ah MILLER REPORTING CO., INC. $07 C Sereet, N.E Washington, DC 20002 (202) 546-6666 NATIONAL COMMISSION ON ACQUIRED IMMUNE DEFICIENCY SYNDROME CONFERENCE Tuesday, November 27, 1990 8:24 a.m. Gold Room Radisson Normandie Hotel San Juan, Puerto Rico ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 1. CONTENTS | AGENDA ITEM: Opening Remarks June Osborn, M.D., Chairman Greetings Antonia Novello, M.D., U.S. Surgeon General Welcome Jose Soler-Zapata, M.D., Secretary of Health, Puerto Rico Department of Health HIV/AIDS Services in Puerto Rico Dr. Kenneth Castro, Assistant Chief, Epidemiology Branch, Division of HIV/AIDS, Centers for Disease Control, Atlanta, GA; Dr. Johnny Rullan, Executive Director, AIDS Central Office; Dr. Pedro Borras, Director, Department of Health, City of San Juan, and Mr. Luis Maldonado, Person living with AIDS, and Director, Proyecto Corazon, Ponce, Puerto Rico Financing of Care Ms. Laura E. Torres, Acting Director, Health Facilities and Services Administration, Puerto Rico Department of Health; PAGE | 13 16 23 34 41 64 ah MILLER REPORTING CO., INC. 907 C Sueet, NE Washington, DC 20002 (202) 346-6666 6. 7. 8. Dr. Guillermo Otero, Subregional Director, U.S. Public Health Service, Puerto Rico, and 70 Dr. Jaime Rivera-Dueno, Executive Director, Instituto del SIDA de San Juan 78 Availability of Clinical Trials & Experimental Drugs Mr. Jorge Irizarry, Person Living with HIV, and ACT UP Activist, and 96 Dr. Carlos H. Ramirez-Ronda, Associate Chief of Staff for Research and Development, Veteran Affairs Medical Center, San Juan; 105 HIV/AIDS and Substance Abuse The Honorable Isabel Suliveres de Martinez, Secretary, Puerto Rico Department of Anti- Addiction Services; 118 Ms. Lydia Santiago and Henry Bodhwell, Residents, Hogar Crea las Americas, and 127 The Honorable Hector Luis Acevedo, Mayor, City of San Juan 134 Legal and Advocacy Issues Ms. Lydia Platon, Special Assistant, Disability Ombudsman for the Commonwealth of Puerto Rico;146 Ms. Nora Vargas, Sabana AIDS Litigation and Civil Rights Project, San Juan, Puerto Rico; 152 Dr. Raul Villalobos, Executive Director, Correctional Health Program, and 159 Dr. Trina Rivera de Rios, President, Comite de Amigos y Familiares de Confinados, Inc. 163 ah T1S1 MILLER REPORTING CO., INC, 507 C Street, N.E Washington, DC. 20002 (202) $46-6666 PROCEEDINGS CHAIRMAN OSBORN: Good morning. I am Dr. June Osborn, and I am Chairman of the National Commission on AIDS. I am very pleased that you have been able to join us this morning for the first set of important sessions that we will be having here in Puerto Rico over the next two days. I will spend very little time in my introductory comments so that we can proceed to the substantive issues of the day. First of all, let me offer thanks on behalf of the whole Commission for the very diligent work that has been done in order to make this complicated set of arrangements for us and to prepare such a rich agenda for our opportunity | here in Puerto Rico; we very much appreciate that. A couple of details that I do want to cover before we start. First of all, I understand that last week in one or several of the papers, it was stated that there would be a session for public comments today, and that was in error. |The scheduled time for public comments is tomorrow, Wednesday, at 11:45. I hope no one has been misled by that, but we are very glad that you are with us, and tomorrow will be the ah MILLER REPORTING CO., INC. $07 C Sueet, NE. Washington, DC 20002 (202) 546-6666 opportunity for public comment. Unless people have already notified the Commission staff of their wish to speak, they can come at 11:45 tomorrow. The second announcement is that there will be no smoking in this meeting room. If people wish to smoke, they should do so outside the meeting room, and throughout the meeting we will ask that that be the case. A third comment is that as various people who are speaking to us are speaking, we will use a mechanism that we have found is gentle but effective, of putting on a timer so that people are aware of when about one minute is left of the allotted time for speaking. We would like very much to have a chance to ask questions and interact with the people who are talking with us, so we ask the witnesses to keep their comments brief, and the timer is just a way of helping with the sense of time when one is speaking. So I hope you will accept that and understand that that gives us a chance to interact with you. Finally, I must apologize for being monolingual; I am not Spanish-speaking. So I hope you will forgive me for that. I wish I were able to speak Spanish, but the hospital- ity of Puerto Rico has been extended to me many times in the ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C 20002 (202) 346-6666 past anyway even though I don’t speak Spanish. So I hope you will put up with several of us who are unable to express ourselves in Spanish. I’d like now to introduce Dr. Antonia Novello who is, as you know, the U.S. Surgeon General and who has some greetings and opening remarks as well. Dr. Novello? SURGEON GENERAL NOVELLO [Interpreted from Spanish]: Good morning. I would wish to speak in Spanish, but today I will speak in English so that the people who invited me to | speak can hear my comments, which are really important. So I apologize. [In English]: I come here today to welcome you and to offer my support for your fact-finding efforts here in Puerto Rico. Through our discussions over the next two days, I am sure we will find that we share an unrelenting sense of urgency that all persons with HIV and AIDS receive the best and the most compassionate care possible. The HIV/AIDS pandemic is changing, and this second decade is increasingly reflecting AIDS in the world. It is increasingly female, increasingly young and, obviously, increasingly heterosexual, and in the United States especial- ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C 20002 (202) 546-6666 ly and in Puerto Rico, increasingly enmeshed in drug abuse. Women are the caretakers of society, the cement that holds societies and families together. Although AIDS is a worldwide problem affecting men and women, the increasing impact of AIDS on women and their children has an especially great effect on societies, Puerto Rico no different. The public health challenge of the HIV/AIDS pandemic is unprecedented. WHO estimates that 8 to 10 million adults worldwide are now infected with HIV and that at least 3 million of them are women. Millions more women will be vulnerable to infection because of the role in which societies have placed them. Let me make some statistics meaningful to you. In Africa, where AIDS occurs equally among both sexes, one in 40 men and women are estimated to be infected with HIV. In the United States, it is one in 75 men and one in 700 women. According to the WHO, AIDS has become the leading cause of death for women between the ages of 20 and 40 in many major cities of the United States, Europe and Sub- Saharan Africa. Most HIV infections, at least 75 percent worldwide, were acquired through sexual intercourse, primarily heterosexual. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 Over the next several decades, heterosexual transmission will increasingly become the primary means of spreading HIV infection in most industrialized countries, and by the year 2000 the annual number of worldwide AIDS cases among women will begin to equal the cases among men. For this reason all countries will need to develop HIV/AIDS | prevention and control programs and other public health measures that are responsive to the growing problems of the disease among women. More than half a million children have already been infected with HIV by their mothers, and we expect this figure to double during the next two years. We also estimate during the next two years that more than 3 million uninfected children will have been born to HIV infected mothers, and by the year 2000 there will be more than 10 million children orphaned by parents who die of AIDS. Globally, women account for more than 3 percent of the reported adult cases in Australia, more than 5 percent in Canada, 8 percent in the United States, almost 12 percent in Europe, and 52 percent in Uganda. These are startling statistics particularly when you consider that the number of reported AIDS cases may not reflect the actual incidence of ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 346-6666 HIV infection and AIDS. Let me turn to Puerto Rico. As I have indicated, in Puerto Rico, AIDS has been and remains a disease of i.v. drug abuse heterosexuals. Of the 4,956 cases of AIDS in persons 13 and older reported through November 1990, 4,000 or 82 percent are in males, and 878 cases or 18 percent are in females. In Puerto.Rico, can women in their traditional roles as family caregivers and health care providers protect themselves and their children from infection? Let me articulate our real challenge here in Puerto Rico, in the United States, and in the world, to recognize that any effort to eradicate AIDS in families must embrace the key role of women, particularly as equal partners in decisionmaking. But the effect of AIDS on women is not just a matter of numbers. It affects women as individuals, in their multiple roles, and as health care providers and educators as well as mothers and as income providers. In particular we have not begun to estimate the full impact of this epidemic on women to their partners, to their husbands, to their children, to their parents or even extended family members and friends. Ultimately, the burden of this terrible disease ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 10 will fall on women and secondarily it will fall on families. Several factors can severely damage a woman's ability to protect herself from infection if she is infected in order to protect others. These include psychosocial, cultural or legal barriers to some of her decisionmaking, the lack of economic alternatives with the consequent dependence on a man for support, the societal role of women as primary caretakers of children, husbands and parents, and in some cases lower literacy, limited mobility, and limited access to information, not to mention societal attitudes about sexuality. In general, we all know that it is easier for men to protect themselves from the AIDS virus. For women, the protection is much more problematic. Of course, a mutually faithful monogamous relationship is the best, but in the absence of that, prevented infection is going to need the protection of the women, and at this time, we know that for many women this safeguard is denied them because of societal and cultural restraints. Suggesting to a husband or a partner that he use a condom may be a social tabu because it is perceived as an indication of insolence or defiance against the man, or even ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 11 for some men perceived as an indication of a woman’s potential infidelity. This often results in serious problems within the relationship, perhaps even violence against the woman. In cultures where married women are traditionally expected to bear many children, insisting on safer sex or refusing to engage in sexual relations may be impossible because it limits the number of children, which in some societies is the measure of importance in defining manhood and womanhood. It is important that programs that encourage the empowerment of women by developing negotiation and communica- tion skills can be useful but might not always be realistic. In some countries, most women who are at increased risk of HIV infection may not have the power within sexual relation- ships to negotiate a change in the rules. We have to always remember that cultural attitudes have a strong impact on expected general roles. Many women are also economically dependent on their sexual partners and cannot afford to leave them in order to reduce their infec- tion. In those moments economic survival takes precedence over HIV prevention, and that is why it must be remembered that for any effort in AIDS eradication in families to be successful, women will have to be more and more recognized as ah wiLLER REPORTING CO., INC 507 C Saeet, NE. Washington, DC 20002 (202) 546-6666 12 important if not equal partners in the development of policies pertaining to their family health. Only when this is done and realistically attempted will women be in a position to protect themselves, their sons, their daughters and their families from HIV infection. Effective health care must take into consideration a comprehensive family-based community center approach under one roof to be able to deliver the needs of the complete family. And so as your Surgeon General, I wanted to take this message to you. I am very much worried about the situation in Puerto Rico, but I stand with you here today to be able to listen to all the things that will come from your perspective in order to be able to help you in the long run. Thank you very much. [Applause. ] CHAIRMAN OSBORN: Thank you very much, Dr. Novello. And now I am very pleased that Dr. Soler-Zapata can be with us this morning. I am particularly delighted because I think it is one of the first opportunities in the last few weeks that he has taken to join a group of this sort. So we are very grateful that you could take the time to be with us ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC 20002 (202) 546-6666 13 and look forward to your remarks. DR. SOLER-ZAPATA: Good morning, all of you. If you will excuse me, I will speak in Spanish now. (Interpreted from Spanish]: Madam Chairman, honorable members of the Commission, dear friends, I want to start today with welcoming words, thanking you in the name of the people of Puerto Rico. I am very happy to share with you the difficult situation that our people go through in terms of fighting this epidemic that is the concern of the members of this Commission. In this panel, we have participants from the United States, from public health, excellent human beings, excellent Puerto Ricans as the Surgeon General of the United States, and the Secretary of Health of Puerto Rico, and the Assistant Secretary of Health, Dr. Enrique Mendez. The presence of these persons on the Commission will help greatly for the Commission to have a more clear picture of the problems of AIDS in Puerto Rico. There is no doubt that we will participate in these || hearings and will share our opinions indicating what we are doing in Puerto Rico to fight this malady. ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, D.C 20002 (202) 546-6666 14 Dr. Novello and Dr. Mendez will clarify for members of the Commission any matters relating to the problem of AIDS in Puerto Rico. During these greetings and welcome as Secretary of Health of the Commonwealth of Puerto Rico, I have to state with great regret that today we are among the first countries in the world afflicted by this epidemic. However, I am also proud to state that at the same time, when we discovered the first case of AIDS in Puerto Rico in the year 1981, the Department of Health and all the government entities that are involved with the welfare of our people have been working together to fight this terrible disease. The action plan of the Government of Puerto Rico |'for AIDS is perhaps a unique plan among the American nations. I urge you to listen to Dr. Johnny Rullan, who is Director of the Central Office for AIDS in Puerto Rico, who will speak to us on the public health policy for AIDS which has been established by our Governor, the honorable Hernandez Colon. Our statements are limited at this time to express our gratitude, the gratitude of a people that every day investigates new trends to fight this national affliction. ah MILLER REPORTING CO , INC, $07 C Sueet, NE Washington, DC. 20002 (202) 546-6666 15 As a matter of fact, I want to indicate the statute a _ of limitations on necessary funds to expand our struggle against this disease. We realize that we have less funds than other States of the American Nation and possibly in other countries that suffer. I give you the welcome of Puerto Rico, and I wish to share with you in the United States, and clarify any doubts that you may have regarding the different opinions. Thank you very much, and God bless you. (Applause. } DR. SOLER-ZAPATA: Excuse my poor English. CHAIRMAN OSBORN: Thank you very much, Dr. Soler- Zapata. Before we proceed to the first panel, I want to thank Dr. James Mason for being with us, sitting in for Secretary Sullivan, who is represented ex officio on the Commission. Dr. Mason, do you have any brief comment you would like to make? DR. MASON: Thank you, Dr. Osborn. I want to say on behalf of Dr. Louis W. Sullivan, Secretary of Health and Human Services, how delighted we are that the National AIDS Commission has chosen to come to the ah MILLER REPORTING CO., INC. 907 C Sereet, NE Washington, DC 20002 (202) 546-6666 16 Commonwealth of Puerto Rico for this hearing and how pleased I am to be a participant in this process. I am just. glad to be here and look forward to hearing from many people here and visiting various sites so that we can assess as far as possible what the needs are here in this area. CHAIRMAN OSBORN: Thank you. I think we will proceed directly to the first panel, which includes Dr. Kenneth Castro, Dr. Johnny Rullan, Dr. Pedro Borras, and Luis Maldonado. I would ask that the comments in general be limited time as has been planned so that we can interact with you afterwards with questions and discussion. MS. BYRNES: Before we begin, I would like to announce for anyone in the audience who needs translation either in English or Spanish that there are headsets available in the back of the room. Please feel free to help yourselves. DR. CASTRO: Good morning, Dr. Osborn, members of the Commission and guests. As you know, I am Ken Castro, Assistant Chief of the Epidemiology Branch, Division of HIV/AIDS, at the Center for Disease Control in Atlanta, Georgia. ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC 20002 (202) 546-6666 17 Today I come to you with very honestly what I consider to be mixed feelings. While honored by the request to speak in this forum, I am here to describe some disturbing facts about the effects of the HIV and AIDS pandemic on my native island, Puerto Rico. I do want to acknowledge several individuals who were instrumental in the preparation of the materials I am going to present here today: Mary Ellen Fernandez [phonetic], Mitzi Mays [phonetic], Jean Smith [phonetic], Dr. Elsa Vigarino [phonetic] and Dr. John Rullan. During the next few minutes I will focus my presentation on two main areas. First will be a description of the specific epidemiologic features of HIV and AIDS among adolescents and adults in Puerto Rico, in contrast with other areas of the United States. For this part, I have used AIDS surveillance data received at the Centers for Disease Control from Puerto Rico and other areas through October 1990. Other data were obtained from the National HIV Seroprevalence Surveys. The second area to be covered this morning is the description of a recent outbreak investigation to illustrate the problem posed by dual infection with HIV and tuberculosis ah MILLER REPORTING CO., INC, 507 C Street, N.E Washington, DC. 20002 (202) 346-6666 18 in our population. I believe most of the members, if not all, have copies of the materials I am presenting here today. [SLIDES] The first slide shows that there has been a large increase in the number of reported AIDS cases in Puerto Rico since 1988. During the four-year interval between 1983 and 1988, there were 507 reported AIDS cases. In 1988 Puerto Rico reported 1,246 AIDS patients, and in 1989 there were 1,479 cases. Through the end of October, 1,440 new cases have been reported. The remarkable yearly increases beginning in early 1988 are probably due to the revision of the CDC AIDS surveillance case definition in 1987, which allowed AIDS to be diagnosed presumptively, without the requirement for invasive diagnostic procedures. The next slide, among AIDS cases reported from Puerto Rico, I have two pie charts here. The left side shows cases reported from Puerto Rico. You can see that 43.4 percent have met the case definition on the basis of Wasting syndrome, shown as the yellow part of that pie chart. Another 33.8 percent have been diagnosed presumptively, ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 19 excluding the Wasting syndrome, shown in that pie chart in red. And 22.9 percent have a definitive diagnosis, which is the blue part of that chart. In contrast, if you look at the right side of that chart, only 21.7 percent of cases in other areas of the United States were diagnosed as Wasting syndrome or presump- tively, while 78 percent had a definitive diagnosis. During the past year, Puerto Rico had the dubious distinction of being second highest in terms of AIDS incidence rate, with 56.4 cases per 100,000 population. In contrast, the rates were 113.2 per 100,000 in the District of Columbia, 46 in New York State, 32.7 in Florida, and 31.8 in New Jersey. And these, by the way, represent the five areas with highest AIDS rates in the United States. When we look at some of the Metropolitan Statistical Areas, we see that San Juan had approximately 76 AIDS cases per 100,000, ranking fourth highest in AIDS rates among U.S. Metropolitan Statistical Areas with populations exceeding 500,000 persons. The distribution of AIDS cases by age group is not significantly different between Puerto Rico and other U.S. areas. The largest proportion of cases in Puerto Rico and ah MILLER REPORTING CO., INC. 907 C Street, NE Washington, DC 20002 (202) 346-6666 20 elsewhere in the United States occurs in persons aged over 25 years. And here you can see the similarity in the distribu- tion for all age groups. There is a higher proportion of females among adult adolescent AIDS patients from Puerto Rico than in the rest of the United States. Eighty-two percent of cases in Puerto Rico are male, and almost 18 percent are female. In contrast, 90 percent of cases in other U.S. areas are male and almost 10 percent female. This gives a male-to-female ratio of 4.6 compared with 9.5 in the rest of the United States. In 1989, the incidence of AIDS per 100,000 popula- | tion in women was 16.7 percent in Puerto Rico, which is over five times the 2.9 percent seen in the rest of the United States. This difference implies that Puerto Rico will continue to experience a disproportionately large number of pediatric AIDS patients, which currently account for 4 percent of all reported cases. There are, however, significant differences in the distribution of HIV exposure categories between Puerto Rico and other areas in the United States. In Puerto Rico, 58 percent of adult and adolescent AIDS patients were reportedly heterosexual intravenous drug users--this is shown by the ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, D.C. 20002 (202) 546-6666 21 yellow bars--17 percent reported homosexual or bisexual contact, and 9.4 percent reported both risk behaviors. In contrast, over 60 percent of cases from other areas in the United States reported homosexual or bisexual contact; almost 21 percent reported intravenous drug use, and 6.6 percent reported both behaviors. In addition to AIDS surveillance data, various HIV seroprevalence surveys in selected populations have consis- tently demonstrated exceedingly high rates of HIV infection in Puerto Rico. These rates, shown in this map of the United States which includes Puerto Rico, were 5.3 per 1,000 in male civilian applicants for military service from Puerto Rico, the second highest when compared with U.S. areas elsewhere. Due to time limitations, I will not present additional specific rates. However, I will state that other examples of relatively high HIV infection rates have been observed in the following Puerto Rican populations: in female civilian applicants for military service, in persons attending sexually-transmitted disease clinics, in intravenous drug users attending STD clinics as well as drug treatment centers, in females attending women’s health clinics, in Job Corps entrants, and in volunteer blood donors. ah MILLER REPCRTING CO,, INC, $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 22 Now please direct your attention to the next area which I said I was going to cover. Recently colleagues from CDC worked with officials from the Puerto Rico Health Department in investigating an outbreak of tuberculosis transmission in an AIDS unit in a local hospital. From December 1987 through August 1989, approximately 10 percent of patients admitted to the AIDS unit had tuberculosis. Additionally, several health care workers from the units converted their tuberculin skin tests in May of 1989. The investigation suggested that tuberculosis transmission occurred from patient to patient in the unit, and factors contributing to this were as follows: 1) the obscure clinical presentation of tuberculosis in AIDS patients which precluded from adequate isolation precautions, and 2) inadequate ventilation in the unit, which has been seen to happen elsewhere in the United States. This also contributed to tuberculosis transmission both to health care workers an other patients. Finally, this particular outbreak investigation suggested that AIDS patients exposed to infectious TB were at very high risk of developing active |] tuberculosis. This outbreak illustrates the importance of ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, D.C 20002 (202) 546-6666 23 recognizing TB as a health problem in our population and the potential for excess morbidity in those persons dually infected with HIV and tuberculosis. In summary, I have presented information to indicate the severity of the HIV/AIDS epidemic as a public health problem in Puerto Rico and highlighted epidemiologic differences between the AIDS profile in Puerto Rico and elsewhere in the United States. And finally, by the use of this outbreak I have illustrated the importance of tuber- culosis as a health problem in Puerto Rico, especially in the setting of dual HIV and TB infections. I believe that it is imperative that these data be clearly understood and be used as a basis for sound public health policies. Thank you for your attention. (Applause. } CHAIRMAN OSBORN: Thank you very much, Dr. Castro. Dr. Rullan? DR. RULLAN: Commission members, Dr. Soler-Zapata has asked me to distinguish among you Eunice Diaz. Eunice, thank you for all the help you have given us through the years. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 24 Hello. My name is John Rullan. For the last three and a half years I have been working for the Puerto Rico Department of Health as a State epidemiologist. In the last six months my role has expanded, and currently I am the director of five programs: tuberculosis, immunization, sexually-transmitted diseases, general epidemi- ology, and the AIDS Central Office known as OCAS. My responsibility also includes being the Executive Director of the Governor’s Interagency AIDS Commission, a | commission formed in 1986 which includes the heads of six government agencies: Health, Substance Abuse, Corrections, Education, University, and Social Services Departments. On behalf of our Commission, I want to thank you for accepting the invitation to hold formal hearings here in Puerto Rico. We in the Government of Puerto Rico are very much aware that we live in a high HIV prevalence area. We con- tinually strive to understand the complexities of our heavy migration pattern with the urban centers of the Northeastern — United States, the epicenter of the AIDS epidemic. tenes a In April 1988 we conducted an island-wide random general sample population seroprevalence study, using the ah 1 MILLER REPORTING CO., INC. 507 C Sueet, NE Washington; DC 20002 (202) 546-6666 25 Health interview Survey framework of 3,000 households, two per home between the ages 12 to 60. From a response rate of 97 percent and a seropreva- lence of .8 percent, that is, one out of every 125 Puerto Ricans from ages 12 to 60, we projected that around 40,000 individuals were HIV-positive in the island and that at least 80 percent were unaware of their infectious status. Presently in Puerto Rico, four new AIDS cases are diagnosed every day, while three persons die of AIDS-related _ On, compiications each Sey- How many persons have sexual or blood-borne exposure daily and of those, how many get infected, is not known. That has to be quite significant if our pool of unaware HIV-infected, sexually active population infect approximately 120 babies each year. Secretary of Health Dr. Soler-Zapata gave me the AIDS program responsibility in March 1990, and at that time my office was composed of a secretary and a messenger. We built rapidly and now, seven months later, we have 31 persons at the central level and 185 at the regional level, working | exclusively for the AIDS program. } Our office coordinates all prevention activities as A aie eee el EE VT oe ah MILLER REPORTING CO., INC $07 C Street, NE Washington, DC 20002 (202) 546-6666 26 well as all clinical services given to the HIV-infected individual in the public sector, representing approximately 70 percent of the total system, excluding the Municipality of San Juan, which Dr. Borras will talk about shortly. In July 1990 we conducted a needs assessment study among 339 HIV-positive individuals representative of our risk groups to document their medical, psychological and social needs with respect to their condition. The results of the study were incorporated into our Plan of Action, and in « Fem, oo Sn October 1990 we opened seven regional HIV adult and pediatric clinics, using the medical/psychosocial model and with an ed emphasis on early intervention. So far, 2,921 persons have attended the clinics in —. the first two months of operation. fe This commitment to deliver needed services to our affected population puts this morning's demonstration, the ‘Hawaiian luau show, into proper perspective and makes our ‘team proud to serve Puerto Rico. I would like to draw your attention now to pages 8 through 14, please. Basically, what we are proposing in | Puerto Rico is a regional model with testing center in the primary health care setting that connect with our HIV clinics ah MILLEA REPORTING CO., INC. 507 C Street, N E. Washington, DC 20002 (202) 546-6666 27 'that then go back and forth with the hospitals and then to the Alverga Hospice, all connected by the CBO model. That is on page 8 of the document. On page 9, I want to draw your attention to the existing testing centers. As you can see, most regions have enough testing centers--we have 55--except for the regions of Ponce and Arecibo. On page 10,.we have the testing centers that we are going to create in the next three months with a heavy emphasis on Ponce and Arecibo and connecting with the substance abuse programs. On page 11, we have the location of our specialized HIV clinics, one per region, except San Juan, where there are three. Page 12 shows where our public hospitals are located. Page 13 shows where the private Community-Based Organizations exist in Puerto Rico. As you can see, the metropolitan area has four; Fajardo has one; Ponce has two, and the rest of the regions have none. Page 14 shows what is available, what we are working on, and what we will have in the next six months-- ah MILLER REPORTING CO , INC $07 C Street, NE Washington, D.C 20002 (202) 546-6666 28 that is, in the metropolitan area, three hospices, one prevention service and two developmental stage; in Arecibo, three in developmental stage; in Ponce, one developmental, one for prevention, one hospice, Alverga; and in Caguas, two demonstration. I will go back to page 3 now. Our group is composed of nine specialized teams. The health education team, headed by Juan Morales, has 18 members, and it operates a telephone hotline that receives 1,200 calls per month. On a yearly basis, this team organizes 25 training sessions, participates in 170 community activities, and provides 175 education activities for patients and their relatives. It runs an ongoing radio and newspaper prevention campaign, supplemented by a service access campaign. The team is currently developing strategies for direct intervention with high risk behavior groups in conjunction with our prevention team and Community-Based Organizations. The surveillance team, headed by Mel Fernandez, operates an active AIDS surveillance system which covers 59 hospitals, 13 outpatient clinics and 13 private physicians. We estimate the sensitivity at 75 percent. Puerto Rico is part of the CDC family of surveys, ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 29 and we are currently gathering crucial surveillance informa- tion from STD clinics, newborns, sentinel hospitals, women’s clinics, substance abuse clinics, to be incorporated into our program review. The prevention program team, headed by Enrique toe. Nieves, coordinates testing, counseling, referral and partner as 2 notification activities in 55 testing sites island-wide. Approximately 25 outreach activities are performed per year ~ ney: in college campuses, high prevalence areas and unusual sites. « = > This group is coordinating with the Puerto Rico chapter of the National Hemophilia Foundation for the outreach activities of our estimated 152 adult hemophiliacs. Another activity of this group is serving as the Neer connecting bridge between substance abuse and public health eee — clinics, where we recently opened three of the proposed 13 ~ eee additional testing sites. aa a The laboratory team, headed by Miriam Garcia, performs approximately 87,000 ELISAS, 7,000 Western Blots, and 34 newborn filter papers per year. These tests are mostly done at our central lab, which provides all the lab training courses and monitors quality assurance closely. Our CD4 count flow cytometer has been installed and eee o a ah MILLER REPORTING CO., INC. $07 C Sueer, NE Washington, DC 20002 (202) 546-6666 30 will provide free counts to our HIV-positive population. a