific requests for proposals, grants and contract for community based organizations in Asian and Pacific Islander communities. In strictly percentage terms Asian Pacific Islanders represent the largest increase of new HIV related infections. What that means is that the primary prevention agenda is still a critical component of who we are aS a community. And your support in helping us to further our primary prevention agenda is critical to our saving our people. And, finally, recommendation No. 8, that HIV serum positive status be eliminated as a basis for exclusion and mandatory HIV testing to be ended for immigrants and refugees under the federal immigration law. I want to applaud the Commission's early stance in taking a position on this. I am sure that you are more than aware that because of your position we were able to shift the way the government looked at this particular provision. 10 11 12 13 14 | 15 16 17 18 19 20 21 22 23 24 25 But I want to caution you not to compromise travel for immigration. It is very, very easy for us to say, well, we got travel so we can forget about immigration. We cannot let that happen. We also cannot let happen the Justice Department to decide good public health policy. And I know that you know that. And I know that you are supportive. And so, I just want to reiterate your commitment. I want to ask you to go on and follow the distance on this particular recommendation. We are a group of diverse people coming to you today. At some level I feel very inadequate being here among these people. I am honored to be here because these are the people who are working on the front lines who are making a difference every day in the trenches. Theirs is the difference that is going to save the lives. I salute them and their courage. And on behalf of Japanese Americans I say alti gato gomaise. DR. OSBORN: Thank you, Paul. A very moving and succinct opening. The first panel -- Gen Tinuma, Tessie Guillermo and Suki Ports -- will in sequence give an introduction and historical perspective. And I invite you to go, I guess, in that order. // /f 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 10 INTRODUCTION: HISTORICAL PERSPECTIVE Gen Tinuma Tessie Guillermo Suki Ports MR. IINUMA: Good morning. Aloha kKakahiaka. Greetings from Hawaii. I am going to sit back a little bit. This is a little too formal for me. For those of you who don't know Hawaii is in the middle of the Pacific and oftentimes is recognized as a vacation resort. Let me give you a little tour of the islands. Hawaii is I would say 2500 miles away from the West Coast, 5000 miles away from decision making in Washington, D. C., and usually not a part of the decision making process nationally in terms of API issues. Hawaii is eight islands; seven of which are inhabited by a little more than one million people. We come from a very diverse background -- mostly immigrants -- mostly contract workers. I am the third generation -- like Paul. I am a sansei, an American of Japanese ancestry. I come here as a representative for people who don't have a voice. As you look around this table, as I look at you, I don't see any representation. Someone who looks like me -- I don't see representation from the people that I work and live and play and have grown up with. Pacific Islanders are not + 4 et tah, 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 11 visible. In fact, Pacific Islanders for the most part are invisible. As I look at all of us here today I! see that we are very multicultural and diverse. And it is hard for me to not be moved by the enormous weight upon my shoulders to be able to try to articulate from the Hawaiian perspective how much a part we are of this movement of Asian and Pacific Islanders. The community, like I say, is very diverse. Let me just give you a breakdown of ethnicity. Twenty- three percent are Japanese. Eleven point three percent are Filipino. Four point eight percent are Chinese. One point one percent are Korean. Point six percent are Samoans. Hawaiian people are one percent. As you look at that it says that -- well, let me give you a little more. Black Americans are 2 percent. Puerto Ricans are 0.3 percent. We have a mixed population that comes somewhere around 30 percent. Nineteen point one percent are Hawaiian. And what that tells you is that 76.6 percent of our people are people of color. Sixty-two percent are Asian and Pacific Islanders. And if we include that mixed population, that Asian and Pacific Islander community may be as large as 74 percent of our population. By population percentage we have the largest Asian and 10 14 12 13 14 15 16 17 18 19 20 21 22 23 24 25 12 Pacific Islander population in all the states. Hawaii has been called the melting pot of the Pacific. And you can see why. What these figures don't illustrate is that we have a growing Indochinese population. We have a Hispanic population coming to the Islands. It is very telling that we have other things coming to the Islands too. Infectious disease is already there. The statistics are also very telling too. It shows that Caucasians are the minority in our community. And yet, we are oftentimes used -- use a bigger minority. Minority in that sense however -~ or a majority for us in terms of population base -- doesn't really mean that we have the majority in decision making or ability to control our own destiny. And our lack of resources in many ways is an indication of that. Hawaii has had a history and a legacy of what we consider to be -- and many people consider to be, especially the Hawaiian people -- colonization. As started in the 1800s with the bringing of Capt. Cook. And what he brought was not only his sailors but also infectious disease that nearly wiped out the population of Hawaii. It had a population very close to a million people. And in 1875 it went down to as low as 50,000 people. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 13 But I don't want to leave you with all these statistics and numbers. I don't think that is the issue. The issue for Hawaii is that HIV is there and we have a real problem with the particular disease that has very much similarities to other diseases that Hawaii has faced in the past. Some of the issues that we have are infrastructure or the lack of it. I will give you an example. On the neighbor islands where 20 percent of our population resides there are no public transportation systems. There are no detox facilities. We have one methadone treatment facility in the entire state. And it is located on Oahu. And what that means is that if a person is seeking some kind of specialized health care they will all have to travel to Oahu for that or even to the mainland. And what that means is that is extremely -- at a lot of cost -- at very high cost and being away from loved ones and their support systems in a very strange place -- an unfamiliar place. Lack of resources in terms of materials. I can't even speak to it. It is almost appalling when you think about it. That in Hawaii with this large Asian population and large Pacific Islander population there is a very noticeable lack of resources in terms of bilingual 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 14 and bicultural that had been developed there. Other people, other states look to us for these particular resources and we are not able to produce them. And it may be that as we look at the infrastructure or the structure that is set up in terms of the service providers it is very telling. Most of the HIV Service provision is done by people other than Asian and Pacific Islanders. Primarily Caucasian. Very few Asian or Pacific Islanders sit on boards of directors, advisory groups, are in the leadership positions. To be able to outreach to individuals who are HIV infected and who have a local background. I would like to leave you with a few thoughts. And that is that there is a real need for Hawaii to be a part of planning. We need to be a part of our destiny and to be able to have a voice at the national level. We would like to be not thought of as a vacation destination, only for play or beautiful beaches. But think of it as a potential reservoir for disease. As I said earlier, I can't speak for my counterparts in Hawaii. The leis that I wear are a reminder for me that there are so many people there depending on me to be their voice. ————————— 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 15 We are in the middle of the Pacific. Our counterparts -- our neighbor island communities that are part of the Pacific Ocean that span thousands and thousands of miles and islands look to us for help, look to you for help. I trust that these kinds of situations where we are able to dialog with you on a personal basis would be helpful. I hope that you can hear us. You can see us. You will be able to do something for us. When you look at me please look at me not only as an American of Japanese ancestry sitting here but look at me as a multicultural person trying to be the voice of a number of different cultures in Hawaii. Thank you very much. DR. OSBORN: Thank you. Tessie? MS. GUILLERMO: Good morning. My name is Tessie Guillermo. I am the executive director of the Asian American Health Forum which is based here in San Francisco. We are a national organization focused on health status improvements for the Asian Pacific Islander community in the United States. My responsibility here today is to set the general stage or give an overall perspective for the following presentations and the discussions that you will be having subsequent to my presentation. 10 11 12 13 14 15 16 17 18 19 20 | 21 22 23 24 25 16 Paul referred to us as the model minority. And I am sure you are all very familiar now with that myth. I am going to talk a little bit about our model of health for Asian Pacific Islanders as a model of health. There is general, I guess, misunderstanding about that. Some of the things that we often hear about Asian Pacific Islanders is that we all live to be very old, that we don't get cancer, that we somehow magically overcome hypertension and its problems, that we are immune from AIDS and, in short, live happy, healthy, productive lives. There are some elements of truth in that myth. We do have longer life expectancy. We do have in some groups lower infant mortality than the general population. And we have the highest minority representation in medical schools. That all sounds very good. But there is something wrong with this picture obviously. Their aggregation of data under the rubric of Asian Pacific Islander masks a number of things. The paucity of data that leads to these conclusions masks a number of things. Proportional sampling negates Asian and Pacific Islander clustering. It negates our ethnic diversity. And it is skewed towards the more established groups among the Asian and Pacific Islander minority 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 17 group. The other thing that this doesn't show is that comparisons of health status are always made in terms of white majority health problems. Many Asian and Pacific Islander health problems are not of the same category. Additionally, the perpetuation of our good health status is conditional. And it doesn't take into consideration our quality of life regardless of the fact that we may live longer. These conditions that I spoke of have maybe existed in the past but currently there are changing conditions. There is a changing paradigm. We are going through a period of rapid and increased immigration of indigents from our home countries, of pensioners from our home countries. The changes though however go beyond demographics. They must be analyzed in context of United States societal conditions. Asians have been in the past more acceptable, I think, to a large majority of the population here. We don't misbehave -- as Paul said. At least that is what most people think. However, now, because of the increased immigration, the increased visibility of our communities there is a rise of anti- Asian sentiment and anti-Pacific Islander sentiment. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 18 There is a rise of racism against our communities. A lot of misunderstanding about what we are doing here and why we are here. The present United States societal, economic and political environment is not conducive to our communities' ability to establish ourselves and to improve our wellbeing. So, those conditions are changing. We will not be able to perpetuate our good health status, perpetuate our relative economic stability in the light of these conditions. A little bit about our health status. We don't have much information about it. So, what we have to do is we have to look at socioeconomic information as a surrogate for what our health status is. As Paul said, we are diverse in ethnicity. There are 43 different ethnic groups that are represented by the Asian Pacific Islander category with a multitude of languages and dialects. And we don't understand each other's dialect or language even though we may come from the same country. We are largely immigrant. An average of 65 percent immigrant population amongst Asian and Pacific Islanders. Largely non-English speaking. We are employed primarily in service jobs -- 24 percent. But we are also employed in managerial positions. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 19 We are bipolar in education. The differences are 25 percent and 79 percent respectively have no high school education and have college education. We are bipolar in economic status. We have the highest percentage of people in poverty status in the United States. And we also have a relative high proportion of our communities that have fairly good economic status. The implications of all of these statistics have a lot to do with our ability to access programs and services that we may need as people of color in the United States -- particularly in relationship to the fact that there is a lack of data, the misunderstanding that there are sufficient numbers of service providers to impact our population and the fact that we are diverse and have language and cultural differences that impede our ability to access services. I have spoken about the lack of data. But just to give you an example, California and Hawaii are alone amongst all the states that collect data for Asian Pacific Islanders and break that down into ethnicity. Everybody else aggregates us as either Asian and Pacific Islander or as other. So, we cannot find out about what is going on with our community in terms of health status if we don't know that we are a separate from other, if others 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 20 don't know that we are Japanese, Chinese, Vietnamese, Korean as opposed to Asian Pacific Islander as a group. We are often told that there are more than enough Asian and Pacific Islander health professionals available to serve our needs. That may be true that there are a very high percentage of Asians and Pacific Islanders in the health professions. However, if you will look at that a little bit more closely you will see that there is some discrepancy there. Most of the health professionals -- medical doctors and so on -- that are available theoretically don't serve where our populations concentrate. They are geographically mostly located in the Northeastern part of the United States. The majority of the population is in the Western part of the United States. And even if they were in the same location most of these health professionals are in institutions, are researchers, are non-service providers. They do not provide day to day service to our communities. So, there is definitely a misunderstanding in terms of our ability to access care. And then the major thing that impedes our ability to access care is the fact that we are so diverse. People often say that because they can't prove that we demand care, that we utilize services then we must not 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 21 need services. Well, you need to take into consideration that maybe the reason that we don't demand services and we don't utilize services is that we don't know how. If we enter into a service facility and we cannot speak the language that the provider is speaking, if that provider is not familiar with the kinds of practices and the behaviors that we encounter in our home countries, then we are not going to utilize that service. And people need to be aware of that. These three things -- the lack of information about our population, the misunderstandings about the abilities of providers to service us and our diversity in terms of ethnicity -- are the major things that impact us in terms of health services and programs. And they do relate specifically to our ability to service our community in terms of HIV. There are very few services that are culturally relevant, culturally competent to serve the diversity of our communities. So, what do we do about that? There are some solutions. But the solution is not necessarily to force us to write proposals to go through the exercise of setting quantifiable, measurable objectives because we cannot necessarily do that. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 295 22 There is something though that we can suggest for you to allow us to do. Maybe not force us to set those quantifiable, measurable objectives. Maybe to allow us to get a better understanding of what is going on in our community. Maybe to allow us to gain better access to care. And maybe to get better ability to get language and culturally competent services. We should be able then in our communities to plan together with you and inform you what we need. We don't need you to tell us what we need. We would like to be able to do that for ourselves. How do we get there? We should be able to survey, research and disseminate information on our communities. We should be able to develop policy and do program advocacy. We should be able to develop our communities and to develop leaders within our communities. And we should be able to have broad linkages to public and private resources that may be able to help us better to impact our community. There are some recommendations that Paul has referred to and that you have in your packets. And I would really suggest that those things be considered seriously. Thank you. DR. OSBORN: Thank you very much. Suki, welcome. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 23 MS. PORTS: First, I would like to start with a San Francisco hearing table weather report. It is a rather historic tsunami time -- 25 APIs, 12 white, 1 Hispanic, 2 unknown and other or missing. (Japanese phrase.) Loosely translated -- in other, missing, unknown, ox Japanese -- good morning. It is a bittersweet opportunity to talk before the Commission but I thank you for this opportunity. With the discriminatory immigration quotas lifted upon passage of the McCarron-Walter Act in 1954 enabling alien Asians to vote for the first time and to be eligible to enjoy all rights of citizenship it was not until 1962 when misogynation laws were stricken down by the Supreme Court removing the last legal barrier to equal citizenship -- particularly important because the laws previous to that did not allow Asian men to marry non- white or face imprisonment. And yet, they could not go back to their Asian country of origin to get a wife and still not come under the quota -- which allowed in part for the tradition that started of picture brides being brought to this country. Whereas, the European men were allowed to go back and bring their wives and that didn't count in the quota for that country. The recent ability of first generation Asian 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 at Te cee Ne et ee 24 immigrants to vote has limited the political power. With no more startling an example than the East Coast with the largest state with the second highest Asian and Pacific Island population, New York, 693,760 is still not enough to have a voting block of Asian Pacific Islanders to ever elect someone of Asian or Pacific Island descent. This political powerlessness has very clearly impacted upon the services provided to APIs -- from only English school liaisons to homes where 73 percent of the parents and children speak their own language at home to health care in a state which does not for the most part even list other in stats like cause of death which lists whites, blacks, Hispanics. Does that mean we don't die? Nor are we drug treatment clients. Nor are we STD clinic clients. In any AIDS listing until October, 1990, when stats were published for the first time in December were we there as Asian and Pacific Islanders not tied with Native Americans. Previously we had all been an other with no identifying or explanatory asterisk. New York City has yet to separate the Native Americans from other claiming confidentiality reasons though APIs were separated out in January of 1991 because ~- in quotes -- the numbers had risen enough to warrant it. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 25 Whereas in New York State the excuse has been the numbers were too insignificant to warrant the expenditures for surveillance data, hotline language capability, or materials translated in any API languages. I question how one would feel as a mother or as a lover to find that your partner or child was too insignificant. New York State's most recent April, 1991, magazine about AIDS and substance use never once mentioned APIs. New York City and State are not alone. This has happened up and down the East Coast. And Washington which provides stats like the U. S. Department of Justice has just put out a bulletin on female victims of violent crime. And while many Asians will not report such situations women listed are black, Hispanic, or other, and white. The fastest growth rate in the '80s among APIs as identified by the U. S. Census Bureau -- a large part due to the 1986 Immigration Act which enabled many, particularly from Southwest Asia to immigrate -- a whole new series of communities speaking other among the 50 languages other than English. In New York City, for example, where there is no translation other than Spanish -- and sometimes Creole. From two Asian Americans, Paul Kawata and me, attending the first CDC conference in 1987 to over 20 10 114 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 in 1988 and under 100 in 1989 the API community participation has grown. With the contrast of 1990 U. S. Census 3,830,850 Pacific Rim people on the West Coast with political power at every level of government including elected and appointed to the East Coast U. S. Census figures of 1,959,049. The numerous CBOs and the involvement of city, county and state contrasts with the East Coast where APIs are represented by a handful of advocate agencies with even fewer governmental agencies assisting in any comprehensive way and only a few foundations beginning to recognize now. In November of 1985 when I first started to look at people of color stats in New York City there were 51 other and unknown adults and zero peeds. Now, five years later, there are 360 adults and three peeds. Of this total we know as of April 30, 1991, there are 187 API men and 16 API women. O£ the peeds we don't know yet because they are still other without any identifying asterisk. Of national contrast the East Coast has a total of 90,289 cases of CDC defined AIDS contrasting with the Pacific Rim of 36,716. Almost invisible are the women -- the majority of whom are statistics upon death. 10 11 12 13 | 14 15 16 17 18 19 20 21 22 23 24 25 Services being so limited from prenatal counseling to pre-test counseling -- which in New York City, home of the U. N., only 15 blocks from the hotline -- has only Spanish, some Creole as I said before and part time two dialects of Chinese. With all Asians referred to her. And she must in turn tell them when they have called a second time that she cannot speak anything but two dialects of Chinese. Last month a case so clearly pointed out the lack of services. And yet, New York City has just gone through the spectacle of yet another butterfly incarnation emerging via the interchangeable other -- the Philippine- Asian woman playing the Vietnamese woman playing sex worker playing the stereotypical perk for an Asian GI, who could just as easily be a businessman or a tourist. But to update, Miss Saigon, the March 25th picture of 7000 U. S. navy men having their first R and R since Desert Storm. Where did the navy take these men? To Pati, center of Thailand's sex industry, which suffered economic loss of the Gulf War's effect on tourist and business. And the military pleasure trips. A navy spokesman said -- and I quote -- "We're beating the men over the head to use condoms. The navy is doing all it can do in terms of information and education to get the word across to protect every 18 and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 | 25 28 19 year old sailor about how to protect themselves." This protection against STD and AIDS included videos on board, detailed briefings, condoms Gistributed to everyone and additional condoms available at the navy's beach office. The article did not mention how the women on shore would be helped should they be infected by some of our gross national exports. Nor did the article acknowledge that the usually most efficient transmission of HIV, for example, is men to women, with limited women to men. The sex industry women in Australia are highly educated and organized. Contrasting with those of the Asian women who do not speak out and rarely organize noticeably. The women in the English speaking -- if you will notice -- countries distribute a brochure to our navy men that says -- get your ships, your bombs, your dicks and AIDS and get the fuck out of here. Incidentally, I didn't mention in the backgrounds that I am probably the stegasaurus of the sanseis. I think I am about the oldest sansei living. And my parents would certainly be concerned that I would be talking to a group of men and women of all different ages, including some older than I am -- even though I am stegasaurus of the sansei -- and to think that they had suffered during World War II to put me through college to 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 29 talk about sex in a group like this would probably put them in the grave if they hadn't already been there. Issues which emerge from the East Coast are no doubt the same as those on the West Coast. And yet, because of a lack of political voice there is also lack of awareness on the part of funders, particularly government at any level, that there are many reasons to provide very targeted culturally and language and class specific HIV / AIDS prevention information to an area with pockets of the newest immigrants of the 1980s coming from areas ripe with HIV and AIDS. And it is circular. Looking at WHO figures, the Philippines, Thailand, India and Japan stand out as some of the places where unlimited pleasures take place. Repeated again in New York City or any city as Washington, Boston, corners as far as New Hampshire, where women are battered and silenced and teenagers striving to belong participate in risky behavior -- sex, drugs and alcohol -- while non- English parents are not communicated with by schools. Recently some of you may remember the big brouhaha about whether condoms should be distributed. It totally went over the heads of Asian families who are recent immigrants. But now we have the great year of the budget deficit. Just as Asians and Pacific Islanders have 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 30 organized in New York City in a group called APICHA -- which is a little bit of a pun on tea countries but -- Asian Pacific Islanders Concerned About HIV and AIDS -- just as that initiative is getting started we are talked to about the limit of funds. I would ask you that we must proceed with very targeted, very specific -- as in those 11 recommendations -- assistance to people in our communities. To do less would be a new form of genocide. I must put one thing in context. In New York State where we are told that the numbers are so insignificant -- may I just point out that if in New York State where we have 203 adults and three peeds as the number that is too low to prioritize or to provide services for, that would mean that actually eight states of the 50 should stop all AIDS work because they have less than we have. And 19 of the metropolitan areas that the CDC lists of over 500,000 should close shop because they also have less than us. DR. OSBORN: Thank you. At this point do the Commissioners have some questions? We will be proceeding to a panel discussion in a minute. Don Goldman? MR. GOLDMAN: Yes. I have a question, if I 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 31 may. A number of years ago the only example that I know of of an instance in which our public health system has ever involved itself or been involved in the disclosure of anybody's HIV status occurred when I got a call froma young man with hemophilia somewhere in the Midwest who told me that there had been a tv show and they had talked about the success of their local HIV confidential testing program. And that through this particular county "X" thousands of people had been tested and everybody was negative except for two people who were gay and two people who were drug addicts and one person who was a person with hemophilia. That was fine except this person was the only adult with hemophilia in the community. And therefore simply by virtue of giving that data his identity became disclosed. Well, strangely enough, he had no problem but his wife got fired the next day. The concern that I have is that some of you have suggested that data be distributed on a basis which clearly more narrowly defines the Asian Pacific Islander status and ethnicity. And my concern is that if there was a report that in my community that there was even CDC data there was a Burmese person with -- Burmese ancestry with HIV I 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 suspect that I could probably identify who it might be if there were any people from Burma in my community. Isn't that a concern for any of you? MS. PORTS: I just might say that in New York City the whole impetus for AIDS research and AIDS services started with six white men. So, you know, I just don't think that is a valid point. MR. KAWATA: I think there are going to be several responses in order to effectively look at and address this question. And in order to look at what happened in your particular case we have to look at the time difference, I think, between when that happened and 1991 and 1992 and the implementation of ADA -- of the impact that ADA is going to have on our community. Understanding the framework of ADA I think will effectively allow us to look at the question that you are asking. Because ADA is in place it gives us a lot more opportunities and a lot more reasons to get more specific data. And what I mean by that is if we are going to effectively do prevention programs, number one, we have got to do it in a language that is understandable to the people that we are trying to reach. Number two, we have got to deal with a cultural sensitivity. And the truth about it is that if 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 33 you do something that is targeted for Chinese people, it will not work for people from the Philippines. It will not work for people from Japan. And what we need to understand is that unlike other communities because we all speak different languages if we don't get good demographics of where HIV is spreading and how it is spreading we are not going to be able to fully understand how we need to target our education, what languages those education programs need to be in and how we can effectively outreach within those cultures. MS. DIAZ: Last year I had the opportunity under a program funded by the Office of Minority Health to provide some technical assistance to APICHA right here in San Francisco. Is there anyone in the audience from that organization? Hello. I worked with Debra Lee and others looking at the kind of networking that you are doing across the nation in providing a number of community health centers that serve Asian Pacific Islanders with AIDS information. And one of the things that I suggested at that time was really looking at some of the materials and strategies and interventions that had been developed in the mother countries in terms of being able to educate in prevention and education around HIV issues so that a lot r SFE SET 10 11 12 13 14 18 16 17 18 19 20 21 22 23 24 25 34 of that work could be either built upon here and not developed de novo -- and many times not available in many of the languages that it would require to meet the needs of 43 different populations that you have described this morning. Do you know of any federally funded or state efforts that would pull together educational materials in prevention and education for a massive response in the 43 languages that it would require to reach a large population like this? Because rather than to develop these all anew a number of countries have some very valuable material. I am thinking specifically of Thailand. I know that some very good materials have been developed. I also know of the Philippines where there has been a lot of work put into educational material development. And do you know of any programs that would facilitate that use of materials prepared in the mother countries that might aid rapid dissemination of communication efforts to the 43 populations you have described? MR. IINUMA: I would like to address that from the standpoint of Hawaii. And first of all, let me address what you said about an organization that may be nationally based. 