EL IE ee a The epidemiology team, headed by Jose Paulo Ponte [phonetic], is developing a confidential computerized network with an extensive dataset that includes demographics, excluding name, clinical, laboratory, risk behaviors, and support system needs. This dataset is working in coordination with the Observational Database Project, an international community-based research project that we expect will provide us the capacity-building necessities that clinical trial committees call for. The community coordination team, headed by Joaquin Fernandez, is assisting developing Community-Based Organiza- tions in Ponce, Arecibo, Caguas, and San Juan. It is coordinating the consortia group that will manage HRSA Ryan White Title II moneys coming to CBOs this winter. The external resources team, headed by Nadya Gardana [phonetic], prepares proposals, develops the proposed projects, and operates the administrative components of these projects. Currently, we have HRSA adult demo, HRSA pediatric demo, HRSA home health, CDC prevention and surveillance, and soon the Ryan White Comprehensive Care Bill. The legislative team, headed by Julio Cesar ah TSS2 MILLER REPORTING CO., INC 507 C Street, NE Washington, DC 20002 (202) 546-6666 31 Gallarze [phonetic], is currently formulating legislation to discuss if HIV should be reportable, if it should be anonymous versus confidential, if it should always be voluntary, and how extensively should partner notification be done. This team has put forth a public policy statement that our Commission is reviewing. The team is in the process of ee setting up adequate counseling through our Region II office " to defend Section 504 of thf Americans with Disabilities act. } Se neeee ee The clinical service team, headed by Dr. Anhelas Rodriguez [phonetic}, has 20 staff members in each region. The multidisciplinary group is composed of an infectious disease specialist, a pediatrician, two generalist M.D.s, three nurses, a clinical psychologist, a health educator, a nutritionist, a respiratory therapist, four disease interven- tion specialists, and MPH epidemiologist, a case manager, a social worker, a regional coordinator, a pharmacist, and clerical support. begun pentamidine prophylaxis setup in all seven HIV clinics. Po ==. The regional coordinator has the responsibility of establishing effective linkages between primary care clinics, testing centers, regional HIV clinics, hospitals, shelter ah 32 hospices, CBOs and other government agencies. As regards needs, in the coming months, we need to consolidate the referral system coordination especially between the HIV clinics and the hospitalized care. It isa sad known fact that AIDS patients in Puerto Rico spend too much time in emergency rooms waiting to be admitted. This must change. Another area that needs attention is the OCAS/CBO partnership, especially outside of San Juan. There are too few CBOs currently delivering services on the island, and funding for seed money must be given as soon as the OCAS/CBO relationship has been linked. Currently, we are examining five proposals to be funded in coming weeks, and once funded, OCAS/CBO relation- ships will improve. A critical area that must not be forgotten is the recurrent secure funding source. Commonwealth funding must be increased immediately since we cannot depend on the federal budget. We have just received cuts in CDC prevention | grants, and the CARE Bill does not seem to provide the funding we had anticipated. By not having a Health and Human Services Civil _ ee i MILLER REPORTING CO,, INC, $07 C Street, NE Washington, DC = 20002 (202) 546-6666 ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 33 Rights Office in Puerto Rico, we have been limited to enforce Section 506 of the ADA. Discrimination against AIDS patients in Puerto Rico does occur, yet we cannot call a federal a office in Puerto Rico to investigate such incidents. 2% The substance abuse/public health partnership needs to be strengthened with solid cross-training and combined comprehensive services, as Dr. Novello mentioned earlier. Over 70 percent of all AIDS cases in Puerto Rico come from drug addicts, their partners and their children. I have four recommendations to the National Commission on AIDS. First, Health and Human Resources Region II should open a civil rights office in Puerto Rico as soon as possible. Second, the HIV problem is island-wide. Having MSA San Juan get all the federal money prevents other areas of Puerto Rico from developing solid programs. The Federal Government should consider Puerto Rico one MSA altogether. Third, HRSA provides 77 percent of the federal funds to Puerto Rico, yet no direct technical assistance. On the other hand, CDC provides 23 percent of federal funds, yet direct technical assistance from four public health advisors. HRSA should provide more technical assistance as its funding ah MILLER REPORTING CO., INC. 507 C Surect, NE Washington, DC 20002 (202) 346-6666 34 sources continue to increase. Fourth, CBO models that work in mainland many times are not applicable to Puerto Rico. Mainlanders in decision- making positions should be culturally sensitive to this and help us develop models that will be applicable to our setting. Thank you. [Applause. ] CHAIRMAN OSBORN: Thank you very much, Dr. Rullan, for your very rich testimony. Dr. Borras? DR. BORRAS: Good morning, honorable Dr. Novello, Dr. Osborn. My name is Dr. Pedro A. Borras. I am the City Medical Director of the Capital City of San Juan. The AIDS epidemic has affected the City of San Juan in a dramatic way, and we believe we are only seeing the tip of the iceberg. Yesterday I ordered one of my aides to see what the situation will be in San Juan by 1995, new cases and estimated costs of these new cases. The project was that by 1995, in five years, we will have 902 new cases, and this will cost us = about $92 million. He kept projecting this, and _ by the year 2000, we would have 1,803 new cases, which would give us a — ee ah MILLER REPORTING CO , INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 35 cost of $184 million. He went further to the year 2005, and ON rep ss = we ae eee. we would have 3,606 new cases, with a projected cost of $368 ee million. That is more than the total budget of the City of So as you can see, San Juan has been impacted in a very dramatic way. At present, over 29 percent of all AIDS cases in Puerto Rico have been reported in the City of San Juan. The HIV/AIDS surveillance report from CDC in October 1990, indicated the number of cases per 100,000 population for the San Juan Standard Metropolitan Area--which we did not ask to be made a part of--was 69.3 cases for the period October 1989 and September 1990. San Juan is fourth only to San Francisco, New York City and Ft. Lauderdale. The latest statistical data as of October 3list shows that 2,502 individuals with HIV infection have been reported in San Juan. Of those cases, 981 are actually AIDS cases; 749 are AIDS related cases, and 772 are HIV-positive asymptomatic patients. Of the actual AIDS cases, 54 percent have already died. Seventy-two percent of our cases are related to intravenous drug abuse. The majority of the cases, 74 ah MILLER REPORTING CO., INC. $07 C Street, N E Washington, DC 20002 (202) 546-6666 fe Lee nee 36 percent, are between the ages of 20 and 39 years old--that is three out of every four. Up to this moment, 142 pediatric cases have been reported, of which 42 were actual AIDS patients. Thirty-five of the 42 actual AIDS patients were children of mothers who were i.v. drug abusers or had had sexual relations with an i.v. drug user partner. The City of San Juan allocates one-third of its whole budget--one-third of its whole budget--to the Health Department of the city. We have had to face the AIDS epidemic with our limited resources since the major financial subsidy | for the indigent, Medicaid, has an island-wide annual cap of $79 million. This has restricted substantially the use of AZT, much needed by our AIDS patients. What was the approach of the City of San Juan to this tragic situation? It has been to establish a centralized and comprehensive network of health services. We contracted a private institution composed of private physicians which were not in our service in the City, actually of high quality professional aid to provide through levels of care medical attention at home, ambulatory clinics, and skilled nursing and special inpatient care in the San Juan City Hospital, the medical care necessary for these patients. It is centralized, ah MILLER REPORTING CO., INC 507 C Sureet, NE Washington, DC 20002 (202) 546-6666 ited 37 and we thought that this was the best and most cost-effective system. The San Juan AIDS Institute was contracted in 1987. The services have been provided on a regular basis to patients for the past two and a half years. The system was Ce ee eee in place two and a half years ago. Actually, I have been in my position for a year and a half, so I am exposing to you a system that was not developed by me or by our actual ad- ministration, but by the previous administration, which is in my opinion an excellent health service organization to deal with this terrific problem of AIDS. Through the Institute, a case management strategy coordinates such services as hospitalization, ambulatory clinics, home care and laboratories. We have worked closely for the past one and a half years with Secretary of Health of the Commonwealth, Dr. Soler-Zapata, and we have worked closely with Dr. Johnny Rullan, who are in charge of the rest of the island. So I share with them the burden of taking care of this epidemic. The San Juan AIDS Institute is centered in an ee ambulatory referral center especially remodelled at Rio > Piedras, where AIDS patients from all San Juan diagnostic ee ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 38 centers, nine of them, are referred. We also receive patients from private hospitals and private institutions. A diagnostic and treatment center is a primary health care facility and family medicine center located ina defined sector of the city, generally near the most populated and low-income areas. We have a lot of public housing in San Juan, and these centers were built around the public housing where most of the low-income people of San Juan live. San Juan has nine of these diagnostic and treatment centers. A team of health care professionals, led by a physician, controls each diagnosed patient individually. Each patient has an attending physician who oversees his or her care during the entire course of the illness. This physician is accessible to the patient day and night; patients receive a card with their physician’s telephone and beeper numbers to ensure continuity of care. A patient discusses any problem directly with his or her physician, who decides where and how the patient will receive adequate care. It could be sent from his home or picked up by our emergency services in his home to be taken to the nearest diagnostic center, because they are strategically located around the City, so we have nine options, out of which six options are ah MILLER REPORTING Co., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 39 open all night and weekends. The inpatient care takes place at the San Juan Municipal Hospital. This is a tertiary teaching institution of 415 beds which some of you will visit this afternoon. We have an existing 20-bed semi-private unit for |inpatients. Extended care, hospice care and home care are part of the services regularly offered. Several home care teams consisting of a physician, a nurse, a social worker and a psychologist visit patients at their homes. The attending physician for each AIDS patient makes the decisions on the level of care required in consultation with the specialists working on other sections of the city. The importance of the primary health care system as well as the need for formal preventive and educational activities was established from the beginning, 1987, and a strategy to strengthen them was developed. In March 1989, the San Juan Health Department with financial assistance from the Robert Wood Johnson Foundation developed a community-based, integrated primary care system to prevent, detect and control HIV infection, with emphasis placed on the detection and prevention of sexually-trans- mitted diseases as a major risk factor for HIV infection. ah MILLER REPORTING Co , INC $07 C Sereet, NE Washington, D.C 20002 (202) 546-6666 40 We have decentralized the education and early detection strategies for the prevention of HIV infection and other sexually-transmitted diseases by the development of health teams in all of our primary care facilities. So we have eight options, the diagnostic centers. Our plans for the next three to five years include, among others: the establishment of a new AIDS ambulatory center for the provision of ambulatory services to all our patients, and hopefully medication distribution centers to see if we can provide them with AZT and other drugs; the establishment of an AIDS clinical trial unit. This has already been established in our hospital, and we have already started clinical trials in our hospitals. VICE CHAIRMAN ROGERS: Dr. Borras, let me interrupt you just briefly. To our sorrow, you are at the end of your time. Could you summarize rather briefly for us, because we are anxious to ask you questions as well. DR. BORRAS: Is it already ten minutes? VICE CHAIRMAN ROGERS: Yes. It goes very fast when you are on the stand, I’m afraid. DR. BORRAS: Yes. There are two important things that I would like to add here. The rest, some of you will ah MILLER REPORTING CO., INC. 507 C Surect, N.E. Washington. DC 20002 (202) 346-6666 41 see this afternoon. We are worried about some news that Congress is "skimming"--is the word that has been used--funds from Title I and Ryan White for the City of San Juan. The possibility has been studied of not giving these funds to the City, but giving them to the State. This is the situation in San Juan. We have already too many cases, and the burden of the AIDS cases in San Juan is hard to take care of by our municipality with our limited resources. Secondly, we believe we have the clinical model which is perfect, or nearly perfect, I would say, to deal with this epidemic. This is a clinical model, and we believe that it should be followed. I thank you very much for listening. [Applause. ]} CHAIRMAN OSBORN: Thank you very much. We regret that the time pressures are so great, and we appreciate your forbearance. Mr. Maldonado? MR. MALDONADO: Good morning, everyone. Honorable members of the Commission, honorable Surgeon General, ladies and gentlemen, I come before you today to express my personal ah MILLER REPORTING CO., INC. 507 C Stureet, NE Washington, DC 20002 (202) 546-6666 42 views and share my experiences as well as those of other persons with AIDS in regard to treatment and care in the health care system of Puerto Rico. My feelings personally are ones of gratitude for |the support of a system which, though limited because of the impact of a serious epidemic, has responded to my needs. I know this to be true for many others. The health system on the south part of the island, though resources are limited, has been responding within its capacity to the many demands created by the epidemic. In addition to the public health system, many people have joined our group of volunteers of the pastoral care program in offering emotional and spiritual support as well as donations for medicine. —~AS~ OP er been overwhelmed by the AIDS epidemic. Ever-growing numbers of patients, the needs of many expensive medicines, and the Se, lack of knowledge of the disease on the part of many doctors wees 7 ~ as well as other health care workers with negative attitudes, ——_ aa create very painful situations for patients. “eee, For example, many doctors in the emergency room simply say: "There is nothing we can do because those ah MILLER REPORTING CO., INC. $07 C Screet, N.E Washington, D.C 20002 (202) 546-6666 43 symptoms are part of your illness." These are patients who have difficulty breathing and who have diarrhea. A month ago, a female patient was examined by a doctor for the first time. He told her, without any analysis or test whatever, "Oh, you are surely positive for HIV virus." At that, her mother, standing at her side, fainted and had to be treated as well. Patients in need of emergency care are often reluctant to seek help because of negative experiences with some professionals. This means shortening of many lives. We all know that AIDS is, with the necessary treatment, becoming a chronic disease for many patients who survive many years, with adequate care. The present situation in Puerto Rico shows the island as having such a high incidence of HIV virus that there exists a sense of panic about being infected. This panic in the population is in part the cause of the great amount of rejection among families, friends, and the community of HIV and AIDS patients. Ignorance is evident at all levels of living--among employers, in public transportation, as well as funeral parlors overcharging for burials because they claim to be at risk of infection. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 Fe a a ee ah ee ee Bre ee ee ee 44 I feel it is urgent to bring more forceful education throughout the island to attempt to change the attitudes of panic and rejection suffered by so many patients, to become instead an environment of faith, hope and concern. Recent medical reports of better medical treatments and great programs and centers which have already begun to function, offer holistic care to persons with HIV and AIDS. All of this, as well as the many professionals serving with dedication in these projects, is enough to cause new hope, enthusiasm and energy to the many persons infected and their families. The communities which propagate rejection and coldness ought to stop and really listen to one patient who could tell of his or her daily struggle to survive with much luck. We need a campaign of positive eee of reaching out a helping hand, and eradicating unreasonable fears. The economic situation of patients in Puerto Rico is a serious problem. The extreme prejudice frequently forces HIV-positive persons, otherwise healthy, to leave Nee en one their jobs. Others report they are refused jobs even when nae ea abte to work. Many are from low-income families, or no an income. Right now, Social Services pays $64 a month to ill + ~, NS ee oe ah MILLER REPORTING CO., INC. 507 C Street. N E Washington, DC 20002 (202) 346-6666 45 patients. Man eung to quality for Social Security and resort to looking for means of survival on the street in ee _ __-. er F undesirable ways. Mee __ eee we ae eee Many patients have in their pockets an accumulation of prescriptions they cannot afford to buy. We all know the high cost of medicine patients need, and it is as yet an unresolved problem. Medicines are extremely important for the very life of the AIDS patient. I am working in the City Hospital in Ponce as a volunteer in pastoral care. This hospital, serving 15 rural towns in the south of Puerto Rico, is not easily accessible for people who are ill, timid and fearful of being identified with AIDS or HIV. Therefore, our hospital is often the placed where only the gravely ill appear, seeking help. In our culture, people are poor and proud, preferring to remain silent about their illness, which is felt to be something to be ashamed of and likely to cause them the pain of rejection. In spite of all our problems here, as an AIDS patient and a volunteer in the pastoral program, I am witness to a Puerto Rican spirit, a special trait of our people, a human warmth which is always evident in crisis. this dynamic spirit permeates also the ever-growing efforts of the ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 346-6666 46 | agencies presently dealing with this problem of AIDS. It is obvious in every aspect of the situation. The response of so many professionals who want to receive information, to be educated concerning the infection, and to really help is an inspiration, a real help to me, personally, and to all the patients. This is so evident at the administrative level of the agencies dealing with AIDS as well as locally in Ponce. We have a wonderful rapport with all the Ponce agencies and administration of the hospital, working together, a truly dedicated network of wonderful collaboration, which energizes me. Even without the great physical facilities we will soon have, which are still unfinished, patients now have access to doctors in the clinic who are available daily and who really care about us, receive us with love, concern and support. The potential for what has only begun is tremendous. All the volunteers collaborating with the professionals and other agencies can give testimony to the great heart of compassion of our people. We seek donations for helping in purchase of patient medicines; we ask for beds, sheets, everything to help families care for a patient. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 47 We are overwhelmed with the response of the community. Project Heart is rightly named. We intent to incorporate Proyecto Corazon, the support outreach attempting to reach potential and high-risk persons who are undiagnosed, untreated and possibly spreading infection. Prepared volunteers in high-risk areas are beginning this project of collaboration with government agencies, reaching out in support and in confidentiality with medical, social, psychological and spiritual support. This Project Heart is nothing else but the formal implementation of the profound Puerto Rican spirit of hospitality, caring and love. Like all painful crises which stimulate and move our people to unit, to join hands and hearts, this AIDS problem truly drives us toward one another. We will find, as strange as it may seem, that we are a more united people as we continue in faith to deal positively with what we now know | to be everybody’s problem. We have begun. We join hand with our forces--government agencies, community organizations and volunteer groups--and we will continue with God’s help, more christian than ever before. Thank you. {[Applause. ] ah MILLER REPORTING CoO., INC, $07 C Street, NE Washington, DC 20002 (202) $46-6666 48 CHAIRMAN OSBORN: Thank you very much. Are there questions from the Commission? “Dr. Mason? DR. MASON: I address my question to any member of the panel, and it relates to transmission of AIDS/HIV virus in the Puerto Rican population. A lot was said about i.v. drug abuse. Not much was said except in the Surgeon General’s remarks about heterosex- val transmission. I wonder, Dr. Castro or others, whether you could comment about not only how much heterosexual transmission you feel is going on here, and then what you predict will happen in the future. DR. CASTRO: The number of heterosexual AIDS cases in Puerto Rico, when you consider all adults, adolescents and exclude those who are reported being gay or bisexual, exceeds | 70 percent in contrast with about 24 percent in the United States. So the potential is certainly there for transmission. Furthermore, the fastest-growing group in the | epidemic consists of heterosexual i.v. drug abusers, their partners and their children, which also accounts for about 76 percent of all cases--and as I said, it is growing faster than in other groups. ah MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC. 20002 (202) 546-6666 I think it is also very important not to lose sight of the reality that there is indeed homosexual and bisexual transmission, and I believe that there is a lot of collective ignorance in this area. So while the problem seems to be accentuated in the drug-using population that have described themselves as heterosexuals, there is also a potential that many of these males may have described themselves as drug users rather than being bisexual because of the cultural stigma associated with homosexuality. So that potential also exists there. There is no data to substantiate this. It is sort of the rumor, and is through the grapevine, but as I said before, there is really, unfortunately, no hard data on this subject. DR. RULLAN: I’d like to comment on our inability to really follow the epidemic because we don’t have the proper surveillance system. We are doing AIDS case reporting, which is seven, eight years late and does not let us really see what is happening, although 82-to-18 percent, a 4-to-1 ratio, in Puerto Rico is pretty high compared to the rest of the United States. If you look at our HIV study that we did in 1988, ah MILLER REPORTING CO, INC. 507 C Sueer, NE Washington, DC 20002 (202) 546-6666 50 the ratio was 3-to-1 male-to-female. Sentinel hospital ratio is 2.5-to-1, and recent family survey is down to 1.7-to-l. So it definitely is happening, but we don’t have the sen- sitivity in our surveillance system because HIV is not reportable in Puerto Rico, because HIV is not really what we measure, that we will not be able to see that impact in black and white for many years. CHAIRMAN OSBORN: Harlon Dalton, then Don Goldman, then Eunice Diaz. COMMISSIONER DALTON: I have a brief question for Dr. Castro and then a question for Mr. Maldonado. Dr. Castro, one of your pie charts showed a dramatic difference between Puerto Rico and the Nation, nationally, with respect to the diagnosis of AIDS, whether it waS a presumptive diagnosis based on Wasting syndrome, or a definitive diagnosis. I am wondering what accounted for that dramatic difference, if you know. DR. CASTRO: What exactly accounts for that, I don’t know. It is, however, quite well-established that by virtue of the revision of that case definition in 1987, Puerto Rico was then able to diagnose and report many more cases on this basis. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C 20002 (202) 546-6666 51 I think very often I would speculate many of these patients come from areas outside San Juan where the services are perhaps not as available for the appropriate diagnostic procedures, and therefore they get what I would consider to be the default diagnosis. By not having a bronchoscopy done to diagnose that episode of pneumocystis pneumonia, they get reported by virtue of their weight loss and diarrhea, et cetera, or a presumptive diagnosis of pneumocystis. I think that plays a very important role in that, especially outside the San Juan area. COMMISSIONER DALTON: Thank you. Mr. Maldonado, I was very struck during your testimony by a number of the contrasts, which of course is the world in which you lived. I think the most common term that you used was "rejection", and you very dramatically described the rejection faced oftentimes by people living with AIDS, but you contrasted that with what you described as the Puerto Rican spirit of love and affection. I guess I wanted to know how one particular form of that that you described--I was struck by the difference between the doctor you mentioned in the first part of your testimony who, based upon really no examination, told a woman ah MILLER REPORTING CO., INC. 507 C Street, N.E. Washington, DC 20002 (202) 546-6666 52 in front of her mother that she was infected, and you also talked about doctors in emergency rooms who seemed unwilling to deal with opportunistic infections, saying that is just part of the disease. That was the first part of your testimony. Toward the end, though, you described the situation in the hospital where you volunteer, in which doctors provided quite good care and also very loving care, by your testimony. And I guess I wonder how can you get the second group of doctors to educate the first group of doctors--I mean, how can you bring these two pictures closer together? MR. MALDONADO: I think it has to with that you do have professionals in the system who don’t want any part of it, period; they just don’t want to deal with the disease; they live in a state of panic of being infected. One complaint I have in the hospital that I work with is that there are many conferences and educational programs that the doctors in the hospital are not part of; they are not part of them and are never invited to the many conferences in the area of San Juan. Most of these people, mainly professionals, when they get educated they change their attitudes completely, like many doctors have. You ah MILLER REPORTING CO, INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 53 know, we have many caring doctors who are willing to help once they get educated, once they can be part of education- based conferences. But you still find people who don’t even want to hear about it, they are so afraid, they live in panic. And I am talking about doctors and nurses. I think it is the duty of the government to bring about a program to educate all the professionals on the island. CHAIRMAN OSBORN: Don Goldman, then Eunice Diaz, and then we’ll let Dr. Novello have the last question for this panel. COMMISSIONER GOLDMAN: Thank you. I have two questions, the first a specific one. Dr. Rullan, one of the things that you suggest is that the HHS set up a civil rights office here in Puerto Rico. Are there local antidiscrimination offices in Puerto Rico that prohibit discrimination against persons who have AIDS or are infected with HIV under local Puerto Rican law? DR. RULLAN: If there are, I am not aware of them. COMMISSIONER GOLDMAN: Okay. Is the issue that the office is needed here, or is it the issue that there is an HHS II regional civil rights office in New York, and have ah MILLER REPORTING CO., INC $07 C Street, NE Washington, DC 20002 (202) 546-6666 54 they just not been responsive to complaints that are made-- because I come from New Jersey, and even though obviously it is different being separated from New York by a mere river as opposed to an ocean, sometimes the distance seems as large. And I know how we sometimes feel about the HHS II regional office being in New York, and I am wondering whether the | problem is one of response or whether there is a need for a local office. DR. RULLAN: At the civil rights conference/workshop we had in September, a number of issues came out that a lot of us for the first time started to get educated on. At that = conference it was identified that there were a lot of things era that we could have been doing through the years, especially with Federal fundings. All of our hospitals have Federal fundings, most of our clinics have Federal fundings, all the private hospitals get involved in Medicare. And I think that if we are going to start dealing with the antidiscrimination Swe are goung te clauses that we need, we have to start enforcing it, and we. need to know that this office exists. The people in New York were very helpful, and the people in Washington were very helpful, but they cannot be constantly training us. And I think a lot of people who went to that conference opened ah MILLER REPORTING CO., INC. $07 C Saree, N E. Washington. DC 20002 (202) 546-6666 55 their eyes for the first time. I think if we get an office over here, and we have the workshops at the regional level, and we go to the emergency rooms and notify the administrators | that they are going to lose their funding unless they have certain clauses, that people are not going to understand what the problem is. I think it is basically that we have never been exposed to that type of Section 504. COMMISSIONER GOLDMAN: I have one more question, and any member of the panel can answer it. I have read different numbers throughout the materials in preparation for these sessions, and I was wondering if you might be able to estimate roughly what percentage of those eligible for AZT and PCP, based upon appropriate CDC recommendations, namely, using a 500 CD4 count for AZT and appropriate recommendations for prophylactic PCP, are in fact receiving it in Puerto Rico. Is it 10 percent, 20 percent, 30 percent, 50 percent? DR. RULLAN: Our needs assessment study in July, which was representative by risk groups and had 339 adults answer, the whole island, and our EAS officer was conducting that study. ey We found that in the private sector 39 percent of ah MILLER REPORTING CO., INC. $07 C Sureet, NE Washington, DC 20002 (202) 546-6666 56 the people that we surveyed were receiving AZT-- COMMISSIONER GOLDMAN: Thirty-nine percent of those who were eligible, or should have been receiving it, were receiving it. DR. RULLAN: The problem here, Mr. Goldman, is that the pivot for the whole thing is having a CD4 count. If you don’t have a CD4 count, you cannot evaluate the person. And /the problem was that most persons did not have a CD4 count. = — Of those who we asked, 39 percent in the private sector said my they had a CD4 count and were on AZT, and 14 percent of those in the public sector had a CD4 count and then subsequently were on AZT. That was in July. In September, we increased to ee Cs 1,000 in the public sector. So I estimate that around 20 to Pa ———e 25 percent of people in the public sector are now receiving = [AZT out of which probably 65 percent of the total should be receiving it. Phere were probably 45 percent less than what = we should do, but right now we are spending $200,000 a month on AZT, and that is as much as our budget can give us. COMMISSIONER GOLDMAN: Is that reflective of the health care delivery system in general, or is that reflective of specific problems in HIV infection? For example, would a ah MILLER REPORTING CO., INC. $07 C Street, NE. Washington, DC 20002 (202) 546-6666 57 Similar percentage of those persons who have cancer and who are in need of cancer chemotherapy also be being denied cancer chemotherapy in Puerto Rico, or is it a special problem with AIDS and HIV infection? DR. RULLAN: I think it is a special problem with AIDS and HIV infection because of the fact that it is a new disease; it has taken a while for us to get our infrastructure going, and I think in a year or two, once we can secure our funding, we will have as many people on AZT who are presenta- | tive as we have in cancer chemotherapy. I think it is just that it has been difficult to establish