10 114 12 13 14 15 16 17 18 19 20 21 | 22 23 24 25 35 In Hawaii we have eight islands. And it may be that one organization may participate in that national organization. But we have got hundreds of organizations that don't have a voice at that level. And, again, our community doesn't have an opportunity to dialog at the national level with many Asian and Pacific Islander communities. And one strategy may be to provide us with an opportunity such as this so that we can have an opportunity to speak among ourselves and address some of the issues. The other point is that although you may have strategies developed for the mother country -~- as you said -- it may not be appropriate for our communities. We have very specific wants and needs. Those individuals or those communities that reside on the mainland, for example, those same strategies would not work in the islands. We have our own mechanism for dissemination of information --- MS. DIAZ: But then let me ask you a question. Would materials developed in Spanish for a Puerto Rican population both on the mainland and on the island of Puerto Rico -- could they be used in Hawaii for the Puerto Rican population that is Spanish speaking? MR. IINUMA: I am not real certain because I don't speak that. I can say that some of the kinds of -- 10 11 12 13 14 15 16 17 18 19 20 21 | 22 23 24 25 36 for example, in Hawaii all the education strategies are primarily English based, Western models. We have the local kids looking at the material and going -- what is this stuff, this is not us. You know, what I am saying is that there are children there going through the formal educational process but theix form of communication is pidgin English. And so, even if it is proper English, they will look at it and go -- oh, this is something that I don't like. And they will pass it aside. MS. DIAZ: Sir, you have in Hawaii the Kalehe Refugee Center with an education program for immigrants into Hawaii. Do you not think that materials developed in the mother country in those tongues might be useful to the people coming into Hawaii rather than, again, being able to have to develop into so many languages that that particular refugee center serves? MR. IINUMA: Again, let me just say that you have one center on Oahu. We have got eight islands. We have got so much data. There is just one center that is not able to address all the needs of ali the immigrants. MS. GUILLERMO: I think also what Gen is saying is that materials development is one thing but it is not ali there is to do about prevention. What we need moreso, I think, than monies to create a new brochure are 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 37 resources to facilitate outreach, resources to facilitate linkages and resources to get those materials out to the community. It is not all about creating a new brochure and leaving it there for somebody to pick up. So, those materials may be appropriate linguistically. But in terms of being able to make sure that those materials are picked up and utilized appropriately you need something much more comprehensive than that. And that is what we are advocating. It is not just materials development in particular languages. DR. OSBORN: I think we are going to be getting an opportunity to pursue this kind of discussion -~- which I think is very useful -- but I wonder if we might want to proceed since the initial presentations were intended as historical background. And we will be going onto some of the issues that will raise this kind of discussion again if we went forward. And I would then ask Jane Po to moderate. And I think my understanding is that you will be willing to moderate fully and including perhaps introducing people or having them introduce themselves so that we can enjoy the discussion. // // 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 38 ROUNDTABLE DISCUSSION: IMPACT OF HIV DISEASE AMONG ASIANS, ASIAN AMERICANS AND PACIFIC ISLANDERS Moderator: Jane Po Kiki Ching Sinh Nguyen Lei Chou Robby Robison Billy Gill Merina Sapolu Sharon Lim-Hing Paul Shimazaki Martin Hiraga Velma Yemota MS. PO: Yes. I am Jane Po from the San Francisco AIDS Foundation. And I have been given the challenging task of keeping watch over the Pandora's Box that this Commission has opened. Politely referred to as the moderator. And I would also like to put it on record that as moderator I am expected to come here without any biases. Unfortunately, I come here with the sympathies that are about to be expressed by the coming panel. The rules of the game will be a brief background where you should state your name and the communities you serve. And also if you will please limit your initial presentation to five minutes we will have 15 minutes worth of presentation after which about 15 minutes will be open to questions from the panel. We will also go according to the way your names are listed on the agenda. So, can we please begin with Kiki Ching? MR. CHING: Hello. My name is Kiki Ching. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 | 25 39 I am an HIV psychiatric social worker for San Francisco. And I am stationed part of the time at Health Center One where I serve as the psychiatric liaison to the HIV Clinic. I have also been involved with the Gay Asian Pacific Alliance Committee HIV Project. I facilitated a support group for gay Asian and Pacific Islander men with HIV for the last 2-1/2 years and have just started working with Lorelei in terms of putting together a caregivers group for Asian Pacific Islanders. Given the lack of time I just want to attempt to quickly run through some basic themes and issues that I have been thinking about. And the first category has to do with family issues. I think one of the most basic values in Asian and Pacific Islander families is the sense of taking care of your own family members when they are ill and dying. However, the social implications of this disease has been so frightening and repugnant to people that it often results in the ultimate rejection of this basic value. And so, what happens is that many times sons and daughters, brothers and sisters go uncared for. And it is quite a tragedy. Parents don't want to be exposed 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 40 to information. They avoid places associated with HIV services. They are fearful about their children being given HIV information. There is the feeling that it is something that foreigners are trying to shove into their own communities. And they do their best to keep it out. I attended a conference once for Asian Pacific Islanders. And these were people from our own community addressing the gay Asian Pacific Islander subgroup as a vector of transmission. And there was this sense that if HIV could be limited to the gay Asian Pacific Islander community, that Asians and Pacific Islanders would be spared. The different immigration histories, experiences, length of stay in the U. S., generational differences also affect the ways in which people respond to this crisis. And this has caused great conflicts within families when people have varying degrees of acculturation and attachment to the larger external community. There are the issues of shame, taboo against talking about sexuality and death. Also, in Asian families the role of the gay son is often quite -- it is quite poignant in that many times families concentrate their resources on the sons. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 41 They have been through insults of war and immigration. And they pool together their limited resources and fund their sons to go to college. And in return he will be successful and support the family and carry the family line. A son who is gay and is HIV positive feels not just the pain of his own experience but he has failed generations preceding him and generations to follow. Families may also come around to responding to the physical illness. But they still have to deal with the other social issues -- their son's sexuality, for instance. For those who are untested it presents another set of issues. Many times what I come across from Asian Pacific Islanders is the belief that if you test positive, it means that you have AIDS and that you are going to die. Your family will reject you. And so, people think why get tested and risk being abandoned by your family. Resources are inadequate. There is no cure. What is the point of risking the loss of the only thing you have for something that can never replace that support. One of the great tragedies of my work is coming across people who have suspected for years that 10 11 12 13 14 15 16 | 17 18 19 20 21 22 23 24 25 42 they were HIV positive. Their ex-lovers died of AIDS. They have friends who are dying. And they avoided getting tested. And it wasn't until they developed fullblown AIDS that they found out that they were positive. And it is so sad because you realize it is quite unnecessary now. For immigrants it is a particular problem. Their resources are even more limited. There are few family members here. They are afraid of losing their jobs, afraid of their legal status, afraid of confidentiality. And they really can't afford to get tested -- to do anything that will upset their precarious balance. For people who are positive finding out about their HIV status is often followed by symptoms of depression, suicidal ideation, isolation. They may tentatively go to a health clinic, find that services are defined in such a way that is quite foreign to them. They don't get a sense of caring from their doctors. There might be a long waiting list. They lose heart and they never show up. Or they have a complaint about their doctors. Asians typically don't voice them. It is impolite. And what they do with their dissatisfaction is that they don't follow up with services. And it is something that people can't afford to ae ar ee 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 43 do. For women and for hemophiliacs who have HIV it is an even more significant problem in that most of the services have been defined by gay men for gay men. And these people are forced to fit into services that are not adapted to them. I remember one case -- a monolingual Chinese man who got AIDS and was put ina halfway house for people with AIDS. His three roommates were gay Caucasian men who had no connection, no similarity with him. For people who are HIV negative or gay Asian Pacific Islander men there is the problem of negotiating safe sex. But how do you negotiate safe sex when your culture says that you shouldn't talk about these things, that it is taboo. Safe sex negotiation requires a kind of specificity. You have to be able to say to someone what you feel comfortable doing and not doing. But I think our culture tells us that it is not okay to talk explicitly about these things. So, people rely on implicit messages, indirect innuendoes -- which don't often work. And the result is that people find themselves in predicaments that they don't know how to get out of. Lastly, in terms of community resources, it is easy, again, to forget that when we refer to Asian and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 44 Pacific Islanders we are talking about quite a diverse group. And this category is really out of convenience. And we must not forget that we have to take into consideration the vast differences and advocate for diverse services while recognizing that we have to work with limited resources. It is a problem for Asian Pacific Islanders who are working in the field of HIV because we are often forced to be all things to ail people. And it is a real dilemma in terms of defining our services and prioritizing. Also, what I found is that -- this is something that I think is hard for a community to talk about. But we are such a diverse group. And historically we have not been accustomed to working with each other. And there has been warfare within the different ethnic cultures. Just a generation ago my mother often sat down with me and warned me about the dangers of associating with the Japanese. That was just a generation ago. And so, now I £ind being one of a few but growing Asian Pacific Islanders working in HIV that I have to serve a number of people who may not look at me as one 10 11 12 13 14 15 16. 17 18 19 20 21 22 23 24 25 45 of their own. I guess I will stop here. MS. PO: Yes. Again, may I remind the next speakers about the constraints of time. I know there is merit in repetition but if some of the issues that you are about to raise have already been raised, if you can just move onto other things. The next person is Lei Chou. MR. CHOU: Good morning. I would just first like to acknowledge all the Asian Pacific Islanders around the table. From my pretty limited experience dealing with HIV and AIDS it has been lonely talking about API issues. And it feels really good to see you here. I feel like we have family. And to the Commissioners, if you sense some kind of resentment from us, I would like you to know that it is not personal. We feel resentment because here we are again explaining ourselves. And we do this -- we have been doing this and we will be doing this for the rest of our lives. I can't just simply be. I have to explain constantly. I just would like to have that as a background. This roundtable says the impact of HIV disease among Asians, Asian Americans and Pacific Islanders. And to that I have to say I don't know. And I say that because of the following. Without an analysis of the structural issues 10 | 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 — 46 that we as Asian Pacific Islanders constantly have to deal with you are not going to be able to understand the frustration that we have. And the structural issues that we are dealing with are institutionalized racism. Suki has basically mentioned some of the things about statistics. And it starts from the CDC definition and how it is based on white gay men and the diseases that white gay men get. We are not white gay men. We probably get different diseases. But we don't know. As AZT is becoming a standardized treatment we don't know how AZT works on us. As it has been pointed out by a recent VA 298 study in which Asian Pacific Islanders weren't even participating in. As far as -~- and the second thing is the whole issue with numbers. This HIV epidemic has been so centered around numbers. I am not denying the complete devastation that is being experienced out there. But to that I would say are our lives worth less because there are less of us here. Do we have to wait until half of our population is gone to be able to get noticed by the government? We are a small group of people compared to the entire population of the U. S. And at this point I really don't know how the extent of HIV infection in our communities. And I 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 47 hope and pray it is not going to get worse. And I can say to you that if you tell the government to give us money, we will show you what we can do to save lives. One issue about cultural relevancy. All I have to say is that cultural relevancy is not a luxury. It makes a difference between whether or not someone is going to understand what you are telling them. Someone is going to think that you are speaking to them. It is not that you say something; we are not listening. No. It is because you are not talking to us. There is an article from the New York Times recently -- and I am sorry I don't have the dates on it. It describes a pretty innovative program targeted towards sixth graders. It is a mobile van with a computer game. And this article is called the Chinatown Journal. It tells when this van went to PS 1 where 75 percent of the students are Chinese. Most of them are recent immigrants. And this is what happens. Many sixth graders spoke Cantonese among themselves. As they registered their answers by touching the appropriate box on the screen some Chinese students identified themselves as white rather than Asian. Others clearly confused answered yes or true to every question. This is what we face all the time. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 48 And when it comes to HIV there is one word for that and it starts with a "G". I, myself, was an immigrant. I came to this country 10 years. I came in the early '80s just as the HIV epidemic was starting. And the spooky parallel of that is in New York City Asian Pacific Islander numbers have more than doubled. We grew 121 percent at the same time the HIV epidemic is going. What kind of information are they getting? To my knowledge, they are not getting any. Thanks. MS. PO: Billy Gili. MS. GILL: Good morning. My name is Billy. I am not a professional. DR. OSBORN: If you can get quite close to the microphone? It may be hard for people to hear you otherwise. Thank you. MS. GILL: Okay. I am not a professional. I am here as a mother who lost her son last October of AIDS. He was a -- oh, incidentally, I am Burmese. He was a substance abuser. He was incarcerated. He became ill. And evidently the prison didn't know what to do with him -- about him -- or how to treat him. And so, he, himself, started doing research. He wrote many letters. He read many journals. And the only response he got was Cara Lee 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 49 from the Asian Pacific Island AIDS Group. And we had been trying to get him home because I wanted to take care of him. And it wasn't until the Asian community went out and gave their full support that I could get him home. Well, I got him home. And all the so-called services that were out there really not out there. I had a hard time finding a doctor. When we did finally get a doctor he was not too kind. A lot of -- I felt -- discrimination. One night I called when my son who had dementia taken off and he said -- why are you calling me at 1:30 in the morning. I could go on and on. But I just wanted you to know that there really isn't that much in the way of service. If Paul didn't have the family -- that is his brothers and sisters and myself -- and whatever little help that the Asian community could give -- and they are strapped. They are really strapped. There is not much that they have. But however they could help. They were the ones that helped. And that is what I am trying to do now -- is to help. Whenever I hear of someone who does need help. I know there is very little out there. I give my time to that. I am not professional in any way. That is all I have to say. Thank you. MS. PO: Sharon Lim-Hing. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 50 MS. LIM-HING: Good morning. I am a humble community activist in Boston. I am here to speak about the gay, lesbian and bisexual Asian community of Boston. Generally, the impact of HIV on my community has resulted in a state of denial. Men often admit they haven't gotten tested because they are too afraid, if they admit that. This state of affairs has not been helped by organizations that should be out there educating. Gay Asians are a particularly neglected group in Massachusetts. Unacknowledged by Asian health educators and ignored by gay organizations. For example, in 1990 the AIDS Action Committee of Boston did a far- reaching survey of sexual practices among gay and bisexual men. The classifications for ethnic groups went as far as listing Portuguese. But Asians were lumped under the rubric other. If no statistics on gay Asians exist this is not because the cases do not exist. This is because the statistics are not being collected and broken down. Women debate about lesbians chances of getting infected in a vacuum of information. Statistics on woman to woman transmission and safer sex education for lesbians are negligible in general. But in the Asian 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 51 lesbian community both of these elements are now nonexistent. This has resulted in at least two types of behavior among Asian lesbians -- blissful ignorance as women hop from bed to bed or marital carefulness, which is when a tiny minority of Asian lesbians take the HIV antibody test in order to have unsafe sex with one partner in a relationship that is meant to last a lifetime. Needless to say, this monogamous relationship often turns out to be one in a series. And whether or not that lesbian returns to have another test done before moving onto the next partner is highly unlikely. Other barriers to safer behavior include low self-esteem related to racist stereotypes and internalized racism. In order to make it with some hunk a man may forego bringing up the topic of safer sex for fear of blowing his chances. In our women's community and gay community where many subtle and overt forms of racism exist the same is true for women. Another barrier is homophobia. For those of us in the closet hoping that one is not homosexual and warding off the possibility that one may be leaves one without much time or energy to consider safer sex 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 52 practices. Therefore, in order to be effective HIV prevention cannot be a single issue platform. AIDS education must incorporate lessons of pride and anti- homophobia. Nor is prevention enough. We must be ready to provide support and services for those of us who do become infected. Again, the same problems of outreach exist. I want to see more than what I call token or easy outreach to let gay, lesbian and bisexual Asians know that services are there for them -- if these services are there for them. As one who has done homosexuality 101 workshops for the South Cove Community Health Center which serves the Boston Chinatown community I can attest to the extreme homophobia of health care providers as well as a deepseated reluctance to talk about sex in general. This is also true of other Boston Asian American organizations that could be disseminating HIV information. Before health educators can go out and do their educating they need to educate themselves. They need to do a profound overhaul of how their morality affects their carrying out of their mission. And they need to do all of that fast. Gay Asians are not the only overlooked group. I would like to convey a message from Pat Song, 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 53 adolescent AIDS coordinator of the AIDS office in the Massachusetts Department of Public Health. She is not able to make it here today. But she would like to advocate for Asian youth. Teens as a usual part of growth experiment with drugs and experiment sexually. This means that any teen that has unprotected sex is at risk. Currently in the United States there is a syphilis epidemic. One out of every seven teens gets a sexually transmitted disease. Since 1985 in Massachusetts the STD rate for teens 19 and younger has doubled. And kids of color have been disproportionately affected. We can use the syphilis epidemic as an indicator of things to come. In Massachusetts there are 143,500 Asian Pacific Islanders. And a large percentage of these are Southeast Asian. The city of Lowell, Massachusetts, has the second largest Southeast Asian population in the United States. Newly arrived these immigrants benefit from no health education, no health care, no services. There are reports of Southeast Asians taking drugs and testing positive. But they are not targeted by any educators. They receive no information. And the epidemic will spread because all communities have sex and do drugs. Massachusetts teens 10 11 12 13 14 15 16 17 18 19 20 | 22 23 24 25 54 have a relatively high level of AIDS knowledge. However -- of Boston University conducted a study which found that Asian youth have the lowest knowledge of AIDS of all groups -- black, Latino, white and Asian. There are not enough services for Asian youth who are already in trouble. Drugs, homelessness, crime. There are absolutely no HIV prevention efforts for Asian youth. Sexuality and health educators blinded by the model minorities stereotype believe that Asian youth don't have sex or do drugs. As someone who was an Asian youth a decade ago I can tell you that is not true. We must devote more funding and attention to Asian youth or we may lose our future generation. Thank you. MS. PO: Martin Hiraga. MR. HIRAGA: Thank you. My name is Martin Hiraga. And I am a recovering drug addict and a gay man with arc. I am very angry at some of the questions that have been asked of us. And I am not going to portray the model minority that has been forced upon us. I am going to tell you that I am angry. I am angry because I live today in isolation. I live today in isolation in my recovery 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 55 from drug addiction and I live today in isolation in my recovery from HIV disease. In Washington -- well, when I first began to experience symptoms of HIV disease in 1984 when I had my first case of shingles that covered from the bottom of my chest to the back of my head there were 19 people with AIDS in the state of Utah where I was living. I joined the AIDS Project Utah at that time because I thought it would help me and because I wanted to help other people who were living with HIV disease. I knew 11 of those 19 people. I drove sometimes 300 miles to talk to people who were Mormons and who were living in small towns in Utah because they were living in isolation. I am doing that again today. There are 385 cases in Utah today. Mind you, today in Washington, D. C., where I live, there are seven cases of other. I don't know who these other are. I don't know because they have labeled us as -- well, they have labeled Native American. They have labeled Asians. They have labeled Pacific Islanders. As something other than what is real. I am a real person. I ama real person living with HIV. When I think about my otherness I look at the problem of otherness in very personal ways. In May of 1989 I was taking care of my cousin who was living in 10 11 12 13 14 15 16 17 18 19 20 21 22 23 | 24 25 56 New York City in the epicenter of the epidemic who had arc. He died of arc. He was never able to be diagnosed with AIDS. He died with a disease that is not an AIDS- defined disease by the CDC. But in the beginning of May I had gone to take care of him. And in the process of taking care of him he became very ill and fell. And I dragged him from Seventh Avenue and Twenty-Fourth Street to St. Vincent's Hospital. I carried him on my back. He weighed all of 90 pounds. And I carried him because it was 5:30 Sunday morning and I couldn't get a cab because I looked drunk because I was sick and because he looked very ill. And the cabs wouldn't pick us up. So, I took him to