an infrastructure. Hqwever, we do provide everything free in the public sector, so that 70 percent of our population does not pay for any of es Ene Services: In the private sector, people pay, and there have been a lot of physicians who are advertising in the newspaper--anybody HIV-positive, come for pentamidine prophylaxis--and making profits. So we cannot compete with those physicians, but at least we will be providing as we get more funding more people on AZT. The pentamidine, we have just bought for 500 patients the pentamidine prophylaxis, and combined with the Bactrim, we will be able to provide the proper prophylaxis, because we believe that our Pneumocystis ah T2S1 MILLER REPORTING CO., INC. $07 C Sueet, NE. Washington, DC. 20002 (202) 546-6666 58 carinni pneumonia is preventable, and we should not have anybody admitted in Puerto Rico into hospitals because of that. So that is the goal that we are trying to reach, and hopefully in the next few months, once we have all the tuberculosis precautions underway and make sure the extractors are there with negative air pressure, those pentamidine Clinics will begin and will provide services. COMMISSIONER GOLDMAN: Thank you very much. CHAIRMAN OSBORN: Eunice? COMMISSIONER DIAZ: I have two brief questions, one for you, Dr. Rullan, and another one for Dr. Borras. A number of years ago when I first met you, you were describing to us the general-wide Puerto Rico seropreva- lence study that you ably designed with CDC. Could you just tell us if the projections of the numbers at that time in your general seroprevalence Puerto Rico study are still those that you are projecting will be the ultimate impact of this epidemic, or has that changed? I did not hear either of you talk about this, and I think it is such an important piece of information in terms of looking at future projections. DR. RULLAN: First of all, our seroprevalence study was done with 500 of our workers from the health department, ah MILLER REPORTING CO , INC, $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 59 and we conducted it in two weeks all over the island. The seroprevalence study found .8 percent, or one out of 125 individuals, infected in the general population, and I believe that was the first time in the world that a general population study was done. COMMISSIONER DIAZ: What was that number, again? DR. RULLAN: It was .8 percent, or one in 125. Subsequently, we then compared it to military recruit data, and our military recruit data was .6, which was — ay wee Se ee ee oO en — not that different, but it was similar. We then compared it to women and infant/child clinics, and it was one percent in San Juan, which was not a Significant difference. We then compared it with our Red Cross data for people who are donating blood, and because of the clause that high-risk group people should not donate blood, it was lower, but it was .23. Then came the CDC Family of Surveys, and the neonate dataset is around one percent--that is mostly in San Juan. And then the sentinel hospitals, two of them in San Juan which had 2 percent; there were two San Juan areas. ah MILLER REPORTING COo., INC. 507 C Suect, NE Washington, DC. 20002 (202) 546-6666 60 So in our seroprevalence study, San Juan had 1.5 percent prevalence; Ponce had .8; Caguas had 1.3 percent; Mayaguez had little; Arecibo had little, Bayamon had .5, and Fajardo had little. But when you have all these Federal fundings that come, they all go to San Juan, so we have to compare San Juan with San Juan. Our prevalence was 1.5 in 1988; the sentinel hospital, which is 6,000 people, in 1989 was 2 percent. So I think that in San Juan, the prevalence is between 1.5 to 2 percent. I think the rest of the island, the prevalence is around .5 to .6 percent. COMMISSIONER DIAZ: Which translates into how many numbers of HIV-infected people do you project based on that study? DR. RULLAN: We projected in April 1988 that there were 40,000 people who were HIV-positive infected. The 1990 dataset from the sentinel hospitals, which — ? projected 2 percent in San Juan, would mean that there has been an increase of .5 percent, more or less, and I would suspect that right now we must be around 55,000 to 60,000 persons infected. a CHAIRMAN OSBORN: Thank you so much. ah MILLER AEPORTING CO., INC. $07 C Suect, NE. Washingron, D.C 20002 (202) 546-6666 61 Dr. Borras, a real quick question. Should the entire Ryan White Title I moneys not come to San Juan, what would be the impact, on that system of care that you have described now is existing and functioning well or relatively well for a large number of people in permitting greater access and also prevention, education and all the other kinds of services you talked about? DR. BORRAS: I would say that the main impact would be that we would be given no actual state-of-the-art treat- ment. We would be given supportive treatment just like we have been doing up until now, but no AZT, none of the other state-of-the-art. COMMISSIONER DIAZ: And the percent of AIDS- infected population in San Juan is what? DR. BORRAS: The same as Dr. Rullan said; it is growing at that rate. COMMISSIONER DIAZ: What is the percent of the total AIDS caseload that San Juan SMSA has? DR. BORRAS: That would get the treatment? COMMISSIONER DIAZ [Translated from Spanish]: No. What percent of the total AIDS caseload are in the San Juan SMSA? ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 62 DR. BORRAS: We spend on AIDS-- VICE-CHAIRMAN ROGERS: I think Ms. Diaz is asking of the estimated 60,000 HIV-positive in Puerto Rico, how many would live in San Juan. Is that right? COMMISSIONER DIAZ: Yes, that’s correct. DR. BORRAS: Thirty percent. I mentioned that before--29.4 percent. DR. RULLAN: Excuse me. Let me add something. That is San Juan City. There are 24 counties in San Juan SMSA out of which San Juan City is one, and we in the Health Department have the other 23. So of the 24 counties in SMSA San Juan, the City of San Juan has one, and the Commonwealth Health Department has the other 23. CHAIRMAN OSBORN: Dr. Novello has the last ques- tion. SURGEON GENERAL NOVELLO: Just a short question for Ken and for Johnny. It has been said that in some parts of the United States, women between the ages of 15 and 54 have AIDS as the leading cause of death. In Puerto Rico, would you be able to say that women on the island have AIDS as the leading cause ah MILLER REPORTING CO., INC. $07 C Sereet, NE Washington, DC = 20002 (202) $46-6666 63 of death today, or in what projection, and if so, do women know? DR. RULLAN: The data is that yes, it is the al leading cause in women 15 to 44 in Puerto Rico. ee SURGEON GENERAL NOVELLO: And the second question is do women know. DR. RULLAN: My experience has been no. I think the big problem in Puerto Rico--and Dr. Allan Henman [phone- | tic], when he helped us in formulating our plan--was that in our family of surveys, we have identified 1,500 individuals who were HIV-positive. If there are 40,000 or 60,000 Hiv- infected in Puerto Rico, the reality is that 3 or 4 or 5 percent of the people who are infected know; more than 95 percent of the infected people, in my opinion, in Puerto Rico are not aware of their status. That is the killer. SURGEON GENERAL NOVELLO: Thank you. CHAIRMAN OSBORN: Let me thank the panel for very | helpful and useful introductory testimony. It has been very nice to have you give us such a clear introduction to our task, and we appreciate it very much. [Applause. ] CHAIRMAN OSBORN: I would appreciate the next panel MILLER REPORTING CO., INC. $07 C Street, N.E Washington, DC 20002 (202) 346-6666 64 coming forward: Laura Torres, Guillermo Otero, and Jaime Rivera-Dueno. Welcome. While you are getting seated, you probably heard me say before that we are using a little timer here to help us keep our own schedule straight, so I'd appreciate it if you would be brief so we can interact with you afterwards. Thank you. "Ms. Torres? MS. TORRES: Good morning, Dr. Novello, Dr. Osborn and distinguished members of the National Commission on AIDS. My name is Laura Torres. I am the Acting Executive Director of the Operational Branch of the Department of Health, better-known as the Health Facilities and Services Administration of the Commonwealth of Puerto Rico, AFASS. On behalf of the Operational Branch of the Depart- ment of Health, I appreciate the opportunity to participate in this hearing to present the financial impact of providing health care services to HIV and AIDS patients in the public health care system of the Commonwealth. I will also address the issue of the administrative organization that we have developed to expedite the use of the funds available to take care of those patients. ah ‘» _ MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 65 / The first patients identified with AIDS diagnosis were admitted to our hospitals during fiscal year 1983-84. > Since that year, our hospitals have admitted more than 3,000 =~ = = HIV and AIDS patients at an approximately cost of $100 omnes a ——— million for the whole time. ee The average length of stay of these patients is 15 days per admission, and each patient is admitted about three to five times a year. Seventy percent of those patients were _ intravenous drug abusers; 72 percent between the ages of 20 to 39 years, and 90 percent from 20 to 49 years old, and 60 a to 69 percent of those patients died. We estimate that during fiscal year 1990-91, our | hospitals will admit about 1,200 patients, with 18,000 patient-days of care. The cost for the system to take care . ey of those patients will be $16.8 million. Those costs are funded exclusively from the regular operating budget of the agency and represent 13 percent of the Commonwealth budget allocated for inpatient services at the public hospital. In addition, the public health care system spends between $6 and $7 million annually for treating HIV and AIDS patients at the emergency rooms and OPD clinics of the pipiens hospitals. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 66 It is very important to mention at this moment that the Commonwealth of Puerto Rico receives only $79 million a year from the Medicaid program for the provision of health care services to the more than g1.8 million medically- indigent patients who qualify according to the parameters established by the Medicaid program. The island’s government does not receive additional funds for the increased costs incurred for HIV and AIDS patients. As a result, the costs incurred for treating HIV and AIDS patients in the public hospitals has the effect of reducing the resources available for the treatment of other patients that depend exclusively on the government services. If the tendency of utilization of the hospital services continue at the same rate of the past five years, by the year 2000 more than 50 percent of the budget available for the public hospitals in Puerto Rico will be dedicated to the attention of HIV and AIDS patients. Budget for HIV and AIDS patients in ambulatory services. For fiscal year 1990-91, the budget available for HIV and AIDS patient programs for prevention, diagnosis and ambulatory treatment services represents a total amount of $15.2 million. Of that amount, $4.3 million represents fo ee dd ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 So oe ne eee tee ml _— 67 allocation of funds from the Commonwealth of Puerto Rico, and $10.9 million are appropriations from the Federal Government. That amount includes $4.6 million that we expect to receive from the Ryan White legislation. During the present fiscal year, the Commonwealth of Puerto Rico increased by $3 million the amount of State funds allocated for the development of a comprehensive plan to take care of all the services required by. HIV and AIDS patients in the island. By next year, we expect that amount to be duplicated. With the $4.2 million of State funds and an additional investment of $1 million from the regular operating funds of AFASS, we established seven Regional Centers for the provision of comprehensive health services to those patients. Those centers are part of the network established under the coordination of the Central Office for AIDS Affairs to implement the plan. During this year, AFASS introduced changes in the organization and procedures of the agency to expedite the use of funds available, in particular the Federal funds. We decentralized the operations of the program and delegated all the control over the budget and administrative ah MILLER REPORTING CO., INC. §07 C Street, N.E Washington, DC 20002 (202) 546-6666 68 procedures to the program directors and the regional direc- tors. We developed and implemented a Manual for the Ad- ministration of Federal Funds. That document specifies all the procedures that have to be performed to implement a Federal program. It includes procedures to be performed before and after the notice of grant award is received. Important areas such as budgeting, accounting, creation of positions and recruitment of personnel, purchasing of equipment and supplies, contracting professional and other services, are defined in the manual in detail. It provides for a continuous monitoring of the use of the funds. We designated a Federal Funds Coordinator at the Office of the Executive Director of AFASS who is responsible for monitor and coordinate with the program directors to guarantee the use of 100 percent of the funds available. As a result of this reorganization, during the present budget period, we are going to expand over 90 percent of the funds available in this project, and this percentage will reach 95-100 percent by next budget period. The actual organization of the HIV and AIDS programs through the Central Office of AIDS and the Regional Network of HIV and AIDS Centers as well as the development of ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 for special projects are very important to continue our 69 a comprehensive plan to take care of all the programs related to this disease will facilitate the performance of the program objectives and the coordination between AFASS and the program. The cost for providing services to HIV and AIDS patients will continue the increase observed during the past years. Those patients depend upon the governmental system to get the services because most of them cannot afford the cost of the treatment. The health plans and insurance do not provide coverage for all their treatment. The Commonwealth of Puerto Rico has developed an organization and a comprehensive plan to implement all the programs necessary to take care of HIV and AIDS patients and to prevent and educate the whole population about the disease. The Government is spending more than $25 million in providing services to HIV and AIDS patients in Puerto Rico. We need more funds from the Federal Government. An increase re (te ca in the Medicaid program for the island and more appropriations ——— — a ee efforts to provide the best possible health services to the victims of this idemic disease. Thank you for permitting me to address you. ah MILLER REPORTING CO., INC. $07 C Sureet, NE Washington, DC 20002 (202) 546-6666 70 (Applause. } CHAIRMAN OSBORN: Thank you very much. Dr. Otero? . DR. OTERO: Dr. June Osborn, Chairwoman of the Commission, distinguished members of the National Commission on AIDS, Dr. Antonia Novello, Surgeon General of the United States, Dr. James Mason, Assistant Secretary of Health, it is a great honor and responsibility for me to testify before you on this occasion. I will take license to tell a personal experience before my formal presentation. I will testify in memory of my first pediatric AIDS patient, who died this year. Xavier was a very poor child, born to an i.v. drug user mother. He died at the age of three. He was receiving intravenous gammaglobulin in one of our programs here in Puerto Rico, and he died this year. I am here testifying in his memory, because for us in the U.S. Public Health Service and I as a primary care physician, AIDS is more than numbers. AIDS is people--people suffering. If the timer allows me, at the end of my presenta- tion, I will tell you a different Christmas story. Since the onset of the HIV outbreak, the Federal ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, D.C. 20002 (202) 546-6666 71 Government, especially PHS, has been involved in the funding of a variety of programs in Puerto Rico in order to deal with this disease. The Department of Health and Human Services through its agencies has taken the initiative for surveil- lance, monitoring, education, research, training and develop- ment of health care service programs. A key role has been played by the U.S. Public Health Service Region II Office and its Regional Health Administrators, the late Dr. Vivian Chang and Mr. Raymond Porfilio in advocacy, consultation and strategic planning to address the serious threat of AIDS. Region II includes three of the areas in the Nation with the highest rates of HIV infection: New York, New Jersey and Puerto Rico. Region II has appointed a regional AIDS coordinator. This individual is responsible for the coordination of programs for HIV/AIDS patients throughout Region II. Federal agencies have been offering extensive technical assistance and orientation to the Commonwealth for the establishment of effective programs that are responsive to the needs of the people with AIDS. The CDC, the Food and Drug Administration and other DHHS programs have assigned ah mL LER REPORTING CO., INC. 507 C Suet, NE Washington. DC 20002 (202) 546-6666 72 staff to Puerto Rico to collaborate with the Commonwealth's AIDS programs. Financial support has been provided to the Commonwealth Department of Health, the Department Against Drug Addiction, the Department of Education, the San Juan City Department of Health and other government agencies, public and private universities, and community-based organiza- tions. Initially funds were allocated for HIV/AIDS Sem — see ae = > surveillance, the early diagnosis of cases and the education —s of HIV-infected individuals and those others with high risk (a pg ee es 3 behaviors. Other funds were allocated for the education of Pee ee -3 health professionals and other individuals expected to deal = ee directly with AIDS patients. Later, funds were given for a research and to support the delivery of services to AIDS debit patients and their caretakers. According to the data available to the U.S. Public Health Service Sub-Regional Office, approximately $34.8 million has been provided for HIV/AIDS programs in Puerto | Rico, including $20.3 million for community and migrant _ health centers programs during FY90. These funds have been awarded by the following PHS agencies: Centers for Disease Control; Alcohol, Drug Abuse and Mental Health Administration; ah MILLER REPORTING CO., INC. $07 C Sueer, NE Washington, DC 20002 (202) 546-6666 73 Health Resources and Services Administration, and NIH. Of the FY90 funds, 14.6 percent were allocated for prevention and education to the community; 60.5 for health care services, and 16.9 percent for research. I am including the amount for the community and migrant health centers. In addition, a significant proportion of other resources not earmarked for the provision of services to HIV/AIDS patients are in fact used for such purposes. Among these can be identified Veterans Administration resources, Medicare funds, Medicaid funds, Maternal and Child Health Care Block Grants, family planning funds, Stewart McKinney Act funds for health care services for the homeless, and others. The amount of resources from these programs used for services for persons with AIDS is definitely considerable. Medicaid funds. The local Medicaid agency is aed unable to identify the specific costs that are associated with persons with AIDS in Puerto Rico. The Commonwealth of —— Puerto Rico has a Medicaid ceiling as compared to the rest of nN the Nation. For 1989 and subsequent years, the Title XIX an ceiling in Puerto Rico is $79 million, to serve 892,984 ed Medicaid-eligible individuals, which represent more than 27 a ey, ah MILLER REPORTING CO, INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 74 erce i i For fiscal year 1990, estimated Medicaid costs were $386 million, making the — Commonwealth’s share $309 million. a -_ The Medicaid Agency does not cover costs for AZT or pentamidine for most patients. Persons with AIDS are dependent mostly on a Public Health Service AIDS grant of about $800,000 for 1990 or pay themselves for the medications. At a mid-range yearly AZT cost of $5,000, only 160 persons out of a total of 1,600 would benefit from such funds. A number of AIDS patients returning to Puerto Rico ae from the mainland to be with their relatives during the worst part of their disease are faced with a lack of medications that were prescribed in mainland programs and are to be left without any treatment at all on occasions. The Commonwealth pa nen has been negotiating for a gradual increase in the Medicaid eo. o _ ceiling for the island for future years. If this is ac- ene complished, surely more Medicaid-eligible HIV/AIDS patients owes ee eee will be able to receive additional services including HIV/AIDS treatment at the Department of Health facilities. = a, The 15 Community and Migrant Health Centers funded >» under Sections 330 and 329 of the PHS Act in Puerto Rico received $20.3 million for FY90 to provide comprehensive MILLER REPORTING CO., INC. 507 C Street, NE. Washington, D.C. 20002 (202) 546-6666 75 primary health care services to the medically indigent population in Puerto Rico. These centers served in 1989 12 percent of the population of Puerto Rico. Since 1987, goals and objectives directed to HIV/AIDS patients have been incorporated in each center’s annual health care plan. In addition, the center staff have been receiving training on AIDS from the University of Puerto Rico AIDS Education and Training Center, a sub-grantee of the New York ETC, and from continuing education activities sponsored by the National Health Service Corps. Pre- and post~-HIV counseling is given to users of the services through an agreement with the Department of Health. Some centers are in the process of participating in clinical trials and research projects for HIV/AIDS patients through the University of Puerto Rico, Ponce School of Medicine, and the Central Office on AIDS. All Community and Migrant Health Centers are involved in a community education plan addressed mainly to the youth. One of our projects, the Playa de Ponce Diagnostic and Treatment Center, was awarded $500,000 by BHCDA this year for the provision of preventive and primary health services to the HIV patients in their service area. This center will ah MILLER REPORTING CC., INC. 507 C Suet, NE Washington, D.C 20002 (202) 346-6666 76 also receive moneys from the Office of Substance Abuse Prevention for the prevention and treatment of substance abuse and HIV individuals. It is projected that this center will serve more than 100 HIV-infected individuals in the area of Ponce. A new dental clinic that will service AIDS patients will be built soon. The Ponce municipal government is financing this construction. I must mention that the Puerto Rico Academy of Medical Directors, an organization that includes all the clinical directors from the Community and Migrant Health Centers in Puerto Rico, has developed a clinical protocol for 1 the comprehensive management of HIV infection at the primary care level in Puerto Rico. This document was prepared under the leadership of a distinguished Commission officer, Dr.Rena [phonetic], and a group of other fine clinicians from Puerto Rico. This valuable document, which has been given to the Commission, was published recently by the U.S. Public Health Service Region II Office-- VICE-CHAIRMAN ROGERS: Dr. Otero, may I interrupt you briefly. I have to be the bad guy here. And we are anxious to hear your Christmas story, so we hope you can conclude rather swiftly. ah MILLER REPORTING CO., INC. $07 C Street, N E. Washington, DC 20002 (202) 546-6666 77 DR. OTERO: Okay. I will skip the rest of my presentation and go to the comments. The U.S. Public Health Service has been responding to the HIV outbreak in Puerto Rico with fiscal and human resources for the past years, and is committed to continue funding programs. Occasionally, programs have not effective- ee = ly used some of the funds during the prescribed period, and ee ee as a result subsequent funding levels have decreased, and the — ny unobligated Federal balance was applied to offset new grant —a- — Se awards. a It is therefore necessary that the best stewardship [a a, be executed for the administration of the limited resources ~resource ene available from the Commonwealth, the municipalities, the U.S. Public Health Service and the community. eee, OO ™~ Coordination of services is important in order to avoid duplication of efforts and to promote an efficient networking with community organizations. The Commonwealth and the local agencies need ec neo further technical assistance in the preparation of grant applications that can compete more favorably with those from other areas of the country. Whenever possible assistance —! aeneeee aaa during the pre-application phase should be requested from —“etemeen: ah MILLER REPORTING CO., INC. 507 C Suect, NE Washington, DC 20002 (202) 546-6666 78 Federal agencies. In this way, funds will be awarded to areas of greatest need and not to places that can put ona good application. It is a matter of need, not a matter of literary experience. Any efforts to obtain a raise in the Medicaid ceiling should be continued. And it is of utmost importance to continue prevention services. Finally, the spread of AIDS among Latino, Hispanic and Puerto Rican women and children in Puerto Rico is of great concern to all of us. It is important to prepare and plan additional materials and focused programs for these populations. Specific educational strategies aimed at the prevention of HIV infection among young people is necessary, and we must increase the services for the prevention and treatment of substance abuse among the Puerto Ricans. Later I will tell you the Christmas story. VICE-CHAIRMAN ROGERS: We'll get your Christmas story during the questions. Thank you.. Dr. Rivera-Dueno? DR. RIVERA-DUENO: Good morning, Dr. Mason, Dr. Novello, Dr. Osborn, distinguished members of the panel, ah t MILLER REPORTING CO., INC $07 C Street, NE Washington, DC 20002 (202) 346-6666 79 thank you so very much for being in Puerto Rico and listening to our problems. Thank you once again. For the sake of saving time, I will use some transparencies which we can go through very quickly. {SLIDES ] | As an overview, here represented to you is the statistical data of the cases reported in San Juan. I am talking about San Juan City only, because that’s where our program is. The statistical data shows that in 1987 the cumulative cases of AIDS were 369. It increases cumulatively speaking to 582 in 1988, and right now, up to October 31, 1990, the number of actual AIDS patients was 981. Then, the HIV plus the ARC cases gave us a total of 2,502 cases reported in San Juan, with a mortality rate of 54 percent. At present, 30 percent of all AIDS cases reported in Puerto Rico have been reported in San Juan, and over 50 percent of them have been reported in the Statistical Metropolitan Area of San Juan, and most of these patients come to our services. Putting it in a more summarized way, up until October 31, 1990, in the Statistical Metropolitan Area, we ah MILLER REPORTING CO., INC. $07 C Street, N E. Washington, DC 20002 (202) 546-6666 80 had a rate of 69.3, which was the fourth in the United States for metropolitan areas. The cumulative cases, as I have said, were 981; cases between 20 and 39 years old, 73 percent; the percentage of i.v. drug users, 71; the community pediatric cases, 42, and 88 percent were pediatric cases associated with i.v. drug users. As you can see, our pediatric problem is a big one here in Puerto Rico, and according to statistics is the second after Washington, D.C. Because of this particular situation, in 1987 there was a need to put together the public sector and the private sector to try to deal with this situation in San Juan. So the San Juan AIDS Institute was created at that time, and the objective basically was to develop and implement a comprehen- Sive system of health care for AIDS patients in San Juan, Puerto Rico to substitute for the existing traditional system based on inpatient care; to emphasize prevention, education, surveillance, early detection, and alternative types of service such as home care and hospice care as well as inpatient care and some research activities; and also to develop a cost-effective system for health care delivery in San Juan. Those were our main objectives. ah MILLER REPORTING CO., INC $07 C Sueet, N E. Washington, D€ 20002 (202) 346-6666 81 Then, immediately we started to work trying to put together what was needed to come forward with these services that we had committed ourselves to. As you can see, this is a qualitative evolution of services of the San Juan AIDS | Institute. In 1977 what we had was basically just hospitali- zation services, inpatient care, mainly in an open ward with regular personnel. Let me tell you that lots of fear and prejudice obviously accompanied this type of delivery of care because everybody was afraid of the disease. Eighty-six percent of the cases were hospitalized, and 14 percent were treated at emergency rooms and medical centers. There was no actual outpatient delivery of care. In our first year of inpatient services, 1988, immediately an exclusive AIDS ward was created, with 12 beds and trained personnel. The emergency room was expanded to have another emergency room at the Rio Piedras Diagnostic and Treatment Center, and an outpatient ward was established there, where pre and post counseling was offered, case Management on a limited basis, and education was also offered. A unit of epidemiology was also started in that very first year. An extended care facility was started at one complex here in San Juan with five beds. ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 82 In the second year, 1989, our inpatient ward was increased from 12 beds to 20 beds exclusively for AIDS patients. All require medical specialists--pneumologists, gastroenterologists and so on were on hand. And isolation rooms were established because, as was represented before by Dr. Castro, we had a tuberculosis problem here, so isolation rooms were established with the adequate equipment required for that. Mental health services were provided through psychiatrists and psychologists, and rotating residents were paid by the San Juan AIDS Institute to assure us that we would have physicians rotating through these particular wards. A brand new pediatric unit was established, providing ambulatory services. It has an infusion unit, established a health education program for families and also for the schools in the San Juan area, and case management was started as well. The outpatient facility at Rio Piedras was expanded, and we now have followup cases, mental health services, hematology services, infectology, and a detoxification clinic for some of our patients. Also, the services for ambulatory care were expanded to six more Diagnostic and Treatment ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C 20002 (202) 546-6666 83 Centers aside from the one in Rio Piedras in that particular second year, 1989. At these particular sites, which were distributed throughout the city, we had outreach services, seroprevalence services, health education, pre and post counseling, STD clinics, risk reduction services, and case management. Besides that, we also continue to provide preventive services, and at least some efforts at the shooting galleries and different schools. We started with a new magazine called "SIDA Vances" [phonetic]. Also, we established laboratory services, day care, home care, and we also established relations with the Catholic Church for a hospice here in San Juan, and a fullblown Department of Epidemiology was started. In the fourth year of this qualitative evolution that I’m trying to describe to you, this particular year, aside from everything that you have seen in the first and second year, we added in the third year clinical trial units. At this moment, we have two going on for adults and two for ei, Ny pediatrics. The outpatient clinic has been expanded from six to nine to cover all Diagnostic and Treatment Centers es throughout the city, and on December lst we will start the Le, | first AIDS treatment and care center at our facility in the an ee ah MILLER REPORTING CG., INC. 507 C Sureer, NE Washington, DC 20002 (202) 546-6666 85 has been reduced from 22.3 in 1987 to 11.9 in 1989. Remember that most of the activity in 1987 was basically hospitaliza- tion, inpatient care. And the number of beds, as I already said, increased from 12 to 20. The cost per day of hospitalization or inpatient services was $348 in 1987; it has increased to $452, but we have added lots of other specialists and other types of services. As far as the outpatient services, as you remember, in 1987 there was practically nothing except for some clinics at the medical center, and the outpatient visits at that time were 358. It has increased to 15,378 in 1989. Visits per patient have increased from 4 to almost 9, and the cost per visit has been reduced from $246 to $128. Home health services were not in existence in 1987, and we have been able to put in place a home health care program in i989 which served 1,460 for a cost of $150 per visit. Let me mention that a sample was taken-- VICE-CHAIRMAN ROGERS: Dr. Rivera, you'll have to close fairly shortly, but go ahead. DR. RIVERA-DUENO: The cost per patient has been ah T2S2 MILLER REPORTING CO , INC. $07 C Street, NE Washington, DC. 20002 (202) 546-6666 86 reduced from $16,000 to $12,000, and the municipal appropria- tion has been $3.2 million for these past three years. Finally, these are the plans for the future--you have already heard