St. Vincent's. To go up to the little window in St. Vincent's Hospital and say -- my cousin is very, very sick, I want help. And they said -~ I'm sorry I don't speak your language, go to St. Luke's. I didn't go to St. Luke's. I stayed. I stayed and I stayed until they would take him. And the real reason they wouldn't take him was because they didn't have enough beds but they wouldn't tell me that. Another part of my otherness is in an essential part of how AIDS education is done. When I was 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 57 living in Utah in 1984 the Mormons continued to control the state government. And there was no HIV prevention education provided that targeted gay men. The federal information that targeted the general community was stated in very vague language. Don't have sex. Well, what gay man is not going to have sex? Because that is how we connect with other people. And today I look at Asians and HIV prevention education among Asians. As was stated here, we cover numerous languages. We cover numerous cultures. My mother is Okinawan. My father is Japanese. I am third generation. My parents' parents don't speak the same language and often used us to interpret for them. Even though we supposedly were all the same group of people. And I look at a recent review that my organization -- the Indochinese Community Center of Washington, D. C. -- did of 200 pieces of AIDS literature provided to us by the National AIDS Information Clearing House. We did a review for them. There were 200 pieces of information in every language represented here and some that are not. And we looked at AIDS education that was produced here in the United States and AIDS education that was produced in other countries. Of those 200 pieces of information we were 10 11 12 13 14 15 16 17 18 19 20 21 22 23 | 24 25 58 able to recommend only 12 pieces of information. And six of those pieces of information were in English. When I look at AIDS education I look at AIDS education for Asians in the United States. For example, when I look at Chinese pamphlets I look at the front of the pamphlet. And it says AIDS in Chinese characters. Well, the characters for AIDS in Chinese are love, death, sickness. What person is going to want to read a pamphlet that says if I give charitably to another person I will get sick and die? No one. Appropriate AIDS education here in the United States would appropriately use the English characters for AIDSs and begin to talk to Chinese living in America in the language that we use here in America. I am a Japanese American. When I look at AIDS education materials that portray -- that are supposedly for Asian Americans -- and it portrays whites and Hispanics and blacks and Native Americans all in the same group I say that is not for me. Because I am not black. I am not white. I live in a city that is 70 percent black, 30 percent white and who knows what else. I know -- when I came here to San Francisco I was amazed that I didn't know every Asian I saw on the street. Because of my otherness. My otherness is my 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 59 problem. Otherness drove me to addiction to cocaine and to pills. I can't drink alcohol because I am Asian and I get drunk too easily. One drink and I am drunk. I didn't like that. I wanted a longlasting high -- a longlasting high from the pain of always being other. I lived in Salt Lake City, Utah. The Mormons called me -- one Mormon said to me -- there are too few of you to be a minority. I moved to Rochester, New York. I founded Rochester Act Up. And I never came out to people as being HIV infected. Despite the fact that I had begun my recovery from drug addiction in 1986 and in 1987 I began my recovery from HIV disease I never came out to people as being HIV infected in public. Although I was speaking about HIV almost every day in the print press or on the television. Because I had very few relationships with other Asians and I treasured those relationships with other Asians to the point where I would not destroy my relationship with other Asians in order to tell the world that I had HIV disease and that I wanted people to pay attention to HIV disease. Let me talk to you about drug treatment for Asians. It doesn't exist. I spent 10 years slipping and sliding and relapsing from my addictions. Ten years 10 11 12 13 14 15 16 17 18 19 | 20 21 22 23 24 25 60 because I would go to drug treatment facilities where I as an Asian man was told -- you have to pray to god. Well, excuse me, but my culture doesn't teach me to pray to god or Jesus. My culture teaches me to have a relationship with my ancestors, to have a relationship with my peers, to have a relationship with my family. My drug addiction drove me to intense, longlasting shame. No one ever addressed in my drug treatment facility -- no one ever addressed the fact that when I went back home to live with my parents that they would never talk to me about the fact that I would steal $300 a day from my mother's purse to sustain my cocaine addiction. Or that I would -- I was caught -- when I was a teenager I was caught so many times shoplifting diet pills -- of all things, diet pills -- from the supermarket that my father set up a bail fund for me. No one addressed those issues. My father did those things in silence. My mother replenished her purse in silence. Not because they are co-dependent but because they are Asian. Because Asians don't talk about those things. And Asians are just now beginning to address issues that really need to be talked about. But we can't address it the way white people do it because we have to 10 11 12 13 14 15 16 17 18 19 20 | 21 22 23 24 25 61 face our shame. I am going to talk to you about one more thing about my otherness. Today was the very first day that I ever told a large group of Asians that I was a drug addict. I have never said in public other than with a few people who I knew and I knew I could trust and I knew I could be safe with that I have HIV disease. I don't tell my best friend -- that I am in the hospital because I don't want people to take care of me. I don't need white people taking care of me. I don't need Asians taking care of me. What I need is support. What I need as a person with HIV is I need to be able to access the health care system. I need to be able to access the health care system in a way that I can feel comfortable with. When my white physician tells me -- you can't go to the acupuncturist because you are ina protocol and the protocol doesn't ailow you to access other health care systems than the ones we prescribe -- excuse me, I am still going to go to my acupuncturist. If I were to make a recommendation about my acupuncturist, my acupuncturist uses separate needles for me as he does with all of his patients. He uses a separate set of needles. Because that is part of the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 62 Maryland state regulations. But I discovered that he wasn't sterilizing the needles for me between uses. And I had to explain why he had to do that. And he says -- well, it is the same germs. And I said -- well, I had to do the HIV education. I, the patient. Once again, I am having to do most of the work in isolation. If I were to say something about Asians and Asian doctors, I would have to say that that must be -- HIV must be included as a part of testing and education of acupuncturists and Asian doctors here in the United States. But more than that white doctors have to learn about how I am going to deal with my disease. I have to have white doctors I can be confident in who are not going to recommend treatment that will take me back to my Grug addiction. I have to have a medical staff that knows that when I come into the emergency room and I am unable to breathe -- because the two kinds of diseases that I tend to catch most are pulmonary infections and skin infections -- that when I go into the emergency room and I can't breathe the first thing they have to do is call my father. That when I say person to be contacted in 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 63 the case of an emergency I don't mean when I have gone home from the hospital on a stretcher. I mean when I am there my father needs to know. My sister needs to know. My family needs to know because I cherish relationship with my family. And white people will never understand that because without our families as Asians we are nothing. We are nothing. We are no one. We are only whole as a part of our whole family. I cannot recover from HIV in isolation. I cannot recover from drug addiction in isolation. I live in Washington, D. C. I know no other Asian drug addicts who are in recovery. I cannot recover from any of my diseases in isolation because in isolation I will die. Thank you very much. MS. PO: Thank you. Again, the reminder to the next speakers. Sinh Nguyen. MR. NGUYEN: Thank you for reminding me about that. And first of all, my name is Sinh Nguyen. I am community organizer for People of Color Against AIDS Network in Seattle, Washington. And first of all, I would like to thank the Commission for including me in this discussion here. I am very conscious about inclusion and exclusion because I have come from the refugee community. I am Vietnamese. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 64 And to be able to come to this conference you have to be able to express your opinion to speak English well. And I think most of the people in my community don't speak English well. So, this is very difficult for us to go to this kind of conference. And, in fact, that I have gone quite many conferences. And sometimes just me in the whole conference. There is no other refugee or Southeast Asian. Today I am very pleased that we have three. And I acknowledge the wisdom of the Commission. To talk about the impact of the Asian community in Seattle, Washington, I would just like to go just a little bit about the population of Seattle, Washington. Asian Pacific Islanders in Washington is one of the largest minority groups in Washington. And Asians is the largest minority concentrated in Seattle / King County. Talk about the impact of HIV infection and AIDS in Seattle, Washington. I think I need not repeat a lot of information that has been discussed here. But there is one thing I would like to just because I think that it is important to reiterate -- the problem of marginalization. The concept of other. I think just before I came to this 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 65 conference yesterday I did a presentation in a large group of refugee service providers called Refugee Forum of King County. Before I did the conference I called people in San Francisco for statistics that is broken down in ethnic groups to convince the people in my community that we do have a problem here. Vietnamese do have AIDS. MI know because I am in contact with some Vietnamese, Cambodians. Across the board -- we do have HIV infection in our community. But people tend to deny that we have that problem. Another problem in our communities is that when you talk we tend to-look at the number. We don't look at the rate of infection. Because the rate of infection in our community is very alarming. In fact, about a year ago we have 18 cases. Now, before I came to this conference we have 32. So, it is almost 100 percent increase. That is very alarming. As compared to the Latino cases -- Latino is over 65. So, we are about half. But look around the state there is only two Asian persons doing outreach, education, prevention to the whole state. I think that is not enough. The problem here is not because my agency 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 66 does not care about the Asian community. The problem is because of the system here. We often have project. The project is focused on like target iv drug user, sexual partner. And the priority from the black, Latino and then Asian. But that is understandable then because there is sometimes maybe one project is we can't have money for just a quarter of an Asian. So, it is very difficult. And the next project -- another quarter. But it is most of the time the project is not going to happen the same day. So, you can combine the three project together and have an Asian worker. So, we end up in having non-Asian in the system. So, I think the Commission should look into somehow to rectify that problem. If you talk about project and then we don't have any Asian to cover the whole community. Basically, I have three person doing outreach to the Asian Pacific communities. First of all, prevention, education to those that are higher risk than other people. And then educate the community for support for those who are HIV infected and also living with AIDS. Thirdly, we have educated the system to be culturally sensitive to serve the people in our community. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 67 Just to illustrate this, why do we have to do support? Educate people in our community to support those who are HIV positive and living with AIDS. There are a couple incidents. There is a Vietnamese who was infected five years ago. And when he discovered that he is HIV positive he left the family. He left the community to a very small place further south. And he became very isolated. One day he called people in Oregon. Not me but Oregon. And the people in Oregon didn't have anybody from the Asian community. So, they called back in Washington and finally got in touch with me. And I gave the number to the person in Oregon. And the Vietnamese called me and he is very glad that he talked to me. Somehow that he can have a some type of connection with the system here. But he is still very isolated. So, what we need here -- just like the previous, Nartin here -- we talk about the support of families. Support of the family is very important for living with AIDS. And so far he hasn't done that. He doesn't have -- I mean, he doesn't have support from the family. He cannot tell that he is gay and he is infected with HIV with his family, with his community. I think this is a tremendous fear in him. That is why he looks miserable 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 68 because of this tremendous fear. And one day I asked him to come to speak at the training for the interpreters. And he came but at that moment -- no, I cannot do it because there is some people I am afraid that they will leak the information to the community. So, he didn't do it. And he left. And I think that is fine with me because if we don't force -- as long as he is not comfortable that is okay. But I think that is something we have to work on. Another problem is a man who has STD came to a clinic. And a white doctor asked him to take off his clothes. And he -- no, no, I cannot do it. And the doctor insist that -- well, you have to do it because if you want to get the service you have got to do it. And the man just insist that -- no, I cannot do it. And finally, the outreach worker intervened that -- well, you have to be culture sensitive here. And he have support from other outreach workers until finally the doctor back up and invite a man doctor in. I think that is the type of culture insensitive we having to educate the people in our system -- the heaith care system that have to provide equal access to those who don't have familiar cultures and also the language problem. Well, I think that is probably I want to stop here because I speak too long. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 69 MS. PO: Robby Robison. MR. ROBISON: My name is Robby Robison. And I am from San Francisco. And I ama treatment advocate with the EACH program -~- which is an acronym for Early Advocacy and Care for HIV. This program is an early intervention program that is geared toward men of color and underserved populations in our communities. First of all, I want to acknowledge that I am a Filipino American man. And in that sense I would like to say (Good morning in Tagalog) to the Commission members. As well as good morning in English. Because in the Philippines we have two official languages as a small part of recognizing our diversity. Dr. Osborn stated that diversity is critical in responding to the HIV epidemic. When I think about that I think about government policy. And I know that all of us here as APIs are committed. And we are here in the hope that we can try to effect some positive change in that policy to recognize our diversity in order for the government to address -- or at least help us in addressing our needs as we see them. Mr. Kessler mentioned that the Commission is greatly interested in some of the progressive programs that we have in the gay community. And I think that I want to -~ the EACH program to me is one of those 10 +1 12 13 14 15 16 17 18 19 20 21 22 23 24 25 70 progressive programs. Because what we are doing there is that our various communities that are a consortium in that program have come together to address the need as far as early intervention is concerned in the progression of this disease spectrum. We have decided to resist further fragmentation along racial and ethnic lines and the fact that response from government sources has been woefully inadequate for us in helping us address our own needs as individual communities. When I look at this report that the Commission has -- the April report -- when it talks about early intervention and it talks about six points here that it must include. We over at the EACH program include each of those six points. And we recognize those as important. But at the same time we would add to that the richness of our cultural diversity in order to try to help reach our target populations and get them to take care of their medical issues. When I look at my work and I look at clinical trials, for instance -~ NIH has a large clinical trial system. And we know statistically that Asian Pacific Islander men are just, you know, barely represented in this system. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 71 When I try to relate the clinical trials process to my clients as a way of -- as another option for them to get involved with their medical issues, you know, they have some concerns. And I echo those concerns. Because if I were to just go through the initial intake process, you know, and they asked me -- what are you, are you black, white, or other. And I say -- how am I going to relate cultural sensitivity to them if even just in something as simple as the form they are not even acknowledged. And so, to me, that seems like such a simple thing that policy could change. To at least acknowledge that we are there as a group. When the government collects data and puts this together -- as like Tessie and Suki had brought up -- that data is inadequate because it does perpetuate that model minority myth. And that model minority myth doesn't help us address our needs as individual groups within this whole group. What that does, in turn, is it perpetuates other myths within our communities. Because then this kind of inaccurate data will perpetuate myths such as HIV is a disease that is just strictly limited to the white devils so you can't associate with them. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 72 So, this really hampers our efforts as far as trying to reach our target populations and trying to help them recognize that there are problems but that there are resources and there are options out there for them to access so that they can be helped. Basically, I would just like to see the government to really recognize and acknowledge our diversity as different cultural groups, you know. And within that especially all the different subgroups. We can do the work. And this program is just a small part of showing that we are out there. We are involved with different individual programs. And we already have these mechanisms in place. We are not asking the government for handouts. We just want the government to acknowledge what we are doing and to ask us what we need. And then we can go out and do the work and do it effectively and do it to where it is culturally responsive to the needs of our individual communities. When I look back in history it does show that when the government recognizes a problem and does take responsive steps to take care of that problem it can effect change. Early on syphilis was recognized as a big problem and the government recognized that. And it funded TT oe oe De 10 +1 12 13 14 15 16 17 18 19 20 21 22 23 24 25° 73 educational prevention programs and distribution of condoms to soldiers in World War II to the point where syphilis had reached such low levels that they thought that they actually had seen some resolution to it. So, I know that that is possible. It is just a matter of recognizing and acknowledging it. My personal stake in this is that I am a person living with HIV. And I have had a life partner taken away from me because of this disease. And in particular right now because especially in this city Filipinos are the most affected group when it comes to this disease. I just really wish that you could help provide us with assistance so that I can do my job and go out there and try to prevent my brothers and sisters from suffering anymore with this disease. Thank you. MS. PO: Okay. I will ask the Commission if we can get some more time because we did start late. And lest you think that this is a hegemony of Asians we do have a Pacific Islander, Merina Sapolu. MS. SAPOLU: I would like to say talofa, malo lelei -- which means when translated hello. My name is Merina Sapolu. And I work for Kokuakalehe Valley Organization which is a nonprofit organization in Hawaii. And we are part of -- as one of you had mentioned. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 74 I also am affiliated with the Tua (sp) Organization -- which is the only Samoan organization doing any education on HIV on the island of Oahu. HIV impacts on Pacific Islanders and Asians. Because I am the only Pacific Islander present today I would like to change API to PIA. I hate to be thought of as an afterthought. The way Pacific Islander is added to Asian it makes me feel like we are an afterthought. We are not heard at all. Just looking around this gathering there is none of us except me. There is Gen Iinuma who has been. so nice to speak for us. But we would like to have a voice of our own to speak for ourselves. When we talk about impact of HIV in the Pacific Islanders -- our communities -- I don't know where to start because we will talk about cultural barriers. We will open up things that we do not discuss at all in our communities and which make education very hard for us who are trying to do education on this to our communities. We are talking about sex which is ano no. We do not discuss these things. And I have realized that there is no culture at all that loves to talk about sex. Within our culture there are a lot of subcultures which make our job harder still because then when we talk to these people you have to think of other issues that will 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 75 be arising from these things -- like church culture that teach people it is a sin, it is a punishment from god, that is why these people have AIDS. How do you go about those? There is a lack of numbers in us in education. There are a lot of communities like the Tongan community back home in Hawaii. And I know even here in California that nobody is working on those. The Samoan communities here -- I have been up here for so many times in conferences, in trainings. I am the only Samoan face there. Is anybody trying to reach out to these communities or are we just being added so that other communities could get more funds? I think the issue that I would like to talk about is we need to be reached too -- just as the Asians, just as the blacks, just as the Hispanics. We have to have a voice of our own. We have to be included in decision making. Make decisions with us not for us. Because a lot of times if the decisions are made for us the services are not for us. We would not access those services at all because they are not geared to our needs. It is geared to other communities' needs. And that means that we would not come near those ones. And we will help then in transmitting the 10 114 12 13 14 15 16 17 18 19 20 21 22 23 24 25 76 disease without even going in for any treatment at all. Our population has a very high number in sexually transmitted diseases -- which make us a very, very high risk community. And yet, a lot of us do not go to any clinics or to any services that are offered because they are not appropriate -- culturally appropriate for us or we are looked down upon as lazy people. I do not have much to talk about. I am so happy for whomever has recommended me to appear in this trial, in this testimony. So, the Commission can see that we Pacific Islanders too are very, very at risk with HIV because of the other high risk factors that are in our communities. One politician called us happy campers. Well, I just wanted the Commission to know that these happy campers have a lot of health problems. We need help too. It is just as we were about to approach our communities then the funding thing taken away. There are no fundings anymore. Or if there are any fundings, the pay is so low that nobody would like to work to be an educator to educate our people. So, as a last thing to say, please help these happy campers. Thank you. MS. PO: Paul Shimazaki. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 717 MR. SHIMAZAKI: I am going to keep it short. I am not going to repeat what other people said here today. I ama gay man. I am living with HIV. I do outreach work with Asian Pacific Islander gay bisexual men. I also volunteer my time as a direct support provider. I make $700 a month. I can't afford to fly to Washington to get in NIH drug trials. There is an obvious need for local, community based trials where people can enroll through clinics and through comnunity doctors and get counseling and advice in a language they can understand in a culturally sensitive way. I am going to say four points. The second point is I am on AZT. And as everyone knows it is not a perfect drug. Its effectiveness wears out over time. I have been on it for a year and a half. And I am not interested in more AZT studies targeting its effectiveness on specific ethnic groups. Those studies should have been done years ago. Data for women should have been collected years ago. We shouldn't waste our time enrolling people in trials for a drug that may soon be superseded by newer, more effective drugs with less toxicities. Unfortunately, many people can't get AZT or other drugs unless they are in a trial. 10 11 | 12 13 14 15 16 17 18 19 20 21 22 23 24 25 78 Three, we should truly provide access to Asian Pacific Islanders into these newer trials for second generation drugs so that ethnicity is taken into account from the beginning, not added on later. I also refuse to accept the category of other. The fourth, and my last, point is access is different from wholesale enrollment. Access means availability and informed choice. People must be able to weigh the risks involved in entering a clinical drug trial. Thank you. MS. PO: Velma Yemota. MS. YEMOTA: I am with the Gay Asian Pacific Alliance HIV Project. I ama volunteer caregiver. As we have heard there are so many ethnic groups bunched under this title of Asian Americans that I want to speak from my ethnic background which is Japanese. Culturally when I was growing up -- and I am sure that this happens with many other Asian cultures -- we were told to respect our elders, respect our parents, don't bring any disgrace upon your family or the Japanese community. And sex was also a taboo sort of subject. And so, a lot of people who are gay and HIV positive have a very difficult time telling their parents. I have heard several say -- I just could not tell my parents, I just 10 14 12 13 14 15 16 17 18 19 20 21 22 23 24 25 79 could not, but eventually I confided in my sister. Hoping that she is going to tell the parents. But I just cannot -- cannot tell them that I am HIV positive. And so, these people alli live in isolation. And as they get sick and live in this isolated life they begin to want to eat ethnic food -- especially if they are not well. And the person that I go to see had a big hospitalization where he had pneumocystis pneumonia. And he said he lost a lot of weight because he couldn't eat that hospital food. And so, he asked one of his friends who was non-Asian to go to a certain hotel and get him some chicken teriyaki and tempura and all these wonderful foods that he has been thinking about. And he wasn't sure when he got home -- he was going to have this one on the day he went home from the hospital. And he said he wasn't sure’ that he was going to be able to eat it. But he was. And he decided that he really had to have ethnic food. And that is one of the most important things I think. When they get sick about the only thing that they really enjoy is ethnic food because otherwise they are just taking a lot of all kinds of medication. 80 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 My expectation for the Japanese community is that they will have a really aggressive educational program for the community people so they will know what AIDS is all about. As Martin said, they do have pamphlets. But lots of times when you read these pamphlets that are written in Japanese or Chinese or whatever it is really hard to comprehend. And if you had people telling you, talking to you, showing you things, then you begin to really understand what is going on. But pamphlets alone -- I see a lot of them stacked up in my church and people take them. But they still, you know, really don't know just what it is all about. Thank you. MS. PO: We will now open the panel for questions from the Commission. MS. DIAZ: I would like to ask Merina. The Pacific Territories -- if the federal government or any other U. S. public health authority sponsors clinics or programs there or AIDS services or education or a component? MS. SAPOLU: Not that I know of. Other than we have our clinic. And then there are other community based organizations in the community and the state health department who has outreach workers and health educators. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 81 MS. DIAZ: Specifically for AIDS education? MS. SAPOLU: For AIDS education. MS. DIAZ: Okay. MS. SAPOLU: With the clinic that I work for AIDS education is just part of it -- which is a very new added component to the whole clinic. And so, it hasn't been that long. I have been in AIDS education now for only three years. So, that is how long we have that. MS. DIAZ: How is your clinic funded? MS. SAPOLU: State, CDC. MS. DIAZ: CDC. MS. PO: Don Goldman. MR. GOLDMAN: Thank you. I have two questions. I thought I heard Mr. --- MR. NGUYEN: Me? MR. GOLDMAN: Yes, I am sorry. Talk about an incident in which someone was being treated in a program and, I guess, was asked to undress in front of a woman physician? MR. NGUYEN: That was a -- medical clinic that is funded by public money. MR. GOLDMAN: My question is when does -- I would like to ask any of you to address it. When does cultural sensitivity become abiding by racism, sexism, or homophobia? I£ the same person went to a physician and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 82 said they didn't want to undress in front of a gay physician or said they didn't want to undress in front of a black physician or said they didn't want to undress in front of a woman physician, at what point does abiding by those kinds of concerns become itself a form of supporting racism or -- itself? MR. NGUYEN: Martin, do you want to make a comment on that? MR. HIRAGA: Yes. First, Mr. Goldman, I am going to challenge you as a white man how dare you tell us what racism or sexism or homophobia -- we can speak that to each other because we know what racism means to us. Second, when we talk about cultural sensitivity the issue of gender separation among Asian cultures is paramount to our relationship to each other. Because Confucian philosophy tells us that there are only certain relationships that can be had. Undressing in front of a woman as an Asian man violates a very strong boundary between the sexes. The relationships between the sexes are written into our lives from the very day we are born ~-- not unlike Americans -- but if we violate a single relationship we begin to unravel the relationships that we have with other people in our community. And, as I said earlier, we don't have our 10 11 12 13 14 15 16 17 18 19 20 21° 22 23 24 25 83 communities -- if we violate rules that begin to unravel our relationships with our communities, what have we? Nothing. MR. NGUYEN: Another problem I think is a lack of understanding of the culture is much more important than just -- I mean, the insistence of asking the man to take off the pants I think indicates the woman doctor doesn't understand the patient's culture. DR. OSBORN: I think I am going to interrupt the discussion here because we are coming right into provision of services as the very next theme. I think we have had some very rich testimony from the panelists who I hope can stay with us and be part of additional discussion. But perhaps at this point a break will refresh our thoughts. I want before we do break to express special appreciation to the panelists. I know without knowing as much as I should about your cultures that many of you have been particularly forthcoming in a context which is difficult. Some of you have shared very personal feelings. And we do appreciate how hard that can be and therefore very much appreciate your eagerness to help us understand. With that, I think I will suggest that we break for 15 minutes and return for the next panel. And I 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 84 hope everybody will be able to continue. (A brief recess was taken.) DR. OSBORN: I am going to ask again the understanding of the panelists that we keep within some reasonable range of the time that we have given you. And with apologies to Commissioners. As I am sure everybody realizes, all of us have full time jobs somewhere else. And so, when we go in and out it isn't always to the men's or ladies' room. There are some other things that are pulling on us. So, I hope you will be patient with us as we have to sometimes go and attend to other matters. We are very pleased that you could be with us and have sat through some interesting discussions so far. For this next panel I will ask Fernando Chang-Muy to take over and again moderate. And I very much appreciate your doing so. MR. CHANG-MUY: All right. Thank you, Dr. Osborn. ROUNDTABLE DISCUSSION: PROVISION OF SERVICES Moderator: Fernando Chang-Muy Wayne Antkowiak John Manzon Jaime Geaga Nga Nguyen Dean Goishi Tony Nguyen Kerrily Kitano Joanna Omi Lori Lee Dorothy Wong MR. CHANG-MUY: First, we would like to say 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 85 thank you to the Commissioners for convening this meeting. And we would like to thank the Commission staff for inviting all of us. You are going to hear testimony from straight, gay and bisexual people. You are going to hear testimony from people from different parts of North America and the Pacific Islands. And you are going to hear testimony from U. S. citizens, immigrants and refugees. The witnesses will testify about different issues. And the way we conceptualized it you are going to hear from people from the Pacific Islands first. They are not add-ons. They are going to go first. Then you are going to hear about testimony from people from the East Coast. Then we will switch back to the West Coast. And then you will hear specific testimony about Southeast Asians, then Filipinos, and then some general issues on funding. And then we will wrap up with issues on language and finally with issues on youth. With that, Wayne, if you could begin please? MR. ANTKOWIAK: Yes. My name is Wayne Antkowiak. And I am the director of Communicable Disease Control from Guam. There is a number of issues I would like to bring up. And in five minutes it is very 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 86 difficult to do that. So, I will try to go through this as rapidly as possible. For beginners, I think it is necessary for me to give a little orientation in terms of geopolitical status of Guam and Micronesian Islands. Guam is a territory of the United States. We are ali citizens of the U. S. We have a population of approximately 140,000. We have no vote in congress. We have no vote in the senate. We are currently seeking a commonwealth status. Now, one of the first recommendations I am going to make is that I think -- I am very appreciative of being invited to speak. But I am disappointed that my Micronesian neighbors weren't invited. And my Micronesian neighbors being the Northern Marianas, the Commonwealth of the Northern Marianas. And these folks are also citizens. The Federated States of Micronesia -- which is divided into four states, the states of Panape, Yeh, Kosori and Panape (sp). The Republic of the Marshall Islands. And the Republic of Palau -- which is still under the auspices of trusteeship to the United States. All of these entities receive funding from the U. S. government. And all of us are very concerned with HIV in our particular part of the world. It is very 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 87 easy to forget about us. We are on the other side of the world. We don't have any political power. And I doubt that we ever will have any real political clout. But nevertheless HIV is a problem. And I am happy to have this opportunity to at least develop some awareness in terms of what is happening in the Western Pacific. First off, in terms of Guam, we have currently eight cases of AIDS and 21 cases of folks who are HIV infected. These numbers may not sound very impressive to you but for us they are numbers of very significant concern. Most of the HIV infection -- most of the cases recorded have occurred in the last year and a half. Five years ago we virtually had no AIDS cases. We had no HIV cases. Recently we had a team of WHO folks visit us. And they spent about a week with us. And we developed a medium term plan and we looked at what is happening with HIV in Guam. And they concurred with our position. Our position being that Guam currently is a low prevalence jurisdiction in terms of HIV infection. But it can rapidly turn into a high prevalence jurisdiction if the right interventions aren't made at this time. 10 14 12 13 14 15 16 17 18 | 19 20 21 22 23 24 25 88 In terms of who lives in Guam. Essentially 45 percent of the population is made up of Chimoros (sp). They are the indigenous population. Filipinos make up about 20 percent of the population. Caucasians about 15 percent. Most of the Caucasians however are with the military. We have a significant Korean population. A Chinese population. A Japanese population. And a Vietnamese population. So, we certainly have many concerns in terms of cross-cultural perspectives. In terms of risk factors and what is happening on the island, in terms of sexual orientation it is probably fair to say that the islanders -- and we are more sexually active than what you would find in the states -- you find that there is no acceptance of individuals who are gay. Although that is changing. But not changing very quickly. We have a very high rate of teenage pregnancy. We have high rates of gonorrhea. We have virtually no acceptance of condoms -- or very little acceptance of condoms. So, in terms of the future of Guam we have many, many concerns. Also, one of our most significant concerns is that we currently have a major immigration occurring from the Federated States of Micronesia. Some —— 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 89 are in the area of 10,000 individuals this year will relocate from various states of Micronesia to Guam. Guam is currently undergoing an economic boom. There are jobs. In other parts of Micronesia this is not the case. The Micronesians -~ and when I say Micronesians there are many, many cultures within the Micronesian culture. It is important to understand. But in general the Micronesian culture in terms of its sexual orientation believes that multiple sex partners is something that is rather good. They have no tolerance for condoms. They have little education in terms of AIDS -- little understanding of AIDS. I was once told a story by a Micronesian -- not a story but actually happened on one of the Micronesian islands. A young lady had returned from the states and it was rumored that she was HIV infected. But that did not stop many men from having sexual relations with her. And it was their opinion that although she might be infected they felt it would be an insult to her if they were not involved with her. So, the attitudes throughout Micronesia have a long ways to go. And if these attitudes are not changed, the problem in Micronesia as well as Guam could be very, very significant and very serious. In Guam we also have an active sex industry. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 90 We have over a million tourists a year at this point in time. The sex industry is not as significant as you will find in some parts of Southeast Asia. But nevertheless it exists. And it is another problem for us. I think that the message that I would like to give is first off in terms of financing Guam and the territories as well as the entities in Micronesia are currently facing cutbacks for counseling and testing. And it probably couldn't have happened at a worse time. In Guam we have just begun to get our program together. We have just begun to get some type of response from the community. And I think we are just beginning to make inroads. I believe that Guam needs to stand on its own. And Guam needs to make its fair share in terms of the funding of its programs. But nevertheless we are looking at a 25 - 30 percent cutback in our counseling and testing program. We are looking at 25 - 30 percent cutback in terms of funds for education. And, again, we were just getting things rolling and we are facing these cutbacks. That is the situation in Guam. I would like to talk a little about our Micronesian neighbors. The Northern Marianas have reported three AIDS cases and two HIV cases. The Northern 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 91 Marianas -- the situation is quite similar to that you find in Guam. They are going through an economic boom. They have a significant immigration coming from both the Philippines as well as from throughout Micronesia. The Federated States of Micronesia have reported two cases of HIV. But as I have indicated earlier they are very ripe for very extensive spread of HIV if appropriate interventions aren't made. The Marshall Islands have reported five cases of HIV. But those are all within the military population. The Marshall Islands are actually hundreds of atolls spread through hundreds of square miles. The fact that the cases were in the military does not mean that transmission did not occur with locals since obviously the military socializes with the local individuals. Palau which is still under the trusteeship of the United States is very economically depressed. They have an iv drug problem. They haven't reported any HIV at this point in time. But it is only a matter of time. I think, again, in quick summary, we are easy to forget about. Most people aren't even cognizant of the fact that the Northern Marianas are part of the United States. Most people don't realize what the trusteeship in terms of Micronesia is or was. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 92 I think it is essential that we open up lines of communication. When I got the call the other day and was invited to this I was somewhat shocked. We never got calls from Washington. We rarely get invited to any type of forums. But I am very pleased that that occurred. Nevertheless, I think you need to hear from the Micronesians. I can't really speak for them. Their cultures are different. Their concepts are different. And their problems could be quite extensive. American policy in Micronesia has at best been very inconsistent. Because of American intervention Micronesian culture has changed drastically and most of it not for the good. I think if we ignore Greater Micronesia at this point in time and if a major HIV epidemic does occur in that area, that would be extremely sad. Because it doesn't have to occur. At least most of it doesn't have to occur. So, I would ask you to please not forget us. Our problems are real and the people are real. And just quickly I want to allude to our health systems. Guam and Northern Marianas are relatively well-developed. We have modern hospitals. We have physicians. Things of that nature. The other entities -- Palau, Marshall 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 93 Islands, Federated States of Micronesia -- they have significant problems with primary health care. I have no idea how they would handle an HIV epidemic. It would be just -- just be disastrous. So, the conditions in Micronesia in terms of health provisions are seriously lacking. Thank you. MR. CHANG-MUY: Thank you, Wayne. In order to give the other people time to testify -- and more importantly, Commissioners to ask questions -- I would like to remind the witnesses to keep their comments to five minutes. Before we go on for a five minute overview of the situation in Hawaii Suki asks for 30 seconds. Suki? MS. PORTS: I just wanted -- if I am leaving while somebody is speaking, it is not out of protest in what you are saying. I did promise to leave earlier. But I would like to share with the Commissioners that I have never in all my five years of working in this area been with a group totally Asian as these testifiers are -- and Pacific Islanders. And never have we had as many young people share with us their very personal issues. And I don't know if you understand the import of this. And I must say that you need to understand it because it is very rare and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 it is an honor for all of us. MR. CHANG-MUY: ‘Thank you, Suki. MS. KITANO: Aloha and good morning. My name is Kerrily Kitano, presently the AIDS activities coordinator for the University of Hawaii's student health service. I am formerly from the San Francisco Area, both working at the Asian AIDS Project and APICHA in another lifetime. I have been doing prevention work in Asian and Pacific Islander communities for a number of years now and still very concerned that the word is not getting out to our people -- gay and straight and young and old and all the different ethnicities and in different regions of the country. Part of that is our own cultural denial. Part of that is a number of different things. But I think what I am going to address today mostly is the "R" word --~ racism. In Hawaii -- and myself going there and being a newcomer to Hawaii -- I have been there for a little over a year now and actually have lived there off and on since I was 10 years old. But I have been there for a little over a year. And I went in that community with a certain number of expectations. That there is this huge Asian and Date hd 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 95 Pacific Islander population. That there would be materials there that we could use. That there would be leadership there that we could follow role models, programs, et cetera. And instead what I found there, I mean, was the shock of a lifetime. HIV services there largely are all provided by Caucasian people for Caucasian people. I want to repeat the statistic that Mr. LTinuma articulated earlier. We make up anywhere from between 65 to 74 percent of the population in that state. And yet we have no services directed toward our communities. One result has been the forming of a coalition. The word kalakoa in Hawaii means of many colors. And we have formed a coalition called the HIV Kalakoa Coalition for People of Color. It seems kind of ironic that we need to do this. That we are considered a minority and an underserved ethno-cultural group in a land where we have so many of our faces. The materials that I £ind there -- the educational materials -- again, they are from the mainland. They don't target Asian or Pacific Islander people. And if they do target Asian and Pacific Islander people, it does not take into account the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 96 different regional differences. That, I think, only living there you can really start understanding what those are. In Hawaii Asian and Pacific Islanders make up 20 percent of our state's AIDS cases -- which is quite different from our national statistic. And yet, oftentimes, the national statistic is quoted. And as a result people in our communities hear that and still think we have nothing to worry about. And funding also reflects’ that. I think the importance of the coalition -- and, again, the irony just needs to be underscored. So, I will say it again. And one thing that I am going to highlight -- and I am not going to talk much about all the other millions of issues that are so poignant because so many of my colleagues have already gone over them. And I don't have that much time. But I do want to talk about our clinical trials project because I think this really illustrates very importantly the racism with what we are trying to work with in Hawaii. The University of Hawaii received a grant to begin an AIDS clinical trials unit. There were three grants awarded. One was, I believe, in Washington, D. C., focusing on black communities. There was one with the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 97 University of Puerto Rico focusing on the Hispanic communities. And the University of Hawaii ~-- my understanding -- being focused on Asian and Pacific Islander people. Now, the requirements for the grant stated that all you had to do was have a minority institution with an enrollment of 51 percent people of color to qualify. So, the University of Hawaii was able to qualify for that given our 65 percent Asian Pacific Islander population at the university. A community advisory board was formed to ensure that participation and access would be had by the minority communities. This community advisory board started in November of last year. Not one Asian or Pacific Islander person sat on that board. I was invited as a member of the HIV Kalakoa Coalition to sit on that board come in January of this year. We were allowed one representative. I sat there in a room with 18 people the only Asian Pacific Islander representative. There was one other black woman and 16 Caucasian people. Now, this ACTU is supposed to be outreaching Asian and Pacific Islanders as well as other minorities. And how they defined minority in this grant is basically 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 98 anybody who is not a white man. And if you are a white man if you use iv drugs, you are also considered a minority. Some of the language and the definition very much works to our disadvantage here. We did see a copy of the grant. It uses statistics for Asian and Pacific Islanders all throughout. A real emphasis. This is who we want to study. And yet, this is the reality. We don't have any representation. We have no voice again. This is the state of Hawaii where we are the majority. In March -- we meet every two years. The community advisory board had two people. And now, we are struggling and -- copies countrywide and alerting the funding agencies and trying to get assistance from the federal and national community at large because we need that assistance. I think I will just leave with the basic thing that I have learned in doing HIV prevention and education work in our communities -- no matter what community it has been. And that is plan with us, not for us. I know my colleagues have said that. I think it just bears repeating -- to continue saying that. Thank you. MR. CHANG-MUY: Thank you, Kerrily. Fora 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 99 five minute perspective on what is going on in New York and the East Coast Joanna Omi. MS. OMI: Good morning. My name is Joanna Omi. I have worked with the Mayor's Office on health policy in New York City. And I am a founding member of the Asian and Pacific Islander Coalition on HIV / AIDS in New York. The other speakers have raised so many issues this morning that it is difficult for me to think of a way to present an even coherent stream of thought in the next few minutes. But I will try to do that. I am a sansei also. I am quite surprised at the number of sansei -- at the number of Japanese Americans in the room. I think it reflects the number of cases of diagnosed AIDS among the Japanese American population within the Asian and Pacific Islander communities. But it is unusual for me to sit in a room with this many sansei. And it feels very good. Just a moment on my background because my background feeds my life and creates who I am. Both of my parents were interned -- well, it is a little more confusing than that. Both of my -- members of my family on both sides were interned although I am hoppa (sp) -- I am half Japanese American and half a 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 100 Caucasian. My mother, who is Caucasian, was born and raised in Japan. Her father, my grandfather, was interned by the Japanese in Japan. And my father, who is Japanese American, born here in California, his whole family was interned here in California and in other places in the Western United States. They were dispersed throughout the Western United States during their internment. And my father was drafted and fought in the 442nd in Europe in the most heavily wounded and most highly decorated battalion in the Second World War. Growing up with that -- growing up as a bicultural person in the United States I feel that I am particularly marginalized and understand very deeply and personally what it means to be outcast from society at large and even within my own ethnicity. And as I see the growing number of individuals of my generation outmarrying as my parents had the courage to do many years ago I feel very personally the threat of continuation of my race. And I understand in a very different way what it means to be -- when people say genocide I understand it in a number of different ways. And I feel it very personally. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 101 I wanted to also say that I echo Suki in her -- in the respect that she feels for the people who have come out in the variety of ways in this forum. You really need to understand, members of the Commission -- you really need to understand what it means to come out as a substance abuser, as a person with AIDS or HIV illness, as a gay man. To be Asian and to come out in any of those ways is only something that can only recently happen. So many of us cannot come out about any of those issues as Asians. We just cannot do it. Even though we know as activists, as social service and health service providers, as government individuals and people who have been in public health for many, many years -- we know what it means when one person provides an individual story. We know how many people that helps. But as Asians we cannot come out. And I want to emphasize that. Fernando said I would speak about some East Coast issues. So, I will get to those now. MR. CHANG-MUY: One minute. MS. OMI: In New York City, as in many places in the country, Asians and Pacific Islanders are the fastest growing ethnic population. We have grown from about 3 percent of the population in New York in 1980 to over 7 percent of the population in the most recent 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 census. There is about 512,000 of us now. The waves of immigration between the '70s and the '90s have really shifted the population in New York -- as it has across the country. Whereas in the '70s the predominance of Asians in the United States were Chinese in the ‘80s it became Japanese. And it is now in the '90s the greatest number of new immigrants are Filipinos. However, in New York City Chinese and then East Indians -- Asian Indians are the greatest number of Asians. And that diversity and what that means for immigration across the country and the different looks that immigration takes on then has great implications for what we do in terms of our services. More than 80 percent of the Asians and Pacific Islanders in New York City are foreign born. And the greatest increases in the Asian populations in New York have been in the outer boroughs. And by the outer boroughs we mean New York City is comprised of five counties ox five boroughs. Most of that immigration is happening outside of Manhattan which has the greatest concentration by far of all HIV related services. In New York, again, there is an 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 103 overrepresentation of Filipinos among diagnosed AIDS cases. And East Asian Indians are the second largest number -- are affected the secondmost. There has been a 20 percent increase in cases among Asians and Pacific Islanders in the last year alone. And a predominance of all of the cases in New York among Asian and Pacific Islanders are in the first generation. Even so, 24 different countries of origin are represented. We have over 200 cases now. And 24 different countries of origin are represented. Even though a predominance of those cases are among men who have sex with men -- which is how we collect the data in New York -- every transmission category is represented and every borough is represented. There is also a frighteningly large -- especially among women -- number of cases where we don't know what the mode of transmission is. Moreso than in any other ethnic category we cannot collect that information on transmission among Asians because we can't tell you. And quickly --~ if I could just have a minute to tell you what all of this means in terms of our needs. When you look at the signatories on the letter that is before you £Erom this group there are 44 organizations represented. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 104 Only three of those are from the East Coast. There is a -- relative to the East Coast the West Coast is better organized and has better resources. We are not going to fight with our West Coast community for those dollars. But we must have services on the East Coast -- where the second largest number of Asians in the United States are located. A number of us have met repeatedly with different federal agencies with groups from within -- CDC and we have been told repeatedly we need to collaborate -- interagency we need to collaborate within the federal structure. How can we do that? How can you help us do that? We need you to collaborate as well. We have to be able to have systems which are collaboratively designed which help us to look not just at HIV and not just at a single ethnic group but help us to develop the organizational infrastructure so that we will be able to fight through this epidemic as well as all the other multitudes of epidemics and issues that will arise in our communities. We need to be able to come together. We are an international community. We need to be able to come together at least nationally if not internationally repeatedly so that we can share ideas. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 29 105 As you were saying, we need to be able to take the best of what we have learned in other communities. And the only way that we can do that when we are as diverse and as spread throughout the country as we are is when we can come together and talk in the same room. We need to -- Billy Gill talked about not being able to find services in San Francisco. San Francisco is the model for HIV services. And Billy Gill was not able to find services and was faced with horrific discrimination in San Francisco, the most international of all cities. What does that mean for the rest of us? There is a critical mass of funding. But the most difficult issue that we face is that we have a very diverse community. And we know that we need dollars in each of those ethnic groups across all of the transmission categories and across all of the geographic areas that are so hard hit by the epidemic. There is a critical mass of funding though that you need in each of those areas in order for there to be any outcome that is measurable. And I am urging that funding be adequate to provide for that critical mass rather than in an effort to target Asian and Pacific communities the dollars are spread so thin that nothing is able to come of it. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 106 And finally, I would just also emphasize that particularly for Asian and Pacific Islander communities we very much need to be able to define our own models and to define success ourselves. There is a very successful Alcoholics Anonymous program in the Marshall Islands that has adapted that model to the local needs. And part of that adaptation has meant that for those individuals who are participating in the program abstinence is not a lifelong endeavor. Not drinking for that day is sufficient. And individuals in that program are not looked down upon should they think -- I may drink tomorrow, I may go to an event and drink, I may drink at another point in time but I am not drinking right now. And that is success in that model. Those types of adaptations are critical for the success of any types of programs in our communities. And just in closure I would like to say that in New York with the Asian and Pacific Islander Coalition on HIV / AIDS we have a very strong sense of urgency about the need to be more inclusive. And it makes me wonder how all of us -- I am not sure how I was brought to this table, what I was supposed to be representing as I came here. But for all of us the need to recognize the incredible diversity of 10 11 12 13 14 15 16 17 | 18 19 20 21 22 23 24 25 107 our communities and to have that diversity recognized by government entities and by funding entities will, I think, spell the success or the failure of all of our efforts in the future. Thank you. MR. CHANG-MUY: Thank you. Shifting back to the West Coast to testify is Lori. MS. LEE: Yes. Thank you. I would like to welcome all the Commissioners who are coming from out of town and also the other guests from out of San Francisco to San Francisco this morning for the hearings. My name is Lori Lee. I ama fourth generation Korean born and raised in Honolulu, Hawaii. And currently I am the direct support coordinator of the Gappa Community HIV Project here in San Francisco. Gappa Community HIV Project is also known as GCHP. This program offers emotional support, practical support and advocacy targeted to Asians and Pacific Islanders families and their partners regardless of ethnicity, gender, sexual orientation to assist them with their problems dealing with HIV. I would also like to add the program serves a variety of clients of mixed heritage too. I think I was really invited here to speak mostly about this topic -- the direct support program model -- which to my understanding is the only program of 10 | 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 108 this kind in the United States at this time. But before I give oe observations about this I would like to raise a point about this hearing in general. The other day I! was speaking to Tom Kim who is the executive director of the Korean Community Service Center where I have been very fortunate to be able to do some AIDS related work in education, advocacy and referrals. And we both noted that I am the only Korean in this hearing. And thinking about it, you know, I think we came to an agreement that this lack of Koreans at the hearing symbolizes the state of AIDS services among the Korean communities here in the United States. As a caveat I would like to state that as I would not profess to represent the entire Asian Pacific Islander communities, you know, I would similarly not profess to represent the entire Korean community. But before I begin to talk about direct services offered here in San Francisco I would like to raise some observations about the Korean community in the United States and present for the record here some fact sheets and a brochure produced here in San Francisco which is I believe a model of culturally sensitive basic AIDS educational brochures. And it is the only brochure funded by the government through a Korean center in the United 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 109 States. First I would like to talk about the Korean community in terms of its immigrant rate. The Koreans have the second highest immigrant rate of all Asian and Pacific Islander groups in the United States. In terms of how recently Koreans have arrived 90 percent of the Korean population has arrived in the United States within the last 11 years. Homophobia is a big issue. Homophobia in combination with a lack of social services for Koreans has made basic AIDS education very difficult to deliver. And finally, as I have stated before, there is only one Korean social service center in the United States which has been funded to produce education and prevention materials. A Korean community service center in San Francisco. They have been funded to produce one brochure and one poster -- which unfortunately I wasn't able to bring. Now, I would like to talk a little bit about direct services for Asian and Pacific Islanders in the United States -- which is not a highly developed or examined area. And the information that I am about to present is primarily drawn from my own perspective as having managed the direct services program here in San 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 110 Francisco. To reiterate a point, the Asian and Pacific Islander communities in the United States vary considerably in terms of the development. You can Classify them in terms of are they running, walking, or crawling. Regarding AIDS services some communities have yet to develop their own basic AIDS education messages while other communities are able to provide support services to people living with HIV disease. Alienation within communities is tremendous. A person living with HIV disease faces tremendous alienation within their own ethnic and cultural communities. The stigma can be compounded by the revelation that a person has engaged in homosexual sex or has used injection drugs. To my knowledge, the Gappa Community HIV Project's direct support program is the only governmentally funded group in the United States to provide support services targeted to Asian and Pacific Islanders meeting the diverse needs. And the program provides as well as possible services to a wide spectrum of people -- gay, straight, non-sexually identified, active substance users, people 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 i111 with past substance abuse uses, women and some children. Really the heart of the program is the over 20 trained volunteers who provide the bulk of services through this program. And actually some people -- Velma and Paul specifically -- work in the program. And other folks in the audience are volunteers with the program. Meeting the diverse needs of the client population the idea involves a lot of networking. I work with a variety of AIDS, Asian and Pacific Islander and social services agencies to begin to try to meet some of the needs of clients. And no one agency is ever going to be able to meet the needs of a client. And finally, I want to talk about some nontraditional methods of providing services. Providing AID support services to what is, I guess, called nontraditional communities involves employing nontraditional methods. In particular, a major component of service delivery involves outreach to publicize services and also, very importantly, to create a trust between clients and service providers. You can match service with a face or you can know where this is going. Without these efforts to outreach the clients services across the HIV spectrum cannot begin to be delivered. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 112 And as we try to go for increasing monies to try to expand the services to include people from HIV positive asymptomatic across the HIV spectrum that is something that we really have to stress -- that a good deal of our program will be outreach. A good deal of the program is beginning to -- before we can even intake people to the program we have to reach them and access them. Thank you very much. MR. CHANG-MUY: Thank you, Lori. You have heard testimony from the Pacific Islands, from the East Coast, West Coast. Now, we would like you to hear some testimony about specific groups. Tony, if you will talk about Southeast Asians? MR. TONY NGUYEN: Hi, everyone. My name is Tony Nguyen. And I work for the center Southeast Asian -- Settlement. And I can talk a little bit about my background. Okay. I have grown up in Vietnam. We have a big family -- five brothers and five sisters. And I am the youngest and I am gay. That is very different to talk about in a family about -- especially about sex and drug in a family. And the first thing when they know I am gay then they really deny it and really lie, okay -- you are not my son anymore. Then that is really difficult. Then when 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 113 they find out I am gay then they ask me -- okay, you have AIDS. Then that is a big issue for Vietnamese. Then all my family they try to deny. They try to make up a lot of stories. That is my choice. They don't think that is okay. They think maybe I wake up in the morning and I will tell my father -- okay, today I am to be a gay and tomorrow I wake up and be a straight. They don't understand it. And that is a big issue for the Vietnamese. They don't understand it. They hate the gay people or lesbian or transvestite, whatever. And that is why I am trying to be here with everyone to talk about the culture sensitivity. And also, my job -- I am working for the centers -- I do an outreach worker. Every day I go out and talk to people like in restaurants, one by one, whatever. And the problem I have that more people they don't understand about the condom. They don't think that is the big problem. They don't think they have to use a condom. And they think maybe that not the disease everyone can get. They only think that a gay disease. I mean, after 10 year -- 11 year people still think about 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 114 that. That really sad. I mean, really scared for me -- for myself. When I go out and talk about that then that is the one thing. Then about HIV a lot of it not being HIV positive. Then when we go and talk about that and they don't take -- I have a group of Vietnamese. Then every time we try to talk about gay -- everyone have to take a blood test. And the question everyone ask -- after I take the test if I positive nothing to be done to me. I mean, that really important. I mean, they don't think -- they don't trust treatment Western. And that is why most gay men they don't want to take a chance to take a test because the test -~- I mean, to be called a positive that is a death sentence. I mean, they think they can die tomorrow. I mean, why you have to worry about that? I can enjoy today, tonight with my partner, whatever. Why you have to worry and take a test. And that a big issue we have to be concerned about that. Also, I am involved with a lot of people. I go inside a lot of massage parlors. [I can tell you about in the Tenderloin neighborhood -- have about 15 - 20 massage parlor. About 15 up there owned by Vietnamese. Then how many people working in there that we don't know what they are doing inside there. One time 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 115 I go there and I heard a lot of people tell about -- we don't use a condom, we don't need a condom. The Vietnamese they said now that is not for Vietnamese. That is for American. We don't have that kind of disease. And we don't have any gays Vietnamese die from AIDS. And I can tell we have nine people die from AIDS in San Francisco. And over 200 Asian -- until now. I talked with a lot of people. Yesterday I taiked with some doctor. And they don't think that is a disease that everyone can get it. They only think that is a disease for only the gay. Then only for white men. Whatever they said. And that very upset me. I try to do my best. But, you know, the problem we have only one outreach worker in San Francisco -- and only one. And sometimes San Francisco go to San Jose about 50 miles. About 70,000 people Vietnamese live there. They don't know nothing about AIDS. That really basic. My mom one day I come visit her sister. Okay, Tony, you be careful every time you go to public toilet you have to be careful, maybe you can get AIDS from that. That really basic thing. I mean, everyone can know -- doesn't know at all. And that very, very scare me. That is why I am very pleased to be here and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 116 hope we can get a lot of agency here -- we talk the same way. We try to -- for Cambodia and Laos. They don't have any people to help them. At least I have one people Vietnamese but they don't have any Cambodian or Laos can speak their language. And they can do a full time job and do outreach. At least can show them, okay -- everyone can get it. That though -- the message. I want to send every single person today. Okay. Thank you very much. MR. CHANG-MUY: Thank you, Tony. For more perspectives on Southeast Asian provision of services, Nga? MS. NGA NGUYEN: Yes. My name is Nguyen. I am a refugee from Vietnam. I have been in this country for 15 years. I have worked for the past 10 years as a public health nurse. And as a health provider I cannot help but being concerned about the lack of information, the lack of knowledge and awareness about AIDS among the refugee population specifically. Because I work with them. But also first generation like me -- you know, my sister, brother, cousins and everyone -- they just don't -- even though they speak English but they just don't want to deal with the issue. There is a lot of talk about diversity here. 10 11 12 13 “14 15 16 17 18 19 20 24 22 23 24 25 117 And I think we need to just kind of bring us all down to the same level because we are all human beings. And Asians, like everyone else, are sexual human beings. And we obviously exhibit the same high risk behavior. And we need to acknowledge that. So, I am very, very concerned. And obviously as a health provider I can see that we are almost like following the same pattern -- if not, we are already, you know -- just developing the same patterns of HIV infection among Asian like in the other minorities like Hispanics and blacks. We certainly share some common factors. We are -- there is low social economic status. I certainly don't see too many rich Asians where I work. And we have lack of access to health services. We have the language and the cultural barriers. So, you know, I am here to say that we need education out there. And I am not just talking about pamphlets. Pamphlets don't teach. We need outreach. We need bilingual ethnic workers out there in the community to work with these populations. We need to be -- the reason I am asking for ethnic and bilingual is because basically that in itself would just kind of -- see, I am having problems with language. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 118 That in itself would just kind of compensate for the cultural barriers, you know, that we are seeing. You do need to come from -- I, myself, am doing some AIDS education and outreach in the refugee population. And I have to say there is a lot of cultural barriers that we need to work with. And so, being Vietnamese I think is tremendously helpful because I know where these people come from. They have never talked about sex before. They have never dealt with any of these issues. So, you just need to talk with them at their level and just work your way up. And of course there is definite other considerations. But I don't have time to go into. The other issue I would like to make is early intervention and treatment. I think in our community -- in the Asian community, like Tony was saying, diagnosis of AIDS is a death sentence. And a lot of people have not yet realized that early diagnosis and early intervention does help. So, we do need to focus on that in our education. And of course going to one major thing is making health care more accessible. I work at the health department in Arlington County. And the STD clinic that we have I rarely 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 119 see any Asian, if not any Vietnamese, using that facility. So, I am not saying that we have to go and train everybody to be bicultural and whatever. But we do need to just sensitize the health care providers about the cultural issues. And I think as health care providers we are all aiming at providing effective services. And I thank you for the opportunity to talk today. MR. CHANG-MUY: Thank you, Nga. We have four speakers left. For perspectives on the Filipino community, Jaime? MR. GEAGA: Hi. Yes. My name is Jaime Geaga. I sit on the San Francisco HIV Planning Counsel -- which was created as a result of the Ryan White Act. I am also the program director for the Filipino Task Force on AIDS. As was said already by other speakers, Filipinos comprise the largest Asian ethnic group in the U. S. today. I think I have also heard that Filipinos have the highest incidence of AIDS not only in San Francisco but also in New York -- which I wasn't aware of. And I think aiso in Los Angeles. That information -- I don't know what that information is for in other cities like Chicago, Texas and Hawaii -- if they are published. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 120 What I would like to talk to is how maybe here in San Francisco we have tried to bring to bear the diversity of our Asian and Pacific Islander communities that we are trying to impress on the Commission to not only appreciate and acknowledge but also be sensitized and actually hopefully to translate into policies that will have tremendous impact on how delivery of services goes to the client. In San Francisco we have ethnic specific HIV prevention programs as well as services which I think the policies of the health department in collecting data that is ethnic specific has helped us to see what the incidence rates have been. Not only do we have ethnic specific programs, we also have had some surveys that have been conducted to establish baseline data on the knowledge, attitudes, beliefs and behaviors of the Chinese community, the Japanese community and the Filipino communities. We also have baseline data on the knowledge, attitudes, beliefs and behaviors of Filipino gay and bisexual men along with Latino, Hispanic gay and bisexual men and Native Americans. Now, this I think are all very important in terms of assisting our work. We have this baseline data to determine whether our work is effective two - three 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 121 years from now. But unfortunately I think this is only unique to San Francisco and not at all to other parts of the country, as we have heard across the room. And I think that is the problem I would like to highlight as I talk about our efforts and work here in San Francisco and how we have tried to really implement as we have taken the responsibility to take our diversity and address it in its detail. Because as we talk about the big picture it is really -- the end result is the client who is very specific and ethnic specific however. And that is what makes a difference. So, I think diversity has to be translated to data collection. You know, national policies have to be established to begin to reflect that so it has some influence on the local level. Maybe not for San Francisco because we already have those enlightened policies in place. The same way heterogeneous, et cetera. The problem with maintaining the status quo of just leaving it on the level of Asian and Pacific Islander is that it puts the onus on our communities to figure out how to divide the very scarce and small resources that we have to begin with. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 And it is easier for the legislators -- the policymakers -- to kind of just lump us all up into one big category and not have that full appreciation of how we are going to implement these programs in the concrete. That is the implication of the status quo. I think that is my main point. And I hope I have gotten my message across. Thank you. MR. CHANG-MUY: Thanks, Jaime. We would like to conclude with the last three speakers by shifting to general issues. Dorothy will talk about education and funding issues. Dean will wrap up with language. And John will conclude with issues affecting youth. Dorothy? MS. WONG: Okay. Good morning. I would like to welcome the Commissioners and the other panelist members to San Francisco. My name is Dorothy Wong. And I am presently the program director for the Asian AIDS Project. And we provide education, prevention and outreach services to the Asian Pacific Islander population. We have language capability in Mandarin, Cantonese, Tagalog and Thai. And in addition to the general community we have offered to outreach to primarily monolingual immigrant gay, bisexual men and outreach to API substance abusers. 10 11 12 T3 14 15 16 17 18 19 20 21 22 23 24 25 And we have been able to access a lot of API women in the sex industry -- which includes street prostitutes, women in the massage parlors. San Francisco AIDS services have been touted as the model program in the country. And I think a large measure of its success is due to the community support that has developed to rally around fighting this epidemic. I think in the Asian Pacific Islander community, you know, we are several years behind fighting the epidemic in relations to all the other communities. Largely because the numbers did not show up in our population until later in the epidemic. But I wonder -- there is a part of me that guessed that Asian Pacific Islanders were affected from the beginning but due to a lot of the cultural issues that we have to contend with that a lot of the Asians did not report that until they were too sick and, you know, just had to get care. Today there are about 210 cases -- reported cases of AIDS in San Francisco with over 80 percent of those cases being gay and bisexual men. And, as you heard, we are just beginning to develop those services to meet that need. I mean, direct support services are just recently funded. And now we are starting to look at what 10 11 12 13 14 15 16 17 18 19 20 2) 22 23 24 25 124 early intervention what sort of medical services are needed for our population. I think what particularly concerns me is that now with funding becoming very tight and very competitive that I am beginning to notice that funding sources are beginning to prioritize what will be funded in the future around AIDS services. And I am particularly concerned that because the Asian numbers are low that we will have a lower priority for funding for all spectrum of services in our community. And I think that is the real concern. Because the rate of increase in our community -~ it is increasing. I mean, in San Francisco the API community has the highest rate of increase in reported AIDS cases. And you have heard about the diversity of the API population. And I also want to highlight the fact that the API population in San Francisco constitutes almost 30 percent of the population. And that is a significant number of people to consider a low priority. Another issue I wanted to deal with was the issue around the importance of education. I think there has been enough testimony here to talk about, you know, the large degree of misconception that is still prevalent in our community. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 125 I think the issue around the difficulty in talking about AIDS in our community. And we are just starting to make headway. I think it is encouraging to see the large number of people that have turned out to testify. You know, I think it highlights that the community is turning around. But I think that we still have a long way to go. And now is not the time to stop funding us, you know. You know, the issue around the model minority -- you know, you have heard that many, many times. And I think a lot of it is often perpetuated by our own community. You know, I think our community -- it is very much in our culture to present our best image and not to air our dirty laundry before the public and before other communities. I think for me personally while there are many values and beliefs in my culture that I am proud of I think I find it very disheartening to see a cultural belief and value that is contributing to the detriment of my community. And that is something that we have to contend with as AIDS educators. And I think in that sense the Asian Pacific Islander community is fighting not only the AIDS epidemic but its own community. So, I really hope that the Commission will look at the issues that we are contending 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 126 with and take into consideration the work that we have to do and not have us be a low priority in future funding for services. Thank you. MR. CHANG-MUY: Thank you. Dean? MR. GOISHI: (Japanese phrase.) Good morning. My name is Dean Goishi. I ama sansei, third generation gay Asian Pacific Islander, Japanese American. I am a product of Camp 3, Poston, Arizona. Even though I have less hair I am younger than Suki is. I am project director for the Asian Pacific AIDS Education Project in Los Angeles. This is a consortium of six Asian Pacific Island agencies and organizations providing bilingual HIV education and prevention programs in seven Asian Pacific communities -- Chinese, Japanese, Korean, Filipino, Thai, Vietnamese and the gay Asian Pacific communities. We are also providing unofficial educational materials in Cambodian, Lao and the Tongan communities. I am also the chair of the AIDS intervention team of the Asian Pacific Lesbians and Gays. The Asian Pacific Lesbians and Gays is an organization formed 10 years ago. And the AIDS intervention team was formed over three years ago to provide HIV education and prevention information to the gay Asian Pacific community in Los Angeles. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Aside from the denial of HIV and the homophobia and -- you might say -- homoignorance existing within the Asian Pacific communities language remains one of the highest barriers to effective HIV education and services and HIV health care. In Los Angeles and Southern California there exists the most diverse numbers of Asian Pacific communities in the United States mainland. In 1988 over 24 separate and distinctly different Asian Pacific communities were identified -- all speaking different languages and dialects. Los Angeles has some of the largest numbers of specific communities outside of their home countries -- Tongan, Samoans, Koreans, Cambodians, Vietnamese, Laos, and so on. In the 1990 census we showed that there are one out of 10 persons in Los Angeles County are of Asian Pacific background. And that is probably undercounted. Of this Asian Pacific population most are recent immigrants. And these communities continue to grow in numbers. In order to reach 90 percent of the communities we have to speak 10 different languages. Of those I mentioned we have to add Samoan. Almost all of these communities there are 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 128 large monolingual populations. Over 90 percent of the Vietnamese, Cambodian, Lao and Thai communities are monolingual. Over 80 percent of the Korean, Chinese, Filipine communities have two other dialects in Los Angeles -- are 80 percent monolingual. To be diagnosed with HIV diseases in Los Angeles County and not be able to speak English is a disaster and a very heartbreaking situation. A very large number of Asian Pacific Islanders infected with HIV rely on the county system for medical services. Many go to their family doctors because of the language situation. However, they have to go to the county system for HIV services. There are very few Asian Pacific Island doctors that are knowledgeable in HIV. There are too many other health concerns is their reason -- TB, hepatitis, general family practices, et cetera. HIV is too new for them. They do not have the time to learn about HIV infections. I know of only three Asian Pacific physicians invoived with HIV in Los Angeles. There is 1-1/2 in research and 1-1/2 in with private patients. Asian Pacific Islanders are reluctant to seek medical help and go to the county systems and will only go to the county systems when they are too sick and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 129 have no other alternative methods of health care. Reluctance to seek early interventions stems from, one, not knowing about early intervention programs and, two, the language barrier about HIV infection and all of the issues surrounding HIV. Once in the county system they do not have any type of Asian Pacific Island language support for themselves or their families. For these service providers to say that they do the best they can by providing any staff member to interpret or translate be they nurses, administrative staff, cooks, or even gardeners is totally inadequate. Knowing the high level of negative stigmas associated with this disease, HIV infection, and gay issues just to have anyone translate is extremely intolerable and terrible. I may recommend to this Commission that federal funding -- that the Commission promote federal funding directly to the local organizations to develop or expand existing volunteer programs such as we have with the AIDS intervention team of providing HIV knowledgeable and gay sensitive pool of translators. Eighty-six to ninety-one percent of persons living with HIV infection in Los Angeles are gay or bisexual Asian Pacific Islanders. Our study in 1989 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 1390 showed that 64 percent were Asian Pacific born PWAs, or persons living with HIV. Federal funding is necessary passed directly to the local agencies and not through state or county agencies because we tend to become diluted and lost in that process because our numbers -- quote, unquote -- are just too small. Presently in Los Angeles the AIDS intervention team is the only Asian Pacific Island organization trying to meet some of the needs of Asian Pacific Islanders. Through voluntary funds from donations and fundraisers we have HIV positive support groups. We just received some funding to do support groups in the monolingual languages of Chinese, Japanese and Tagalog dialects. We have also an emergency financial assistance fund where because Asian Pacific Islanders will most likely exhaust all their personal resources before asking for or seeking help that they are just completely destitute. It normally takes around 30 to 60 days to get into any type of service providing agencies. And by that time they have no rent money, they have no food money, et cetera. So, we do provide a little bit of that. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 131 We also have been able to establish an ethnic food assistance fund where Asian food staples not found in the regular £ood banks are made available -- such as Asian rice, soy sauce and seasonings. A medical assistance fund has also been developed and is currently being used. It is used for both Western medicine as well as Chinese herbal medicine which has proven to be, for us anyway, very effective and has helped keep the health situation -- or keep them from getting more sicker, you might say. Sorry for that English. There are many other issues that I would like to address. For instance, did someone mention the Asian women and how to deal with Asian women and the sexual -- what do you call it -- sexism in the Asian Pacific communities. Translation materials for early intervention programs, antibody testing campaigns, safer sex practices and negotiation programs. We have been told that we cannot do because we have enough translations. And we have to show that we can reach a certain number of people in our programs. And we were told that this is CDC mandated. Is he still here? And with that, thank you very much. I do like to close with a question to the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 132 Commission. And basically it is that you have heard us today and I would like to know what the Commission can do and will do for the Asian Pacific communities and how soon we can expect that to happen. With that, I would like to close but I would like to take one more minute. I would like to address Eunice's question earlier about the translated materials. In our first -- three years ago when we just started our translation programs we did consult with the home countries. We did consult with the consulates that are located in Los Angeles. We received several translations. We only got one from each country. And that was the only official AIDS materials at that time. The reason why we did not look at it or use it is because the translated materials is very derogatory toward gays, the characters that are being used, the terminologies and the phrases are extremely negative toward both the HIV infection methods of transmission and the actual description of gay people. In Chinese I believe it was brought up that the actual sexual acts were translated to chicken sex. The terms for gay people are referred to as sexual deviants. This goes through almost every of the Asian Pacific translations that we looked at. And that is the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 133 reason why we cannot feel comfortable about using materials that are developed in our own countries. MR. CHANG-MUY: Thank you, Dean. Before we give the Commissioners a chance to answer Dean's question on how you are going to follow up we would like to conclude with John Manzon's last testimony on youth. MR. MANZON: I was going to say good morning but it is good afternoon. My name is John Manzon. I am the son of working class Filipino immigrants. And I ama gay man. And I want to say that I am here because I feel the support of especially the Asians and Pacific Islanders in the room. And that is the only way that I am able to give this testimony. I would also like to welcome my sister, Bonnie, who is in the audience. Doing HIV work has been difficult without family support. So, that is why I am welcoming her specifically. I would also like to mention another family member, my grandfather. He went to law school in New York State but was not allowed to take the bar exam because there was a law barring Filipinos from taking the bar exam, So, I think it is ironic that I am here as an advocate for Asians and Pacific Islanders when he as his career wanted to do that and was not able to in this 10 14 12 13 14 15 16 17 18 19 20 21 22 23 24 25 134 century. I am currently a crisis counselor, advocate and case worker at Project Reach, a community based youth drop in center in New York City's Chinatown. I am here to talk about the young people that I work with and to offer another perspective so that you all walk away with the model minority mythology sufficiently exploded. The population of young people -- the Asian young people that I work with are mostly mainland Chinese, Hong Kong Chinese, Taiwanese, but also Thai, Cambodian, Vietnamese, Malaysian and Korean. Most of them are lower income from the inner city and receive public assistance. Some are runaways, some are homeless. The Asian American youth that I work with are in gangs, they drop out of school, they get arrested, they get physically and sexually abused at home, they suffer depression, they commit suicide, they deal with unwanted pregnancies, they take crack and cocaine, they come from HIV infected families and they contract HIV themselves. And they are not the model minority that everybody considers Asians to be. In terms of specific approaches it goes without saying that young people at different ages of immigration, as other people have said, require different strategies, different outreach 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 techniques. If you don't have vocabulary in English for words like sex, vagina, penis, lesbian and gay -- if you don't have them even in your native language, it is very difficult to discuss issues such as HIV. For other recent immigrants only in their native language can HIV prevention and education occur. But while printed materials are critical -- especially in a city like New York City where the API communities are 87 percent recent immigrant -- for young people -- again, depending on the age of immigration -- they won't read materials. They may read comic books about it but there aren't any yet. I£ they are literate in their native languages, then -- if they are not literate in their native languages, something in the language of their parents won't make any sense for them. I work with a 19 year old young man from Malaysia. He came to this country undocumented at age 12. And he hasn't been to school since age 12. He was abandoned by his father and speaks poor English. And these are the young people who need to know about HIV education. And these are the young people where we have to focus our energies and develop those programs not yet developed. He needs to hear the information since he 10 11 12 13 14 15 16 17 | 18 19 20 21 22 23 24 25 136 won't be able to read it. A couple words about outreach and dissemination of information. A lot of people talk about school-based programs and school-based efforts. A lot of young people that I work with aren't in school. They -- or cut school rather frequently. And so, whatever dry stuff they get in school it won't be if they are not there sitting in the classroom -- they are not going to hear it. And even if they are there in the classroom, it is not that they internalize it because of all the cultural factors that people have brought up before me. Many, in fact, know the facts. But they regurgitate them with -- if you will pardon the expression -- a straight face because they don't feel that it really endangers their lives -- the threat of HIV. And the reason that is so is because of one basic faulty assumption -- that HIV might be the only thing wrong. I want to share a few stories. And I will use fake names. May is one of four sisters. She is the third of four sisters. The older two had run away because the father beat them. She is suicidal and abused often. Another young woman, Jennifer -- she is 19. She left home because her brother beat her up. And now, 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 137 she goes out with the leader of a Chinese gang. Brenda, one of four sisters -- she came when she was 8 years old. Her mother is on welfare. And she lost her virginity when she was 12 to a member of a gang. Ricky, who is 16 years old -- a refugee from Cambodia. He was arrested and sentenced to a year and a half in prison. When young people are dealing with all the issues that they have to deal with HIV becomes -- you can't try and convince a young person to say this could kill you when things are killing them already. I want to bring this to the floor because HIV prevention is inseparable from teen pregnancy prevention and from gang prevention and dropout prevention. Young people generally don't have much control over their lives. We need to look at problematic family situations and insensitive school systems and general lack of support. We have to look at what is pushing young people to engage in high risk behavior. In the very least someone to talk to, a safe space -- where problems with parents and sexual behavior can both be discussed. So, I as a service provider am doing HIV prevention work by default. We are not funded for doing 10 14 12 13 14 15 16 17 18 19 20 21 22 23 24 25 HIV. But whether it is dropping out of school or hanging out in gangs or attempting suicide or entering sexually premature relationships or engaging in unsafe sex or drug use they have put themselves at high risk for HIV. HIV in the population that I work with highlights the incredible lack of services. And I cannot underscore it enough that it is the latest life threatening reality for the young people that I work with and for a lot of our Asian and Pacific Islander communities that aren't adequately addressed. So, when we talk about HIV issues we are really talking about a lot of unaddressed health issues in general that we face as Asians and Pacific Islanders. We need funding. We want bodies for outreach. We want bodies for translation. We want bodies to reach the communities. We don't want bodies to make our counts more legitimate so that we can be more affected by this epidemic. One last thing about the model minority. It is a manipulated minority that we are. Manipulated so that we can seem that we are okay and we are not okay. At least the young people that I am dealing with are not okay. And it is because they are rendered invisible by this model minority mythology. It cannot continue. Thank you. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 MR. CHANG-MUY: Thank you, John. We are pretty much on time. And we would like to thank the Commissioners for --- DR. OSBORN: I am sorry. We are on time in one sense. But I am going to have to sort of take over quickly now because we have 10 people who want to talk to us in public comment as well. So --- MR. CHANG-MUY: Would you be able to answer Dean's question before we hear from the public? DR. OSBORN: I will answer it in a certain sense. That is why I interrupted you. Because I don't want to leave you completely disappointed. I will disappoint you with my answer however because it would be unwise for a commission like us wanting to hear, absorb and digest things that we have heard to give quick answers to that kind of question. What we try to do as a commission -- our sole power is the power of persuasion. We don't have pots of money. We have long since been advocating increased resources. You can and have helped and have given us some good things to think about in terms of ways that resources can be used effectively. And we will be looking at that as we develop recommendations both to the executive and to the congress. 10 11 12 13 14 15 16 V7 18 19 20 21 22 23 24 | 25 140 But I always worry -~ particularly with a question such as you asked -- that people may imagine that we have some magic way of helping. And all we can do is promise to listen. I think the Commissioners have listened as carefully as we can to you today. And then, try and be sure that we are as astute as we can be in factoring the very important input that you have made into recommendations that we see strategically may be helpful in a given context with either the congressional or the executive initiatives that are ongoing or that we can suggest. As we have with things like the Americans With Disabilities Act. We were very upfront in other instances. If we can lend a word of support, we do. So, we will promise you to try to be as helpful as we can. I must say I am pleased from some of the comments that have been made that you have done some very important things in group interaction just by being here. And it is one of our hopes in having hearings such as this that that kind of dynamic can also be helpful. That we haven't wasted your time by bringing you here to talk to us when we feel in some ways as powerless as you do -- because you have, in fact, interacted so richly today. So, I am sure that is not what you wanted to 10 +1 12 13 14 15 16 17 18 19 20 21 22 23 | 24 25 141 hear me say. But I think in the interest of process and time we probably ought to -- again, let me express my great gratitude to our moderators, to the group that has been so forthcoming with personal difficulties that we do appreciate. And we need to move on because in terms of absolute time we are very far behind and have quite a lot of other things this afternoon. MR. CHANG-MUY: Thank you. DR. OSBORN: Thank you. I kind of interrupted you there so I could move us along. Did you have --- MR. CHANG-MUY: No. I just wanted to thank the Commissioners for taking testimony. I wanted to ask you to answer Dean's question. And if there are 10 people who want to comment, let's hear them. DR. OSBORN: Good. As I did yesterday, I know some of you may have tight schedules and we don't want to imprison you in your seats having participated with us all day. On the other hand, you are most welcome to hear the public comment with us and stay comfortable -- unless you have pressing schedules. I am going to ask the people to try and stay within two minutes each for public comment. Always people have a great deal more than two minutes of important 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 things to tell us. And so, I always feel uncomfortable asking that. But we have had a very rich day of testimony. And if you can find ways to focus our attention very sharply on your major one or two points, we will probably be better for it than if it takes a little longer. With that having been said, I am going to also apologize for my inability to do justice to some of the names -- and handwritings. The first person who would like to speak is Bonnchon Thepksuysane. Am I saying that recognizably? And I think what I will do is just before you start I will ask David Cho to come to the other microphone so that we don't have transition time problems. And I appreciate your being willing to talk briefly to us. PUBLIC COMMENT MR. THEPKSUYSANE: Thank you, Commissioners. My name is Bonnchon Thepksuysane. I have a very long name. And I work for the Asian Health Services as a community health worker and health educator. I want to highlight some few points. But most of the points I have written it in the statement already. So, to make it short the few points that I want to make here is ~- I am speaking here on behalf of the newest communities -- which is the Laotian, Mien and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 143 Cambodian communities. The reason I say the newest is we are here in the United States for less than 15 - 16 years. My experience working as a community health worker in my own community there are still lot of deny and frustrations about the fact that we don't get enough information about AIDS, how to learn about it, how to seek help from certain services. Things like that. We don't speak the language. Most of our community members don't speak the language. I tell you the experience I have in the classroom when we do the AIDS presentation. We do the outreach as well. When we get in touch with them through the service providers like job training programs and things like that. We go to the classroom. So, we divide it up into certain groups of people. We have the staff who speak certain languages like Chinese, Vietnamese, Laotian and Mien. Things like that. But when we go over there when we start -- here we are. We coming from Asian Health Services. We want to talk to you guys about -- to educate you about AIDS. And suddenly the faces of the participants or audience gets stuck. And some of them even laugh at 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 144 it. They feel embarrassed and ashamed. You can't just go there to the classroom and talk about AIDS but you have to start with build up the relationship, build the trust. Where you came from. Maybe you start about five or ten minutes talking about where you came from and what is your background and things like that. And then, later on the trust was there. And then, I started talking about it. And then we showed a videotape and things like that --~ DR. OSBORN: Can I get you to summarize quite quickly? MR. THEPKSUYSANE: Okay. Yes. I will. The other thing is there were certain groups who were left out when we provided the -- because we don't have enough languages. For instance, there may be Cambodians over there in the classroom. And some of the people ask why not have the bilingual worker to come to do the presentation. And I have to lie to them that we don't have enough funds to hire enough bilingual workers. We will try to get funds to you. fn my heart I feel like I am lying to them. We try to get funds. In our culture it is like lying to them. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 145 And the other thing is --- DR. OSBORN: I am afraid we really have run out of time now. And we have nine other people that we need to hear as well. So, if you have written testimony, we will be very pleased to have that and give further consideration when we have a little more time. MR. THEPKSUYSANE: Okay. DR. OSBORN: Thank you so much for your testimony. MR. THEPKSUYSANE: Thank you very much. DR. OSBORN: And while David Cho is getting ready if Michelle Aldrich would come to the other microphone please. MR. CHO: Hi, my name is David Cho. I als work for Asian Health Services as a Chinese community health worker. About six weeks ago a 46 year old HIV positive monolingual Chinese man was referred to me. He is unemployed, uninsured, has been livi in the United States for more than five years but has never seen a Western doctor. He is living by himself. is very isolated. He is very weak and skinny, has been sick for three months with consistent fever and fatigue, lost 15 pounds. And still it took him all this time to get help. Oo ng He 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 146 Why would a person wait three months to get help? We at Asian Health Services had to refer him to Highland General Hospital. You know why? Because we do not have the money. We simply -- not that we don't want to do the work. Simply because we do not have the money to provide HIV services. Immediately I called Highland Hospital and tell them my poor patient have to wait for additional three weeks for an appointment. When he asked me to go with him to the appointment I explained to him that there is going to be a translation. But he still wanted me to go. I went with him and I am glad that I went with him. Because there is no way that he -- that this poor guy could have gone through the whole thing by himself. With his physical condition and language barrier he is just not able to find his way in the hospital running from wings to wings, floors to floors and rooms to rooms. While we were waiting at the registration counter he suddenly started to feel very sick. He was coughing. He was having shortness of breath. And it was not a pleasant situation for both of us. And at Highland or any general hospital the problem lies on the lack of culturally and linguistically 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 appropriate staff. And I know I am not speaking just for myself. I know this is difficult. But it is possible. It is not impossible that we do the work. That is directly quoting from Mr. Lei Chou. You give us the money. We will show you how we work. We will show you how much we can do. And, to conclude, with a rapid growing API population in the county and the state I really, really think that funding is in dire need for implementing Clinical care as well as culturally and linguistically appropriate services among Asians and Pacific Islander population and Asians serving -- and clinics. Thank you. DR. OSBORN: Thank you very much. Michelle Aldrich. And then Douglas Varanon. MS. ALDRICH: Madam Chairman, Commissioners, staf£E and invited guests, AIDS is the first epidemic the world has had to deal with since polio. The problem of prevention and education is that AIDS put America in conflict with the issues that America has not been able to deal with on an objective basis. The issues of discrimination of people of color and people who are infected with HIV. The issues of sexuality -- gay, lesbian, bisexual and heterosexual. The issues of drug use, the distribution of bleach, needle 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 148 exchange and the medical use of marijuana. The issues of homelessness, poverty, morality, criminality, homophobia, health care policy and the exclusionary policies of our government. In truth the majority of the people in the United States are minorities. Whether divided by geography, culture, color, sexual orientation, or the ability to pay, every group has the right to know the facts presented in a culturally sensitive manner in which language that the population can understand. Laws do not make the person change their behavior or lifestyle. The war on drugs actually promotes the spread of AIDS. Who will survive this epidemic? Criminals who smoke marijuana so they can eat when affected by the wasting syndrome or by the toxicity of AZT. People who change their sexual behavior by use of condoms against the mandates of their churches. People who have access both medically and financially to drug treatments that may prolong their lives. Life is a valuable entity and no member of a selected population is disposable no matter what the reason. The definition of AIDS must be expanded to include medical problems that are unique to women. Women must be included in clinical trials. We must be inclusive, not exclusionary. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 149 AIDS is a preventable disease. But this pandemic requires nontraditional responses. Education must be on the cutting edge concerning sexual activities and drug use without moral overtones. Nonjudgemental education assists people in responding responsibly and independently to changing their behavior. Medical and social outreach -- like the barefoot doctors in China -- will do more to bring health education to the people who otherwise could not be reached because of their distrust of the medical model. Prevention efforts now will prove to be more cost effective and humane than the budgetary saving methods now being used without regard to the consequences of the future. This epidemic --- DR. OSBORN: Could I ask you to summarize and then --- MS. ALDRICH: I am. DR. OSBORN: --- we would be pleased to have that made available to the Commissioners in full. MS. ALDRICH: Yes. This epidemic provides people with the realization of the inner connectivity of humanity. This epidemic gives people an opportunity to bring reality based education without discrimination into the 21st Century. I urge the Commission to be brave and bold 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 and to have the courage to provide the leadership that is needed to defeat the virus that is changing everybody's life it comes in contact with. Our primary objective is to stop the spread of HIV. Everything else is secondary. Thank you. DR. OSBORN: Thank you. After Douglas Varanon -~ Willy Wilkinson will be next. MR. VARANON: I would like to thank the Commissioners for being patient with this testimony. There are a couple of points that I would like to bring out. One is that the lesbian, gay, bisexual Asian and Pacific Islander community I feel has been silenced yesterday by being absent from the testimony. And although the issues were mentioned today, I don't think that it was addressed in a very substantial way. And not all Asian and Pacific Islander lesbian, gay and bisexual people hang out in the same place. There is a lot of different cultural nuances. And so, some of that needs to be investigated and examined in terms of how to do HIV education, prevention services for the communities that are mostly being impacted. So, to that end I would encourage the Commission to allocate funding for gay and bisexual Asian and Pacific Islander community based organizations. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 151 I would also like to request a report from this meeting today. And just to highlight the fact that we are taxpayers. Many of us cannot vote because we are not citizens. And we are relying heavily on you to convey our message to the White House, to congress so that we can impact institutional changes which promote behavioral change in the Asian and Pacific Islander communities. We need to encourage you to mandate cultural competency in the provision of HIV services, fund research and documentation of our diverse cultures. Our movement here is an outgrowth of the civil rights movement which focuses on the African American community. And API communities with immigration and languages are impacted differently by racism in this country. I would request that you promote collaborative efforts. I served on a statewide HIV comprehensive care working group and applaud the Ryan White legislation which mandates half of the funding of Title II to go to collaborative efforts. And to that end also I think that in order to collaborate as a group we have to be able to put forward our perspective -- our own cultural perspective -- which hasn't really been developed yet. We are still in the process of doing that. And with funding from the federal government 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 152 we can accomplish that. Perhaps through maybe an Asian and Pacific Islander symposium on AIDS which highlights different cultural perspectives and results ina publication which can be widely distributed to all HIV service providers -- particularly those with Asian and Pacific Islander populations in their geographic service area. I would also like part of this symposium to explore cultural aspects of the different lesbian and gay bisexual Asian and Pacific Islander communities. Because Filipino immigrant gays or the transsexual or transvestite don't necessarily communicate -- or don't interact with Hong Kong gays, or something like that. DR. OSBORN: If I could ask you again to summarize? We really are pressed for time. And I am sorry about that. MR. VARANON: Okay. So, in order to intervene, you know, we just need the data available that gives us the information on how, when and where it is appropriate to be. Thank you. DR. OSBORN: Thank you. After Willy Wilkinson is Sam Akinaka. MS. WILKINSON: Hi, my name is Willy Wilkinson. I ama health educator and a community health outreach worker with the Asian AIDS Project in San 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 153 Francisco. And I would like to thank the panelists here today for the issues that have been brought up -- especially Joanna Omi for speaking to the issue of hoppa people. Because as mixed heritage people we are oftentimes excluded from the communities that our heritages are of. And to Martin Hiraga for speaking to that otherness. And to Sharon Lim-Hing for speaking to the issues of lesbians and HIV. I think as lesbians we are very hungry for that information on women to women transmission. I am a street based AIDS educator. I work in the Tenderloin, Chinatown and South of Market with injection drug users or sexual partners, women and transgender people who work in the sex industry. And AIDS is really just one more crisis in these people's lives. They are not necessarily going to pick up the phone and ask questions or go to other service providers for help. So, I think this work is so vital because I may be their only connection to this information. While I am helping them with their survival needs I am giving them bleach and condoms and other safe sex materials and saying okay, with a nonjudgemental approach -- whatever you do, 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 154 be safe. That is what I do every day. It is hard to measure this work. But the reality is people tell me -- you know, you may have saved my life. You know, I used to not really think about bleach every time. I thought maybe once in a while but every time now. And this is a sexual partner of a Filipino client of mine. And, as Suki Ports said, women really are more at risk as being infected by men than men are by women. And I would also like to say that women in massage parlors tell me -~ well, if the john is Asian then maybe I won't ask them to use a condom. Because there still is that myth that Asians do not get HIV. So, I would just like to underscore the need for outreach work in our communities and for funding for education and prevention. It is so necessary. It is so vital for our community survival. And it is cost effective. Thank you. DR. OSBORN: Thank you. After Sam Akinaka Vinne Sales will be following. MR. AKINAKA: Good afternoon. My name is Sam Akinaka. And I am a member of the Asian Pacific AIDS Coalition of San Francisco. And I work for the Bay Area Asian Research and Treatment Program which is methadone maintenance and detox programs in the state of California. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Up until recently -- in September I transferred into administration. I was the clinic director for the largest methadone clinic in California -- which is based here in San Francisco for having worked at that site for 13 years. We unintentionally I think perpetuate some unintentional racism. It is not intended. But to mention this issue about minority when in fact in many areas like in San Francisco we are quickly becoming a majority. We might be larger than the other ethnic groups inside that local area, as Hawaii has pointed out. But there is many places -- especially with the new immigrant populations coming in -- there are actually much larger groups. And unfortunately because of this it is cultural that we do not -- that we trust our leaders. That we do not make waves. And in terms of societal problems are only defined by what the community considers a problem that we are underrepresented in terms of services based on the population in those particular areas. For Asians in particular we have a problem with subcultural and majority cultural denial not only around AIDS but substance abuse. And that area it is like hand in hand in terms of the AIDS epidemic. And not just with iv drug use. Ne 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 156 With many Asians it is not iv drug use. It is the primary problem in the community. But substance abuse as a whole is very large as a problem. I would like to mention something briefly about some of our clinics in Fresno. There is a large Hmong population. And in Fresno we probably have the largest group of opiate addicted Hmong in treatment in the United States. And what our clinic directors found there was that they would try to treat the Hmong that would seek treatment. And the Hmong would say -- populations in general -- but might say -- yes, yes, yes. And in fact not understand anything about, in this case, substance abuse. They also discuss AIDS issues too. And eventually decided to hire a Hmong at both of the clinics. And when you look at -- I know the model is working towards trying to consolidate some of the monies and the resources. But in areas where there is significant Asian populations those significant populations need to have the representation integrated into the services because they are not integrated into the mainstream society or powerful enough in terms of dealing with their cultural issues to present the issues themselves. And we need to affect those populations too. Thank you. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 DR. OSBORN: Thanks very much. After Vinne Sales Rafael Chang from the Shanti Project. MR. SALES: Good afternoon to everyone. My name is Vinne Sales. And I am the program associate at Asian AIDS Project. And I also do health education and prevention in the gay bisexual community here in San Francisco. I would like to emphasize to the Commission that the voices that you hear today are the more articulate voices in our community. The people that we serve in our community have probably far less education and far less privilege than those who are here today. I would also like to emphasize that the trend in funding nowadays is moving towards more early intervention and case management direct services. And I would like to tell the Commission that the Asian community is lagging behind in terms of education and prevention. And services geared towards these education and prevention don't have to be undercut because funding is moving towards case management and direct services. We have performed KABB studies ~-- knowledge, attitudes, beliefs and behavior studies ~- in our communities. And the information is out there. However, behavior is not necessarily being changed. And unless that funding continues for education 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 158 and prevention behavior that necessitates taking care of ourselves and preventing ourselves from being infected by HIV won't be necessarily implemented. Thank you. DR. OSBORN: Thank you. Rafael Chang. And then Michael Foo. I have more trouble reading than pronouncing I think. Welcome. MR. CHANG: My name is Rafael Chang. I am an Asian gay man. And I work for Shanti Project -- which you may or may not be aware of. We do emotional and practical support services to the gay white male community. That is my main clientele. I also service some people of color communities. These people of color communities come from not wanting to access their own community based agency -- if there are any in the first place -- because they don't want to be stigmatized by their communities. I wanted -- given the wonderful testimony that was given today, if you look around this room this is about 50 percent of the direct service workers that you see in this country. This is it. Okay. And I also didn't want you to leave -- or any of us here -- without remembering four people within the last two months that I have worked with. And I will use pseudonyms. There was Michael who was 22 years old. I 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 159 first met him two months ago. And he was from Thailand in the intensive care unit. He died three days later of AIDS. There was Dave who I also met the same day who is Filipino. With lesions and both his legs so swollen that he couldn't walk anymore. There is Johnny who is from Singapore whose lover just died recently. His visa ran out this January and is now facing deportation. And he also does not know his HIV status. And last Wednesday Tim Wong died, Chinese, 28 years old. Of AIDS. DR. OSBORN: Thank you, Mr. Chang. Michael Foo. And then after that Fred Guisande. MR. FOO: I thank you, Commissioners. My name is Michael Foo. I am the project coordinator for Gappa Community HIV Project. I am 46 years old, American born Chinese. I grew up in Hawaii. I am gay. And I am also HIV positive. I share this with you because I would like to talk about some myths that I have come across here in San Francisco about gays in the Asian Pacific Islander community and how AIDS impacts us. I suspect these myths may exist in other parts of the country. Myth No. 1 is that homosexuality is 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 160 not part of the Asian culture. Well, I grew up with mostly Asian friends and schoolmates. I had no role models. I grew up in the '50s and '60s before the Stonewall revolution. I did not know what gay was. But I just knew that I was attracted to men. The second myth I would like to talk about is that Asian Pacific Islander immigrants -- particularly recent immigrants -- do not engage in an unsafe sex behavior. For example, they do not engage in anal intercourse. They learn it from their exposure to white Americans here in the United States. Well, I did not learn to have anal intercourse from white Americans. I learned it with my cousins who were my age at the age of 11. We taught each other. The final myth I would like to talk about is that Asians and Pacific Islander gay and bisexual men if they would only keep to themselves would not be at risk of AIDS. It is only those who relate with whites or African Americans or Latinos who are at risk of contracting AIDS. This may have been true very early in the epidemic but it certainly isn't true now. There is sufficient cases and exposure among Asian Pacific Islanders that we are quite capable of transmitting it 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 161 among ourselves. The last thing that I would like to do is to address Commissioner Goldman's question about when does cultural sensitivity become racism or sexism. First I would like to talk about the issue of sexism. AS a gay man it does not matter to me whether my doctor is a man or a woman as long as he or she is sensitive to my needs as a gay man. Regarding racism, service providers have the responsibility to deliver services to their clients in a manner such that the clients understand what is happening to them and can also communicate to the service provider what their needs and concerns are. Therefore, when you have someone who is foreign speaking the most appropriate way to address and serve that particular client is to speak in the language that they grew up thinking in. Not just speaking in, but thinking in. The other alternative is if the client is bilingual and the service provider only speaks English, then that service provider has a responsibility to use English that is common to the level of English that that client is capable of. So, I don't see racism as being a threat when we ask for cultural sensitivity. Thank you. DR. OSBORN: Thanks for your comments. Fred on 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 162 Guisande. And then Mr. Ed Lee. MR. GUISANDE: Commissioners, everybody, good afternoon. I know we are all pretty tired. I am. I am 34 years old. I am also HIV. I am not a health care worker. This afternoon we have heard from all sorts of health workers, grant writers, everybody pulling money to work within this industry. I just want everybody to get sort of grounded on the fact that this is affecting lives. It is affecting my life. It is affecting many lives in here which we all have been touched by. I deal with my health care issues by going to Washington, D. C.. I1 am the only Asian person ina study that I know of. I have always wondered and asked my white doctors and white nurses and health care people back there why isn't it that NIH is doing anything for HIV infected Asians. And they always told me -- well, this is information that we can't give out -- blah, blah, blah. And that my big question is -- why isn't there any Asians here. I am still asking that question. I have been going there for 2-1/2 years. The way I address the health care industry is that I have to jump through hoops. If I want your AZT, I have to take your AZT. If I can't afford it, I have to join -- I have 10 11 12 13 14 15 16 17 18 19 20 21 | 22 23 24 25 163 to get involved in some sort of group -- controlled group to get my medicine. I can bring up a lot of issues. And I only have two minutes to do so. I am really dissatisfied. I am dissatisfied with the outreach that Westernized medicine is doing towards Asian men, Asian women. I am really dissatisfied with NIH. I wish you guys would lean heavy on them and do something about it. I would like to talk with one of you maybe during lunch and get to know you or you can get to know me as a person. Not to theorize or what to say or what to think to do in the future. Thank you. DR. OSBORN: Thank you. Mr. Lee. MR. LEE: Dr. Osborn, members of the Commission and panelists and service providers, my name is Edwin Lee. And I am the director of the Human Rights Commission for the City and County of San Francisco. And I wanted to extend my welcome here of this very, very important topic and certainly to join with this Commission to do all we can to fight discrimination as well. We have heard a lot today about the lack of funding and the lack of support to break the barriers of ignorance. And most oftentimes those barriers of ignorance translate themselves very vividly into very 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 164 horrible acts of discrimination in employment and housing. And we are doing all we can at this local level in bringing our expertise to fight discrimination as well as sharing that expertise throughout the counties in the Bay Area. So, I wanted to just quickly thank you for being here and welcome to San Francisco. And working with you and all of us -- we will enjoy doing that closely in the next few years. DR. OSBORN: Thank you. That is a nice ending and a nice opportunity for me to thank those of you not only from San Francisco but from a great many places both now and bicultural background for sharing with us. I do believe the Commission has learned a lot. And I think we were very inspired by the leadership that many of you are clearly giving to your communities in difficult times. I think I speak without having to check with the Commissioners. I can assume their feeling is as strong as mine that if we were able to enhance funding for the important programs you have described, if there were any way to do that, we would. And we will if we can find ways to argue effectively. Because it is quite clear that there is a great deal of human need and a good deal of precious life 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 involved in the issues that we all care about. With that, I am going to adjourn now. The Commissioners are going to have to have a working lunch. So, I am sorry we can't take you up on your good invitation. But we have some more work that we have to do. But thanks to all of you for coming. (Whereupon, at 1:15 p.m., the hearing was recessed, to reconvene at 2:30 p.m., this same day.) 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 166 —_— sw eee —_——_—_— oe 2:30 PM DR. OSBORN: I think we are as here as we are going to be. We have commission business. Is everybody set to consider some commission business things for a little bit here? Maureen, shall I turn the floor over to you for that? COMMISSION BUSINESS MS. BYRNES: Thank you. I have a couple of things on a list that I thought I would basically provide a status report on, and then see if there are any issues that you have for us that we need to be taking care of prior to | the June meeting. The first is, for those of you who may not have heard, our consultant on the Chapter IV, Responsibilities of the Different Levels of Government, has received the wonderful honor of being named the new Health Commissioner for the State of California. So, while Molly has promised us that she will complete the chapter that we were counting on her to work on with us, she will not be working with us for the rest of the summer. But I know that both Dr. Konigsberg and Diane and Mike and Jim Allen, we have figured a way in which we can provide some contact and feedback to Molly's latest 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 outline and she will be getting a final draft to us by the end of the month. And it is my expectation that she will also be with us on June 6 in Colorado. That may well be the last time we get to spend a whole lot of time with Dr. Coy. But I feel certainly quite comfortable with the fact that she will fulfill our expectations in terms of the chapter, provide us some guidance and will be available on the 6th of June to chat with us about how that chapter fits into the overall context of the comprehensive report. We are moving along fairly well, I think, on the rest of the report. The consultants know that we have a deadline of May 31 for the next draft of the chapters so that we can send those out to you so that you can have had a chance to read them before the 6th of June. it is my understanding that the meeting that Pat Franks had with a small group of commissioners who were interested in the prevention section went quite well earlier this week. And we will be working between now and probably the next couple of days to get invitations out to some of the individuals identified in that meeting to participate in what we call a staff briefing on issues around prevention on May 30 in Washington, D. C. It is my expectation that there are a number 10 11 12 13 14 15 16 7 18 19 20 21 22 23 24 25 168 of commissioners who are planning on attending. And you are all more than welcome to do that -- it is May 30 in Washington on issues of prevention -—- in addition to any of the members who have identified prevention as being a review No. 1 priority for you all. We will keep you up to date on who the participants for that meeting will be. We also still have planned a meeting tomorrow morning here at the hotel from 9 until 12 with Jeff Striker and some members of the research and general San Francisco community about research and clinical trial concerns. Any of you who will be here for the weekend and want to join us, we will be in the Tower Room, I think -—— I am not sure 1f that is right. Is it the Tower Room? All right, the Tower Room from 9 to 12 tomorrow -~- DR. OSBORN: I think it is Lombard. MS. BYRNES: Is it Lombard? I think it got changed. That is why I sort of hesitated. It is Lombard, not the Tower Room. DR. OSBORN: They must be close to each other on the 6th floor in Building 3. But it is the Lombard Room which is the one I have written down. MS. BYRNES: And because we changed the room back and forth a few times, I did ask Frank to be sure the concierge desk knew where the National Commission on AIDS 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 research meeting is tomorrow morning. So, for anybody who wants to come, or if you know of anyone else who is going to be joining us, just make sure they double-check with the concierge desk. We will leave where we are with the desk so that they know about that. It is still my hope, and maybe it is still Ellen's and my hope, that we will get a draft of a substance use HIV report to you. We have had some scheduling problems with Don DesJarlais and are anxious to get some feedback to him prior to sending a draft out to you. I think again that might be something we will need to talk about at the June meeting to see where we are in terms of your opportunity to have read a draft and see what the timing would look like to releasing such a report prior to the comprehensive report at the end of the summer. I had checked with a few schedules and, sort of in my usual fashion, tossed a few dates out in one of the more recent letters to see if we could find a couple of dates to schedule an additional meeting in July at the request of some of the commissioners at the last meeting, in addition to trying to pinpoint a day that we would release the comprehensive report, and schedule a meeting for September. 10 11 12 13 14 15 16 17 19 20 21 22 23 24 25 170 I did get feedback telling me from a number of people that that second date in July, which I think was like the 30th or the 3ist, would not work for a few people. And also that a couple of commissioners were going to have some problems with the September 4 date as the day that we release the comprehensive report. And I guess at this point I would like to look to you for some guidance as to how you would like for us to proceed. Should be continue to look for an additional meeting date in July? And how best should be go about trying to find a day where I know many people who are involved in academic calendars, as well as Eunice has identified a fairly large-scale conference that would conflict with the 4th of September, how we might be able to come up with a day that maximizes commission participation obviously for the release of our most comprehensive report. But I am beginning to feel like I am not sure how from D. C. to orchestrate getting a date that we can all be in D. C. to release the report. MS. DIAZ: Could you just refresh our memories about the need for the meeting in July? What was that to accomplish? MS. BYRNES: A couple of commissioners at the last meeting thought that the July iOth and 11th meeting, 10 14 12 13 14 15 16 17 18 19 20 21 22 23 24 25 which is dedicated to basically looking at a final draft if you will of the comprehensive report, didn't provide an opportunity for everyone to see together another final draft if there are comments at that point in time. We will be coming together for two days to have read the report, to give feedback to the consultants, feedback to the staff. And then the desire to be able toa see then what the final product looks like prior to going to the printer. And I think it was Diane and some others who suggested it might be a good idea for us to have another meeting to essentially sign off on the final product. That is how that came about, Eunice. MR. GOLDMAN: I think there was also a concern that, even if we were able to finalize satisfactorily the report on July 9th and 10th, there was the question of executive summary and when that was going to be done and ready, and it might not be done until after we decided on —- it is hard to do a summary until after you do a report. If we agreed upon the report on the 9th and 10th, then the executive summary might follow it. And that might be an opportunity to review that. MS. MASON: Could you speak a little louder? MR. GOLDMAN: I am sorry. If we finish the 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 172 report, assuming that we finish the report and there is no further need for review of it on July 9th and 10th, there is still the question of the executive summary that accompanies it. And that might be appropriate for review at that later time. MS. DIAZ: Don, 9 or 10, or 10 or 11? MR. GOLDMAN: Well, whatever the dates are. I am sorry, I —- MS. BYRNES: All right, it is 10 and il. MS. DIAZ: Thank you. MR. GOLDMAN: Up to now it is 10 and 11. And I am sorry, I didn't make that clear. But that was the other thought, just to have extra time in case there were substantial revisions on the 10th and 11th to the report, that there would be time to have those revisions made and then to review the final product as it looked at that point. DR. OSBORN: Larry? MR. KESSLER: I am going to say this in the hopes that it is not misinterpreted but it probably will be. I am uncomfortable talking about a September date for the issuance of the report without a broader discussion or something about a plan for the report. Because it may not be that we need all the commissioners for the issuance but we may need 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 173 commissioners for other pieces of the plan. And by setting a date now it seems to have become the conclusion that there will be some sort of a press conference and the report will be issued that day. And my fear is, the way things have been going in this country, if we pick the wrong day and something else happens, the president has a palpitation or Dan Quayle trips coming down the plane. we will get what we have got wiped off the front page and we won't get a second date. Se, I guess I would like to have a discussion at some point, maybe when Tom has an outline or is ready to lead us in that discussion, at a point where we can talk about the whole strategy. And then see who is available for what pieces of the strategy, and so on. But simply saying September 4th makes me uncomfortable. Because we can't predict what else will happen September 4th. MS. BYRNES: I had asked Tom to prepare essentially a proposal for the plan around issuing the report for our June meeting in Colorado. But what you say makes a lot of sense to me, Larry. MR. DALTON: It makes sense to me, too. I also wanted to suggest that, in addition to thinking about a press strategy. we also ought to think about a strategy 10 17 {2 13 14 | 15 16 17 18 19 20 21 22 23 24 25 174 for how it is that we want this report to be used by Congress and the White House and whether there are steps we should take to make that happen. So, it may not just be Tom. Maureen, you of all people it seems to me have a fair amount of expertise in thinking about what we might do upon release of the report to make sure that the right committees know about it in advance, that people are available to talk to them if that it is appropriate. But some mechanism to —- MR. BRANDT: Yes, the strategy we are talking about is a strategy that is much beyond just press. Because it does engage the Hill, it engages the communities we have been involved with in developing the report, it involves perhaps the White House, and so there are a lot of pieces ot it. And Larry's point is well-taken, that there are a lot of pieces that will need to fit together beyond the press conference itself. And there is as much art as there is science sometimes in timing those things because you can be bushwhacked by events beyond your control. You can plan a certain amount using your best guidance as to what you can anticipate occurring in the news cycle that day. But you can always get surprised by a trip on the helicopter steps. DR. KONIGSBERG: I would like to support both 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 175 Larry and Harlan in the comments that they made. Somebody has used -— it may have been Larry -- the marketing strategy. And I really would like to reinforce that this is more than a press strategy. MS. MASON: I am sorry, I can't hear you. DR. KONIGSBERG: I think this is more than a press strategy. I really would like us to give some thought, I don't know when we do that, to a serious political strategy. And that is a broad base, that is not just Congress. I think there are other ways, but that is certainly part of it, As to how we want to get our messages that will be in that report to where they will be effective. Something different than the President's report which was fine but basically has stayed on shelves of state health officers and other various characters. It hasn't really been used actively. And I think we would all walk away from this commission feeling like we had failed if we don't carry forward the messages that we will have. And I think we really need to give some thought to that. The press conferences, we do that. We will have to do that. But there is that risk that we will get upstaged by various things. MS. BYRNES: I think what I would like to 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 176 suggest and also ask for your feedback on this. we have not talked about this on a staff level. So, anybody who wants to go crazy when you hear me say this, feel free. Our schedule is fairly full, even though it is three days in Colorado. We are looking at issues around Women in the HIV Epidemic, one day devoted to really talking with the consultants about the substance of the report and how it is organized, and then some issues around civil rights. with the understanding that we are ending on a Friday and that most people in terms of flights usually need to be getting away by around 2 or 2:30 on a Friday afternoon to go back to where we all come from. I might suggest that if we have this discussion around strategy that we try to organize something over dinner the first night or something like that. Because I am not clear about where the time that really devoted to this kind of discussion might be right now. If that is comfortable -- right, we will have to look for a night that would work. MR. KESSLER: What is going on the first night? MS. BYRNES: There may be a reception from the Governor of the State of Colorado the first evening. And we, as a staff, are going to be meeting with the 10 11 12 | 13 14 15 16 17 18 19 20 21 22 23 24 25 177 consultants the second night. We need to go back and look at this in terms of time. My point is, I want to provide enough time for us to have this conversation, yet we already have a number of things on our plate. MR. KESSLER: Maybe what would work is, since people are coming from the east, mostly I think from the east to the west including the staff, leaving the east coast at 8 or 9 or even 10 that morning gets you into Denver by noon to 1 o'clock. And if we could meet from say 3 to 5 that afternoon before the reception, and also come —— MR. ALLEN: Larry, is that the 4th? You are talking about traveling on the 4th? MR. KESSLER: Whatever that date is. I am not sure, what is the date? MS. BYRNES: The hearing is on the 5th. MR. KESSLER: You are going to be traveling on the 4th anyway. DR. OSBORN: I am booked solid until the last flight. I certainly can't. JI will be right in the middle of my budget hearings for the school of public health and I can't do it. I am already out three days that week and I can't be gone. MR. GOLDMAN: The other option is to put it 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 178 on for the 7th. MR. KEGSLER: I can't do that. DR. OSBORN: Yes. MS. BYRNES: Is there a possibility it could be the second night? I think we need to go -- I guess to some degree I just wanted to share with you that we really have a lot to do in June. I think as a staff we can go back and try to find out how to present that to you in terms of time for the discussion. Your agenda may look quite full when we send it to you for June for that reason. As I said. we were going to get together with the consultants the evening of the second night to pull together much of what we heard with them during the day. We'd need to do a littie rescheduling. DR. KONIGSBERG: Well, you know, Maureen, I guess I am feeling a certain amount of frustration here which we have talked about before in that we are moving ahead with a three-day set of hearings. We have got a third year when we could have taken up some of these issues and now we can't find the time to figure out what the hell we are going to do the third year. I don't know the way out of the dilemma right now. Canceling the hearings is obviously not the way to do it. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 179 But I guess I will have to say that that frustrates me if we are going to be together three days and maybe the best we can do is find a cocktail hour some way which is not necessarily -—- you know, talk about trying to hear each others’ talking, it is hard at dinner tables. That is fine for a group of three, four, five, six people but not all of us with staff. And I don't know what we are going to do about it. But we will be into the third year before we have figured out what to do. But it seems to me that that marketing strategy is the most important thing. Maybe we could have dealt with that this afternoon. MS. DIAZ: Is there a possibility that if the meeting ends early that those that are interested stay from 2to5 and -- DR. KONIGSBERG: That never works. MS. DIAZ: That never works? DR. KONIGSBERG: And in three days, I — I mean, I can't even find the time to go into the mountains which I dearly love. I have got to go home. (Discussion off the record.) DR. OSBORN: The reason I spoke up was in part because I am sure I am not the only person for whom being out of the office three days is already very adifficult. I was just using my example. No, JI don't mind 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 180 if you go ahead without me. But on the other hand, I think it is a little hard for me not to hear the discussion since, whether I like it or not, I am probably one of the executors of what you come up with. And it is a little easier if I have heard that because otherwise I could misrepresent the commission inadvertently. So, I don't think it is a particularly good idea. But the bigger reason I spoke up is that I think, as I say to our audiences all the time, we have full-time jobs. My three biggest departments at the school of public health are going through budget review. And 36 hours before that the three-day session starts. And I think that others are probably in a similar kind of time constraint. DR. KONIGSBERG: The 4th is not a good day. MS. SOSA: What don't we do the commission business before we do the report with all the consultants? Because that is the entire day for the consultants. MS. BYRNES: Could you use the microphone? MS. SOSA: I am sorry. What about —— there is three days. The first day is women. The second entire day is to discuss the report. What if we started early over breakfast and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 181 took a hour and a half to have this discussion? We did it in Washington, the whole day for the report, but took two hours for business first. I sort of checked with Karen who thought we could do that. Does that make sense? We would have all day, the 6th, to discuss the report but we would start early, 8 o'clock, and do 8 to 10 this discussion? MS. BYRNES: All right. MR. KESSLER: I think it can be done in two hours because people can even prior to then if they have some ideas feed them to Tom so that they can be on flip charts or whatever. Rather than start the brainstorming then, we should conclude it then by people coming prepared. MR. BRANDT: We can prepare some outline material for a step-off for the discussion. And then we can sort of modify it, fill in, adjust, rearrange, you know. But we will hopefully come to a fair amount of closure at that point, starting with the input that we are developing right now and getting from you in the next couple of weeks. MS. SOSA: That is one thing I would encourage. We in external affairs are working on that strategy. And if you will encourage the commissioners to call us if it is possible. Some of you already have. So, 10 11 12 13 14 15 16 17 18 19 20 21) 22 23 24 25 yes, we have got a lot of what you are saying already. We have discussed that. DR. OSBORN: Don, you have been wanting to say something? MR. GOLDMAN: Yes, I just wanted to say, First of all, I think the extent to which the two hours will be productive and sufficient time will depend upon the extent to which we get input to Tom prior thereto and the extent to which Tom and the rest of the staff can present us with a complete as possible set of recommendations. And it may be something that we can take a half hour to and say, gee, it looks terrific and it is fine, and let's go on with it. The other point I want to make is -- and this goes to the September meeting -—-— while I agree with everything that Larry and Harlan and Charles said about wanting to put together a plan before setting up a date, the fact of the matter is that setting up dates for members of this commission is an extraordinarily difficult task. The further advance in time that we do so the more likely it is that people will have been able to accommodate their schedules accordingly. And I don't think that -- obviously, June is the chair and David is the vice chair and Maureen is the executive director. They are I suppose the essential people who have to be there, and Tom, 10 11 12 13 | 14 15 16 17 18 19 20 21 22 23 24 25 183 in terms of a press conference. But the fact of the matter is, I would hate to have a situation where we finally put together a strategy in June, agree upon it. and then try to find a date in September and find that certain commissioners are not available. And then have them feel that in some way or another they are being left out of the process. And I think it is important that if you want to be flexible, then you have to understand that to the extent that you already fill up your busy schedule, then you ought not to be in a position to complain later on that you weren't given enough notice to rearrange your schedule to be available. You can't have it both ways. MS. DIAZ: Could I just say something? I think that probably that particular meeting will be one of the most important to try to get as many commission members to participate. And some of us took your letter very seriously, Maureen, and answered immediately indicating if we had conflicts with those days. I think even before we leave here, most of us know our September schedule. We could redo that again for you and perhaps, as someone suggested, there is some key individuals that have to be there. But the rest of you, you could see. I 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 184 don't think we have recently done a summer schedule for you. We did at the beginning of the year. But most of us don't have appointments through September at the beginning of the year. Would that be beneficial if we left that in your hands or the hands of staff today? MS. BYRNES: Sure, Eunice. I think again that we should go back and figure out away. If that would be helpful for us to have a better sense of what people's availabilities are ——- MS. DIAZ: Yes, that is all. MS. BYRNES: -~ for the month of September. And then as we are putting the strategy together, we have a sense of who is available when. I would also say, bring your calendars. As we put the strategy together, we should probably also be talking about who is available for what, who wants to have more participation in which part of the strategy. But we can go back and figure a process by which we find out if there are a few days in the month of September. And I mean a few, because it may mean that there is more than one day that we are talking about. MS. DIAZ: If we left that with you today, would that be helpful? MS. BYRNES: That would be great. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 185 Three other issues of business for me. One, I also wanted to remind everyone that June and Harlan and again, any members of the staff and commission that want to join us will be meeting with Norm Nickens and other members of the N-MAC staff and board at 5 o'clock this afternoon in the Sutter Room, which is in Tower 3. And check with me and I can let you know how to get there. But, of course, everyone is welcome to join us. And then I wanted to mention, and I know a number of commissioners have been in touch with him, but since I had a conversation with him on Sunday I assured him I would send his greetings and express his regret that he wasn't able to be here. But Don Schmidt wanted very, very much to in some way participate in our hearing here in San Francisco. And we have been in fairly constant contact with Don and some people in Don's life. And when I spoke with him on Sunday and he indicated to me that he would not be well enough to travel, I did tell him that I would share his greetings with all of you and let you know how much he wanted to be here. I also spoke with David Rogers this afternoon and, Don, I don't know if you would like to speak to this? And I can then officially let everyone know what David's conversations and thoughts were. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 186 Or if you would like to talk about the immigration issue? MR. GOLDMAN: Yes. MS. BYRNES: I know you had a particular interest in it. And I would be happy to turn the mike over to you. MR. GOLDMAN: Fine. Thank you very much. On immigration, let me -- David is fine. At least when I called him I interrupted his gardening. And I assume that is a -—- MS. BYRNES: He yelled at me, "Just fine." MR. GOLDMAN: He said he is feeling better and all of the other indications were such that he seems to be feeling better. But, essentially. let me -- Jim, you can please fill in -- but as Yogi Bera said, "It is not over until it's over." And our battle with immigration issues that started back in November of 1989 is still not over and we are still ina battle. My understanding is that the Department of Health and Human Services and Lou Sullivan and Assistant secretary Mason have been stalwart supporters of good public health and been good doctors and have been good public health leaders in this battle. And it continues on in an arena of OMB and 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 187 Justice and the White House and all of those other intriguing areas that I don't really fully understand. I have the following. David spoke to Lou Sullivan today and indicated that at least for the present time there doesn't appear to be anything necessary for us as a commission to do right now. Not withstanding that being the case right now, I would like to urge this commission -—- at least, I think 1t exists already but I just want to reaffirm it and unless anybody objects -- in the event that some action is needed. Remember that if there are no requlations effective published by June 1, there are real problems because then theoretically anyone even with infectious tuberculosis could come into this country. And, clearly. from a public health perspective, that would not be an appropriate thing to do. Somebody who is potentially infectious at that level with tuberculosis at least I think the CDC has determined, has got to be barred. Is that correct, Jim? REV. ALLEN: Right. MR. GOLDMAN: And so if there are no regulations, nobody is barred. And that is wrong. So, there is a whole lot of pressure to actually do some regs. And there may be some need to do something. 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 188 And what I would like to hope is that June, on behalf of the commission, could be authorized to do whatever may be necessary in terms of writing letters, telegrams, dancing on the White House lawn, or whatever might be necessary or appropriate to reaffirm the commission's position in this area. And I would assume, unless hearing anything to the contrary from any members, that that authority would be implicit. MR. DALTON: J don't have any problem with that. What I am not understanding -- maybe I missed something -—- what is the problem? What is the stumbling block? I mean, I heard you say that a lot of people were being stalwart. I heard you saying that there are a lot institutional and other reasons why there would be some regs by June 1. Now what is the problem? MR. GOLDMAN: The problem as I understand it is that there are individuals in the Justice Department and perhaps the White House who may not be entirely happy with the medical recommendations coming out of HHS and may be upset about the political and economic ramifications of those medical determinations. MR. DALTON: And so what we are asking June to do is what? 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 189 MR. GOLDMAN: What we are asking June to do is that if it should become necessary and appropriate and if, for example, Lou Sullivan should say, "Help," that June would be authorized to write a letter. If Lou, for example, should say, "A letter from you, June, or the commission to President Bush would be a useful thing to do. Can you get a telegram out within the next two hours," that June would be authorized to do so if that were deemed to be the necessary and appropriate thing to do. DR. KONIGSBERG: Jim, how many tens of thousands of letters have come in on that issue now? MR. ALLEN: There are approximately forty thousand letters signed by forty-eight thousand people. Of the letters from individuals, 91 percent were opposed. The vast majority mentioned HIV or AIDS specifically. About half of them, 45 percent or so, mentioned the health care costs of AIDS in addition to general concerns about communicability. And —— I don't remember the percentage, it was something on the order of 40-45 percent, also objected to taking off the sexually-transmitted diseases and other various things. I think, more importantly, of the organizations that wrote in including medical and professional organizations, legal organizations such as the American Bar 10 11 12 13 14 15 16 17 18 19 20 24 22 23 24 25 190 Association, governmental staté, local health departments -- we got some from ministries of health in other countries -- of the organizations that wrote in, 83 percent were highly supportive of the policy and thought this was the right thing to do. The Canadians, incidentally, are also in the process of revising their regulations and are essentially allowing travel by HIV infected people without restriction and the main block against immigration would be one in terms ef impact on the health care system and costs for the Canadians rather than issues of communicability. DR. KONIGSBERG: Jim, of the 17 percent then of organizations that were not supportive, can you give us some examples of those? MR. ALLEN: Well, the -- yeah, one that I found particularly interesting -- I certainly didn’t review all of them, but there were three state health departments, for example, that objected -- I am sorry, let me take that back. Not state health departments, state medical societies. There was the president of a prestigious hospital affiliated with a major medical center within 50 miles of Washington, D. C., who wrote in quite strongly opposed. We had a few things like that. DR. KONIGSBERG: Well, I bring that up because I guess this is going to make Sullivan's job a lot tougher to 10 11 12 13 14 15 16 17 18 19 20 21 22 23 | 24 25 191 show courage when the White House would be able to waive 30 thousand letters and say, "Hey, the people don't want us to do that." Now, the people in this case we may believe are wrong. But, damn, I am glad I am not facing what Sullivan is on a@ regulation right now. Maybe I will someday. MR. ALLEN: Yes, and that exactly is the -- it is one part of the opposition, certainly from within the administrative structure, that is blocking approval of the regulation. And it is going to probabiy be taken right to the highest levels to resolve, at least the highest levels in terms of people interested in the domestic side of policy issues. MS. BYRNES: Are there any objections to Don's proposal that —- MR. DALTON: The commission has already taken a position in favor of changing the immigration laws. It seems to me what we are doing is simply rearticulating our position. I don't see what the problem —- DR. OSBORN: There wasn't any problem, Harlan. It is just a matter of, we started out long ago with every commissioner in a position to say what that commissioner thought as a member of the commission. But when we make fresh and new statements for Bye &. are? 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 192 the commiggion, I don't like to seem like I'm racing out in front. And I just said to Don and Maureen that I thought this was a good time to double-check, make sure everybody knows where we stand and is comfortable with my speaking on this issue, if and how it is needed. My assessment is it probably isn't needed because we have spoken clearly in the past. However, one of the reasons that I thought we should talk about it now was because we had at least three people in this morning's testimony say please do something. And I wanted us to have had a chance to refresh our memories and reaffirm where the issue stands. So, your confusion is understandable but it is more my sort of trying to double-dot i's and cross t's rather than any new issue. You are quite correct. MR. KESSLER: I would support Harilan's motion that you feel free to do that, with a slight amendment that you not dance on the White House lawn until after the comprehensive report comes in. DR. OSBORN: Thank you, Larry. MR. PERNICK: Why not give her the option to do it? MR. ALLEN: Maureen? MS. BYRNES: Yes. MR. ALLEN: Can I just mention one other thing. 10 14 12 13 14 15 16 17 18 19 20 21 22 23 24 25 193 In terms of giving you an idea where things are going, however, within the government, [I don't know how many of you Wednesday morning saw the big article in the Washington Times. I never really had a reason before to read the Washington Times. Now I definitely have one not to. Mr. Dannemeyer suggested to the Times that they ask the Public Health Service how many people we were sending to Florence. There was a long article in there. We are given our budget and there are a number of people involved from all of the agencies. We had cut back considerably from San Francisco and Montreal, but we still approved travel for 392 people. A major article in the Washington Times on that that has resulted in both Congressional and Office of Management and Budget screams and immediate request for review in my office. One of the reasons that I wasn't here yesterday is that my office right now is pulling together a major package of materials, trying to justify why the people that we have selected to go ought to be able to go. MR. DALTON: How many people? MR. ALLEN: 392. MR. DALTON: But who is "we"? Who is sending 392 people? =. ALLEN: The Public Health Service. 3 DALTON: Public Health Service. 10 11 12 13 14 15 16 17 18 19 20 2) 22 23 24 25 MR. ALLEN: That includes scientists from the HIH and all of the institutes. It includes people from FDA who are responsible for reviewing applications for drugs and vaccines. It includes all of the -— I mean, Jim Kern's shop alone has got 200 people, most of them scientists and professionals. And that doesn't even begin to get into the prevention side of it. Then there are all the Hershel folks. This is an opportunity for people to get together with all of the grantees, to have literally dozens of spin-off meetings, to meet with people without having to travel. I mean, it is a very efficient way of getting an awful lot of business done in a short period of time, regardless of whether the meeting is being held in Boston, San Francisco, Montreal or, in this instance, Florence. DR. KONIGSBERG: What is the cost on that, Jim? MR. ALLEN: The cost for this year will be no more than it was for San Francisco. It will be on the order ef 1.5 million, which is about one-tenth of one percent —— less than one-tenth of one percent of the -- DR. KONIGSBERG: What is the commission planning to spend on staff and commissioners to go to Florence? I guess I am sensitive to the political kinds of things that -- it is so easy to get into trouble. MS. BYRNES: Five staff members have been 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 195 approved to go, including myself. We will be paying partially for some. I think Eunice travels, Scott and Dr. Osborn. I can tell you what the fees are. They are all the government rates of travel and reimbursement. But it is five staff and I believe three commissioners that we would be paying for. Maybe five staff and two commissioners. DR. OSBORN: I wanted to bring up an issue that I think most of you or all of you with Fax machines are already aware of. And that is that I asked Don Goldman if he would be willing to take over in almost a small working-group mode the careful deliberation of the way we should proceed going into our third year. Intuitively, my sense is that we may want to shift gears at least a little bit. We have been very descriptive in some of our activities and in the writing of the comprehensive report have begun to be more deeply analytical. Clearly some balance is always going to be of use. But how that balance is struck and what issues come up is of course a matter of great concern to all of us. And I thought, particularly in view of the problems that we have been having with calendars and with my very genuine wish that whatever we do represent the commission's full enthusiasm, there is no truth to the rumor 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 that I know what we are going to do in the third year. I don't know what we are going to do in the third year. And I probably have less strongly-developed attitudes about that than the vast majority of members of the commission, at least based on comments that some of you have shared with me. 3Oo, I thought it would be a helpful process to have those commissioners who were willing to volunteer work under the leadership other than David and me and try and get a sense of really broad-based creation of that third year agenda. And I am very grateful to Don for being willing to do so. And that having been said, I would turn the process of the floor over to Don. MR. GOLDMAN: Thank you. I would just like to thank Diane and Eunice and Larry and Charles and Scott and Irwin for agreeing to be part of it. I have not heard from Belinda or Don DesJarlais -~- I guess he is in Europe —- or Roy, Dr. Peterson and Jamal. And if they want to, they are certainly welcome in every respect. I have been trying just to relate back to the other area, just in terms of trying to get together five or six people -—- to try to get together with putting together a meeting time. It is extraordinarily difficult getting 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 197 everybody's busy schedule. Doing it with five or six people is tough. Doing it with 15 must be an impossibility. In any event, I have come up with some time when we do intend to meet. When and where it is and those who are members of the committee, I would appreciate it if they could try to keep June 22-23-24, that is a Saturday, Sunday, Monday, aside as best as they could. It seems to be the only dates that are —- DR. KONIGSBERG: When is that again? MR. GOLDMAN: What? DR. KONIGSBERG: When is that again, Don? MR. GOLDMAN: June 22, 23 and 24. Those dates were mentioned in my memo. And I think those are the only dates that. at least to the best of my knowledge, seemed to be reasonable during the month of June. At least one commissioner has indicated the entire month of July is out entirely. And I will try to set something up for that time. In addition to which, I have here -- whether or not for members of the commission who are in fact participating in the commission or not -- my memo. I assume 1 that everybody did get my memo of May 14? MS. MASON: Memo? MR. GOLDMAN: Did you get my memo? MS. MASON: No. 10 14 12 13 14 15 16 17 18 19 20 21 22 23 24 25 MR. GOLDMAN: Okay. MS. MASON: I might have overlooked it. Has it been a while? MR. GOLDMAN: May 14th. MS. MASON: By Fax, right? MR. GOLDMAN: Yes. MS. MASON: I don't have a Fax machine. MR. GOLDMAN: All right, then you probably haven't gotten it yet. which is a good reason why you haven't responded to it. I have one copy. It's my only copy though. MS. BYRNES: I have extra. MR. GOLDMAN: You have extra? Okay. Attached to that I put together, after speaking to some of the people involved, some ideas. And I have a series of nine questions. And I am going to pass this out and would ask that everyone —~ and I am including within that when I say "everyone" —- people who have agreed to serve on the committee as well as those who are not, and including staff as well. I would ask everyone if they would do their best to answer or provide some responses to the nine questions that are here, and I would request that all responses be sent to me on or before May 31st of this year. The idea is that when I get them, I will get them collated and put together so that they will be out again and people will have a chance not only to have sent them in 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 but gotten them and gotten a chance to see everybody else's comments prior to any meeting. DR. KONIGSBERG: Don, before you do that, have you any notion where we are going to spend that weekend? MR. GOLDMAN: None at all. Unless you mean citywise? I hope to be able to work with Maureen and with Frank in order to ascertain an appropriate site. And I have not yet had an opportunity to do so. I have had feedback from Diane who suggested that Patterson, New Jersey, would not be an appropriate site. DR. KONIGSBERG: Amen. MR. GOLDMAN: Nor did she —- are you leaving, Belinda? MS. MASON: What? MR. GOLDMAN: Are you leaving? MS. MASON: No, I'm just going to the john, if it's all right. MR. GOLDMAN: That's all right. And if you would just pass these, start with Dr. Peterson, Frank? And send them back. MR. DALTON: Don, do you have a Fax number you want us to send this back to you on? MR. GOLDMAN: Sure, my Fax number is Area Code 201, 736-7938. If anyone would like to, they are more than happy to send me a disk if it is in Word Perfect format or 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 200 ASCII format. That would make it even easier to collate your comments. Anyway, my hope is that perhaps before -- you have? And how about one for Belinda? I only made a few copies on my own photocopy machine. If you could pass one down there and maybe someone in staff can reproduce it for the rest of the staff. Would that be okay? And my hope is that getting this information together, we may have a conference call even before then. I will try to work that out and get some times and dates and | plan to meet then and see where things go. If anybedy has any questions, thoughts or ideas, we welcome them. That's it. June, I am done. DR. OSBORN: You are done, all right. MS. BYRNES: One last thing. I don't feel like I have got closure on the second July meeting. Should we plan to schedule one? I am not sure how you would like for me to handle this. DR. KONIGSBERG: It was 30 and 31? MR. ALLEN: Maureen, it seems to me that we probably ought to plan to spend the time having a chance together to discuss issues in the final report. I mean, without knowing exactly what the reactions are going to be, having seen final drafts, it seems that the process -- every 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 201 time we do have an opportunity for that clearly reinforces the need for more time like that. So, I would say that it ought to be scheduled if at all possible and it could be canceled if the first meeting goes smoothly and we are all out on time and everyone is happy. MS. BYRNES: I would just like to make a Suggestion. I think -—- MS. DIAZ: We haven't heard a report on where the meeting of the religious task force -- MS. BYRNES: Yes, that was the point. MS. DIAZ: And I am just saying that the date seems to be jelling for the 18th. Is the 19th a possibility Since there is already four or five commissioners that will be there for the other one and they could be in sequence? MR. KESSLER: I would be there on the 18th. MS. DIAZ: Yes. MR. KESSLER: So. I guess the 19th is —- MS. DIAZ: Friday. MR. KESSLER: -- okay for me, I think. MS. DIAZ: Diane will be there on the 18th. I know I will. A number of people will be there for the i8th of July. MS. BYRNES: It sounds like we should schedule July 19th. And if you decide on the 10th and ilth, and we eee re SS eee 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 202 don't need 1t, we will scratch it. MR. ALLEN: July 19th, one day. DR. OSBORN: Well, at the risk of sounding a little bit like a schoolmarm, there is one thing I would like to bring up. I know we won't very often have meetings that are as packed with witnesses as we had these last two days. But any time we have witnesses, I must confess that it gets extremely uncomfortable in the chair when more than one or two commissioners are out of the room at the same time. And I know everybody has got pressures and are busy. But, quite frankly, there were some times today when I was pretty much by myself up here. And people did in fact comment, some of the witnesses. So, I don't think there is anything more that can be done about it except for commissioners to try and be very sensitive to the fact that somebody else is out of the room and defer if they possibly can defer their departure. I think people will readily understand if any one commissioner gets up and leaves. But in these hearings there were several times when I found myself acutely embarrassed for the commission because people were out in greater numbers than were in. And so, as kind of a wistful request for a favor, sitting in the chair under those circumstances is that 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 203 much more difficult and I would appreciate it if people would try to be considerably more sensitive to who else is out so that we don't have this mass exodus impression. I know people are doing important things outside. So, I don't misunderstand in that regard. But on the other hand, I know in this set of hearings it did not help us in the overall atmosphere. MS. BYRNES: Are there any other issues or concerns the commissioners want to raise at this time? (No response.) MS. BYRNES: If not, I would like on the record | to thank all of the staff for the time and effort and work that goes into alli of our activities and hearings, but in particular this one was quite a feat to put together. And I really think it was very, very well done. I think there are always some things we can learn and do a little bit differently the next time, the next time, the next time. But for the time and effort and thoughtfulness that went into putting together yesterday and today and the degree of difficulty planning meetings across the country and really working with communities, many of whom have not worked with the National Commission on AIDS before, and trying to provide lots of different opportunity for different peoples to feel that they have had a chance to share some of their 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 204 experiences and thoughts, I thought we all did quite a nice job. And I wanted to thank you very much. And we are adjourned. (Whereupon, at 4:00 p.m., the San Francisco Hearing of the National Commission on AIDS was adjourned. ) 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 205 CERTIFICATE This is to certify that the attached proceedings before the NATIONAL COMMISSION ON AIDS for the Hearings held May 17, 1991, in San Francisco, California, were held as therein appears, and that this is the original transcript thereof for the files of the Commission. FRANCES L. RHUDY bah Official Reporter