Dr. Borras mention it. I just want to conclude by saying that the San Juan AIDS Institute, a not- for-profit corporation, making use of all available mechanisms like case management, early detection and so forth, has demonstrated that with a good infrastructure, an effective administration and a comprehensive ambulatory setup, we could provide for an effective cost containment effort. There is still a lot to do, and we hope to get there. Thank you so very much. (Applause. ] CHAIRMAN OSBORN: Thank you all, and thank you for being willing to live within the time constraints that are too short, always. Harlon, I guess you had a question, and then Ron. COMMISSIONER DALTON: Actually, I have two ques-~ tions. The first has to do with technical assistance and the second with funding for medications and drugs. I am confused on the question of technical assis- ah MILLER REPORTING CO., INC. $07 C Sereet, NE Washington, DC 20002 (202) $46-6666 87 tance. One of the panelists on the first panel indicated that the HRSA money that had been received here in the Commonwealth has not included so far any technical assistance funds. One of the current panelists urged that technical assistance be provided to help people at a minimum qualify for other grants. And I have heard it said that there is at least some question about whether or not Ryan White funds will be made available because of the fact that in fact agencies here on the island have not in the past taken advantage of technical assistance. So could someone please clarify this issue for me? DR. OTERO: Technical assistance has been provided by HRSA to local programs to the Commonwealth and the city. Perhaps more intense technical assistance is needed. And as I mentioned in my presentation, when one comes to competing applications, and you are not dealing with entitlement programs, and you have to submit an application, the Puerto Rico programs on occasion are not able to submit the best applications. What is perhaps needed locally is staff--and perhaps it can be a full-time person or a person who comes here more frequently--to assist local government and programs ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 88 to review the applications before they are submitted in order to review the guidances so that funding will be available. Of course, Puerto Rico does not have funds to pay for a grant writer, which in other programs in other areas of the Nation, there are professional grant writers who will write the grants for the universities or the departments of health. COMMISSIONER DALTON: And who are you suggesting should pay fer this grant writer--which I agree is a terrific idea. DR. OTERO: Well, I’m not saying a grant writer, because PHS officials cannot pay for a grant writer. But we can provide technical assistance. MS. TORRES: Within the Department of Health, we need technical assistance for HRSA at the same level of CDC. CDC designates technical assistance directly to our programs, and those people help us in the development of the proposals and some meetings on the proposals, and also technical assistance in the performance of the programs and projects within the budget period. We need the same type of assistance for the HRSA projects also. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 ~~ —= 89 COMMISSIONER DALTON: So then in fact are you two —_—_-==_ = Se a in agreement that HRSA should earmark more money for technical ee ee assistance which could be used for the purposes that you were a “ nS aT oe describing? DR. OTERO: Yes, I agree that additional technical assistance should be requested. DR. RIVERA-DUENO: I just want to mention that I wouldn’t mind having people from HRSA here, because obviously they can help a lot, but I also have to be fair, and they have been helping us a lot in trying to put things together. COMMISSIONER DALTON: And now with respect to medicines and drugs, let me see if I understand the picture. Medicaid provides virtually no money in Puerto Rico for AZT, pentamidine and other drugs because of the cap. The Common- wealth provides--if I understand the testimony~--no money for AZT, pentamidine. The City of San Juan provides no money. The AIDS Institute heretofore--if I understand your written testimony--has provided no AZT because it is not in your contract. So that the only money that is being provided for AZT and, I take it, for pentamidine--tell me if I am wrong-- is the 900 or so million dollars that has been special ah MILLER REPORTING CO., INC. $07 C Street, N.E. Washington, DC. 20002 (202) 546-6666 90 Federal appropriations which, if I understand your testimony, would cover maybe 160 people when in fact there are ten times that many people who would qualify for AZT. If I understand your testimony, 38 percent of the people you serve might well qualify for AZT, but in fact you are not in a position to give any of them AZT. If I am right about that, what is going to happen? I mean, is the Ryan White bill the only hope for paying for AZT and pentamidine, let alone other drugs to deal with opportunistic infections and other manifestations of the disease? DR. OTERO: In my presentation I mention that some HRSA funds will be used for the treatment of patients, in this case for the people in the Ponce area, some NIH funds that are used for research, some patients are already receiving other treatment. Ryan White will bring some hope to Puerto Rico both for San Juan City and for the rest of the island. And if the Medicaid ceiling is raised and there is the commitment of Secretary Sullivan to assist in the raising of the cap, perhaps more hope will come, and things will be better in the near future. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 91 COMMISSIONER DALTON: Although as I understand your testimony, the negotiation is for a gradual raising of the Medicaid cap-- DR. OTERO: Yes, yes. COMMISSIONER DALTON: --so we are not talking about a dramatic increase, I gather, even if you are success- ful in these negotiations. CHAIRMAN OSBORN: Mr. Jarrell--let me take an opportunity to thank Ron Jarrell for sitting in for Belinda Mason at this meeting. We are very glad that you could join us, and you get the next question. After that, Dr. Novello, Dr. Rogers, Diane Ahrens, and then we are going to need to ;move fairly promptly. MR. JARRELL: I’11 make my question real fast. It is again also on the technical assistance from HRSA related to the Ryan White bill. My concern as a person living with AIDS directing a community-based organization is that the plan that the Government of Puerto Rico has outlined is very dependent on the community-based organizations, and I am concerned as to what assistance the government has given the community-based organizations in seeking the technical assistance from HRSA ah MILLER REPORTING CO., INC. 507 C Street, N E Washington, DC 20002 (202) $46-6666 92 for funding from the Ryan White bill. MS. TORRES: From the Ryan White appropriations, we are planning to use about $2.3 million for community-based organizations and $2.3 million for drugs and medicines, and in addition, from the State funds we are using now, some assistance to community organizations, not in the amount they need, but we will bring some assistance to them according to the funds that we have right now. In addition we have about half a million dollars for drugs from the State funds during this year, but we need more than $3 or $4 million for drugs and medicines. So we need the funds from Ryan White and also an increase in Medicaid in order to have the funds available for the whole treatment that our patients need on the island. MR. JARRELL: But basically the main question I was trying to get at, and maybe I was unclear, was the government assistance to the community-based organizations in competing for these funds from the Care Bill. MS. TORRES: From Ryan White, $2.3 million will be used for community-based organizations. CHAIRMAN OSBORN: Before proceeding in the order I stated, Dr. Mason suggested it might be important to qualify ah MILLER REPORTING CO., INC, 507 C Street, NE Washington, DC. 20002 (202) 546-6666 93 some technical matters about the cap. DR. MASON: As you said, a point of clarification. The Medicaid cap for the Commonwealth of Puerto Rico was placed there by Congress, and Secretary Louis Sullivan after his visit here several weeks ago went back and said he would strongly support raising that cap so that more money could become available, but that would require Congressional action and not action that the Secretary or President Bush could | take. With regard to Medicaid and AZT and pentamidine, — a ce esa again they are both licensed drugs and can be provided under Medicaid under Federal law, but this is a local decision not Pe to provide them, I would guess, because of the limited amount = of money that is available. CHAIRMAN OSBORN: Dr. Novello? SURGEON GENERAL NOVELLO: Just one question, and that is in the gay community it has been well-established that prevention has been key in lowering the prevalence and the incidence, and this is a wonderful finding. It is also known that if you really do good prevention, then your cases of AIDS can be diminished from 30 to 50 percent. ah MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC 20002 (202) 546-6666 94 From your budget, your prevention moneys, do you think they are enough to utilize the prevention message out there for the people today so that in Puerto Rico we can have | a lowering of the incidence? And if you do think it is enough, are we using it accordingly--is it scientifically accurate, sensitive to the needs of the people, and in the places where they go to find it? [Applause. ] DR. RIVERA-DUENO: Well, I think you have addressed the key point of the whole morning for me, which is prevention education. Unfortunately, we have been so busy working with > the little amount of money, trying to reach the patients to provide them with care, that we have practically nothing left a _ SS, for such a very important issue. hie At the Institute, we have been trying to get other alternatives like the Robert Wood Johnson Foundation and other foundations to help us, and even though they have been very responsive, unfortunately the amount of money we are getting is not enough to really get into the areas. You have to remember that our main population is i.v. drug users, and those are not the best ones to utilize the classical way of ah MILLER REPORTING CO., INC. 507 C Seect, NE Washington, DC 20002 (202) 546-6666 95 education, so we have to go a different route which is more costly and almost on a one-to-one basis. CHAIRMAN OSBORN: . Diane, then David Rogers, and then we’ll have to break. COMMISSIONER AHRENS: I am back to the AZT issue. I was recently at Burroughs-Wellcome in North Carolina and was told by the epidemiologists there that they had a program which would offer free of charge AZT to any person with AIDS who needed it and could not get it. And this was done through the primary care physician making a request to Burroughs-—Wellcome. Now, it may be that everyone is aware of that; it may be that people do not believe that. But I am wondering if that has ever been tested here and whether anyone has found that to be an effective way of receiving the AZT that is needed. DR. RIVERA-DUENO: As far as I know, this is the first time I have heard about that particular offer, and we will be there at their door, knocking, as soon as possible. We have been receiving some grant money--let’s call it that--for a clinical trial unit with Burroughs-Wellcome here in Puerto Rico, but this is for just a specific patient ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 96 who meets certain standards for the trial that we are doing there. But the way you have mentioned it, I don’t know of anything here in Puerto Rico. COMMISSIONER AHRENS: Thank you. VICE-CHAIRMAN ROGERS: Because our time is short, I will forego questioning but just thank all three of you for some eloquent testimony. We have learned much this morning, and we will learn more during our next two days. It is powerful, and it is impressive, and I congratulate you on what you are trying to do. Thank you. fApplause. ] [Break. ] CHAIRMAN OSBORN: Let’s get started because we already late in a very important segment of the program. I think since Jorge is here and willing to start, we'll be very happy to hear from you. Thank you for joining us. I am sure you have heard me say that we have a timer so we can try to stay within some constraints of time, so if you hear it go off, that means about a minute left. We appreciate everyone’s willingness to put up with that constraint so that we have a chance to interact with you. MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 97 Jorge Irizarry. MR. IRIZARRY: ACT UP is a government watchdog organization and its achievements very well attest to this fact. ACT UP Puerto Rico has a place in these hearings among the other organizations, and I strongly resent having to use my HIV status to get a place. fApplause. ] Making it clear that I am speaking as an activist for ACT UP, I will proceed. CHAIRMAN OSBORN: Excuse me. Let me just express my regret for not having represented you the way you intended. I think the staff felt that you were represented as you wished when they put this together, but there was no intention to misrepresent you. MR. IRIZARRY: Ten years after the AIDS crisis started and four long years after the Interagency Commission was created, just recently was put in action the most erroneous, shortsighted, insensitive and unrealistic plan | possible in order to deal with this crisis. Meanwhile, Puerto Rico has one of the highest incidence rates in the Nation. There is an urgent need for education--education at ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 346-6666 98 all levels and angles; education toward prevention at all levels of school and available to people out of school, i.v. users, sex workers, and to all the communities in general. The government should reach into the community, ll inform them, and let them do their own teaching among peers. This concept of peer education has been highly successful in the gay community, Latin community, and other communities in the United States. But the OCAS public information I see every day in the newspapers is highly misleading and vague. It tells people to protect themselves but doesn’t tell them how, and it gives the false and dangerous idea that somehow you can identify people who are HIV-positive or with AIDS. Education toward living with the virus or living with AIDS is nonexistent, and the system does not see it as an alternative. a There is no primary care for PWAs--people with AIDS. One would say that without this prophylaxis and acute treatment, medicines wouldn’t warrant full benefits, but these last two are available to some privileged ones, mostly to those so-called "innocent victims". Is the list of priorities of our dysfunctional ah MILLER REPORTING CO., INC. 507 C Street, N E Washington, DC 20002 (202) 546-6666 99 Health Department ruled by prejudice, homophobia, and other ill-conceived judgments? Prioritizing the definitive list of problems to be soled must be humbly resolved. A comprehensive disaster management master plan must be developed that addresses all of the problems currently affecting the AIDS crisis in Puerto Rico. Within a call of a state of emergency, interim crisis Management must be implemented not in a.void, but in a clear and pragmatic observation of a long-term reconstructive plan. It is time for cures for this dysfunctional system- -no more shortsighted remedies. I am sorry to say Dr. Rullan does not seem up to this task. Even the Mayor of San Juan, the city with the highest incidence in Puerto Rico, has publicly said the government response to this crisis has been one of denial and highly ineffective. OCAS asks people who think they are at risk to get tested. Well, after being tested and knowing my status, what is next? Right now, there is nothing but to leave my family, my friends and my house and go to the mainland, in search of treatments available there. I see nothing for me here but ignorance and indifference. and the same goes for people with AIDS. If I ah MILLER REPORTING CO., INC, $07 C Street, NE. Washington, DC 20002 (202) 546-6666 100 had to take AZT, the government refuses to buy it with Medicaid funds. If I were rich and could afford it and then it failed, there is no expanded access that I know of for DDI or DDC on this so-called tropical island. The case for providing DDI and DDC with new drug application status and approving both for marketing has been masterfully laid out by both in the Consensus Statement on DDI and DDC Licensure, approved by over 40 organizations, investigators and physicians, and in Project Inform Perspec- tive No. 9 of October 1990. Access to advanced forms of treatment is inherently improved when new drugs become available on a prescription basis. In the case of Puerto Rico, as witnessed in the murderous Medicaid coverage and AZT availability scandals currently being perpetrated against the people of Puerto Rico, marketing approval is meaningless in the face of an explosive pandemic like AIDS. Three years after its licensure and prescription availability, AZT, the only approved therapy to combat destructive HIV progression, remains available to only 315 adults and 70 children. The Commonwealth admits ers that over 20,000 adults already enrolled in Medicaid aré currently eligible to receive the therapy but Cannot. eee ah MILLER REPORTING CO , INC. 507 C Sueet, NE Washington, DC. 20002 (202) 346-6666 101 Before AZT as a monotherapy becomes available on the island--by the way, the same island where it is manufac- tured--it may be obsolete. So when considering access issues in Puerto Rico, the inevitable approval of DDI and DDC will widen the gap between prolonging the life expectancies and expediting death. While the more privileged patients of the mainland will be extending their life expectancies, inversely, the relative death rate in Puerto Rico will skyrocket. As life expectancies are extended with the privilege of access to anti-HIV and anti-opportunistic infections drugs we, the second-class citizens in Puerto Rico, will be riding a steady and constant decline in comparative life expectancies. ( opportunistic infections specific to people living in the tropical climates are not being studied at the same rate as these opportunistic infections of white men.) Puerto Rico must take the initiative and start a real aggressive part, promoting the experimental clinical trials. Im Puerto Rico, the lack of access to primary health care is the greatest obstacle to the start of these trials. Clinical trials can only be seen in the context of health care. A sustained lack of health care means a person ah MILLER REPORTING CO., INC. $07 C Street. NE Washington, DC. 20002 (202) 346-6666 102 will not be well enough to enter a clinical trial. The needs of AIDS and HIV clinical trial par- ticipants include primary health care, chemical dependency treatment, social services, child care and respite care. I do not see Dr. Rullan working to reach these goals. Instead, the government imposes on us a plan that seems to be modelled after the action plan in Hawaii, which has one of the lowest incidence rates per capita in the Nation, has a different culture and different social problems. The government provides a system doomed to failure where, for example, Fajardo has 122 patients eligible for AZT treatment, but only 38 receive it, giving the infectologist the right to choose who will receive it and who won’t. Arecibo’s center is not functioning at all. CLETS has been practically dismantled. Caguas and Ponce--the city with the second highest incidence in Puerto Rico--submitted protocols badly needed and were denied any allocations for it. Here, I have two receipts for a patient at the district hospital in Ponce who was prescribed pentamidine. That person had to buy it with his own money--the hospital doesn’t supply it--and he spent two days looking for somebody to administer it because the doctor does not know how to MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 administer it. By the way, all of a sudden, the patient was released last night. I guess you are visiting that hospital today. Also, $2.3 million assigned to Puerto Rico specifi- cally for home care has yet to show any benefits. To our knowledge, there is no home care at all in Puerto Rico. Dr. Rullan should be held accountable for this doomed-to-fail government plan, lack of vision, leadership and sensitivity, should recognize his inadequacy for this job and step aside, give up his three or four salaries, and leave, so somebody with more qualifications can do the job. The basic issue here is securing access in Puerto Rico to life-prolonging treatment in order that patients with this life-threatening illness have the opportunity to make their own informed decisions as to what their course of treatment will and will not be, while requiring absolute access to the latest treatments that modern research may bear. I will now conclude this with three major points to be addressed. First, Medicaid coverage of medically necessary Se treatments until all applicable existing laws are respected ee and adhered to which require the Commonwealth Government to eo. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 104 supply any and all medically necessary treatment to those people enrolled in Medicaid. Second, access to clinical trials of experimental —_— agents. Ethically designed and scientifically sound CTinical TLS studies of experimental treatments for all HIV-related conditions must be established in Puerto Rico. In doing so, drugs will be tested in the very people for whom they are intended before they make it to the market, while at the same time offering people with a life-threatening illness an opportunity to try a potential treatment that they may not otherwise ever have the chance to have. Third, socioeconomically and culturally appropriate education--for that matter, in Puerto Rico, education at all. Both of the aforementioned strategies have inherent in them the absolute necessity for education that takes into account historical, cultural, social and economic barriers. Such education is a dynamic and consuming effort that cannot cease and, sadly to say, has not started. Thank you. CHAIRMAN OSBORN: Thank you very much, and thank . you for being willing to be brief. We appreciate it. [Applause. ] ah MILLER REPORTING CO., INC. $07 C Suect, NE Washington, DC, 20002 (202) 546-6666 105 CHAIRMAN OSBORN: We‘’ll have an opportunity to interact after we have heard from the other witnesses on this panel. Dr. Ramirez-Ronda, welcome. DR. RAMIREZ-RONDA: Good morning, Dr. Novello, Dr. Mason, Dr. Osborn, distinguished members of the Commission. I want to thank the Commission for allowing me to present my data and my presentation this morning. In Puerto Rico, the cumulative number of AIDS cases by November 1990 was over 5,000, and the estimates of HIV- infected persons ranged from 35,000 to 200,000, depending on the database, risk group projections or others. And we heard this morning Dr. Rullan’s revision of 55,000 people infected. Irrespective of the numbers of the impact of HIV disease on an island of 3.2 to 3.7 million, depending on which census data we look at, is enormous. The patient with HIV disease requires intervention once his seropositive status is known at different stages. First, just close followup at intervals and then, when the illness progresses, there are therapeutic alternatives. It is accepted that patients infected with HIV benefit from therapeutic interventions once their lymphocyte T-4 count is ah MILLER REPORTING CO , INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 106 500 or less. At this stage it is recommended that patients who are willing and able to take medicine can be given zidovudine in a dose of 500 mg/day. Recent studies show that even 300 mg/day are effective. At this stage of illness the availability of treatment in Puerto Rico is variable. Patients at the San Juan VA Medical Center are able to receive any and all medication. The treatment is also available for patients with economic resources through private physicians and/or with their private health insurance plans. The availability of this early treatment to indigent patients is limited by the resources available in the public sector. A few patients in San Juan, Ponce and Mayaguez also receive the medication, and this has been expanded recently to Bayamon, Caguas and Fajardo specifically | in the last two months. Persons infected with HIV disease, once their T-4 cell counts fall below 200 or less, are candidates to receive prophylaxis against infections by Pneumocystis carinni. There is medical evidence that oral prophylaxis with trimethoprim-sulfamethoxazole, dapsone and sulfadoxine/- pyrimethamine is as effective as aerosolized pentamidine. ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 107 The availability of the oral prophylactic regimes should be widespread and without difficulty. The availability of aerosolized pentamidine is limited to the private patients, the San Juan Va Hospital patients, and a few cases in the San Juan AIDS Institute. There is a new effort in the Department of Health with regionalization of services in which this may be provided. I want to mention that aerosolized pentamidine, while needed for a few patients, is not better than other more cost-effective regimes and that the widespread implemen- tation of this modality of prevention without specific guidelines must be studied and weighed. Patients with HIV disease and T-4 counts below 200 are also subject to many complications, opportunistic infections, lymph node tumors like lymphomas, malignancies like Kaposis sarcomas, and others. Many of these patients end up in the public sector for the management of the complica- tions. Treatment is available for pneumocystis infections, tuberculosis and toxoplasmosis. Fiscal restrictions, lack of funds or restricted funds impose great difficulties to administered agents like ganciclovir and interferon in the ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 108 public sector with the exception of the VA. In the public sector, the DBA is committed to provide these patients with all their medical needs if indicated. The availability of medications to treat AIDS patients in Puerto Rico with antiretrovirals and other specific expensive agents is limited not by the lack of interest or knowledge, but by fiscal restraints. The availability of the newer experimental drugs in Puerto Rico was, until about a year ago, limited or nonexis- neat) tent. When the ACTU network was established in the U.S., Puerto Rico was left out probably because of 1) ignorance ee from the organizers that AIDS was a problem in Puerto Rico i , | and that there are qualified persons on this island, well- =p trained, and with expertise and experience; 2) apathy from a our side to get involved, or 3) misconceptions by some of the —_—_— my, drug manufacturers and their research departments of what In August 1989, at the initiative of the San Juan AIDS Institute, a group of health care professionals from the San Juan AIDS Institute, the San Juan City Hospital, the University of Puerto Rico School of Medicine, and the San Juan VA Hospital joined efforts, and with the help of ah MILLER REPORTING CO , INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 109 personnel from the ACTU Unit at Massachusetts General Hospital prepared and submitted an unsolicited proposal to the National Institute of Allergies and Infectious Disease to establish an ACTU in Puerto Rico. The proposal was returned and not funded. The interest to establish the unit continued, but not as a freestanding unit, but as a satellite unit of the MGH. This approach was fruitful and productive. The present infrastructure was fortified and brushed up. But because of budgetary difficulties, it was not possible to have another satellite unit in Puerto Rico having the MGH one at San Juan City Hospital. In San Juan, we have the outpatient facilities, the trained clinicians, the trained data handlers, laboratory personnel and, most important, the patients--a population of a large number of persons with HIV disease that can benefit from medications, including newer medications. This prompted the San Juan AIDS Institute to establish a Division or Department of Clinical Studies with an operational infrastructure. | At the same time, the efforts of the Infectious Diseases Research Laboratory of the San Juan VA Medical Center were effective in obtaining protocols to use new ah MILLER REPORTING CO., INC. $07 C Street. NE Washington, DC 20002 (202) 546-6666 110 experimental agents in VA patients with HIV disease. The Division of Clinical Studies at the San Juan AIDS Institute became a reality when the first protocol to study antiretroviral agents was established October 1, 1990 and with a second protocol to study a new antipneumocystis agent that will start December 1, 1990. Clinical studies and trials offer alternatives to treatment but are not the way to supply the treatment needs of the population of HIV-infected people in Puerto Rico. In the spring of 1990, the National Institute of Allergies and Infectious Disease requested proposals from minority institutions to established the infrastructure for ACTUs at those places. The medical sciences campus of the me 8 ee ee — TSS Se re apne te University of Puerto Rico School of Medicine submitted a proposal for establishment of an infrastructure for an ACTU | ee ee at the University of Puerto Rico School of Medicine. This grant was approved and funded. Hopefully in three years the — school of medicine at the University and the University Hospital will have the infrastructure t ill allow the ee institution compete as a site for an ACTU. a In Puerto Rico, the availability of some newer -— antiretroviral agents has been limited. Of course, most — Rane ah WILLER REPORTING CO., INC. 507 C Street, NE Washington, DC = 20002 (202) 546-6666 111 trials of DDI were by the ACTU group, which by design, Puerto Rico was excluded from. There have been few trials and tT little interest in the local epidemiology of HIV disease by a the manufacturers of DDC. Still, a few patients have Ce eae —_— received the experimental agents under the parallel tract development program. This has been limited to highly educated, well-to-do individuals, whose physicians accept the responsibility of filling out all the paperwork. The rate- limiting step in this has been the large paperwork require- ments of any experimental protocol. You need qualified people to fill accurately the forms. Once again, experimental drugs are important, but not the solution for the needs of treatment of many patients who have never received one dose of any antiretroviral drugs. At the present time we have in Puerto Rico several experimental protocols at the San Juan VA Medical Center and at the San Juan AIDS Institute. There are early studies on the dose effectiveness of d4T which ceased enrollment--just 15 patients were studied. A study comparing zidovudine in the regular dose, 600 mg/day, versus the same dose twice a day is underway at both of these institutions. In a third study in which the pneumonia caused by ah MILLER REPORTING CO., INC. 507 C Sweet, NE Washington, D.C 200602 (202) 546-6666 112 Pneumocystis carinii and with mild to moderate manifestations, a new agent 566C80, is compared to the usual treatment of trimethoprim-sulfamethoxazole. There are two other studies under implementation-- the use of DDI in patients on AZT without significant improvement of their illness, and the use of 566C80 as prophylaxis against PCP compared to another regime. The interest of the pharmaceutical companies in rc ~; _ i Puerto Rico related to HIV disease has improved. /Bristol- : a = — — Myers-Squibb has at present one study and going on further ane T Studies as well as additional agents. Burroughs-Wellcome initiated studies here and have at present to protocols. _ Of course, the potential for studies with other products exist since the trained people and the infrastructure exist. In Puerto Rico, there are also studies carried out by the University Children’s Hospital, San Juan City Hospital Department of Pediatrics, and the University Hospital at Bayaman on i.v. gammaglobulin in children in collaboration with the NIH, and a few pediatric patients receive AZT. A recommendation which I would like to suggest is that the efforts to establish clinical trials in Puerto Rico ah MILLER REPORTING CO., INC. $07 C Sueet, N.E Washington, DC. 20002 (202) 546-6666 113 be coordinated. We cannot have, or probably cannot afford to have, three or four units with separate infrastructures. A time to join efforts is here, and there is little or no need to have in San Juan three separate, individual units planned for clinical studies on AIDS. The best that can happen is solid funding of the infrastructure and well-paid personnel that will dedicate all their time to the efforts and not have to share private practice interest with the interest of the unit. AIDS in Puerto Rico is epidemiologically different from that reported by the consolidated report of CDC for USA, but similar-- VICE-CHAIRMAN ROGERS: Dr. Ramirez, we'll have to ask you to close fairly swiftly. I am pleased that we have your written testimony, so you might want to just give us your final punch lines. DR. RAMIREZ-RONDA: Yes, I'll conclude, since you probably have copies~-not of the revised version, but of the original version. What I would like to conclude with is there is no question that AIDS is a very important illness in Puerto Rico, that it has impacted us, and that the future essentially ah MILLER REPORTING CO., INC $07 C Street, NE Washington, DC 20002 (202) 546-6666 114 projects that the number of cases is going to keep on increasing and that it is going to compromise tremendously the financial resources. The availability of antiretroviral treatment is Pewee eee