17 18 19 20 21 22 23 24 25 1 /)-SB- det. PA " 1 bf2 NATIONAL COMMISSION ON AIDS WORKING GROUP ON SOCTAL/HUMAN ISSUES BE IT REMEMBERED THAT on the 9th day of July, 1990, at 8:30 a.m., the above-named group came on for discussion before LAURIE S. KOKORUDA, a Certified Shorthand Reporter in and for the State of Texas, at Parkland Memorial Hospital, 5201 Harry. Hines Boulevard, City of Dallas, County of Dallas and State of Texas, whereupon the following proceedings were had: ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 1 12 13 14 15 16 17 18 19 20 21 22 23 24 29 PROCEEDING S§ REV. ALLEN: Good morning. I would like to welcome you to the National Commission on AIDS Conference. Before I explain what we’re up to as a working group, I thought I would turn this over to the Chair of the National Commission Dr. June Osborn to explain some of the mission as a whole. DR. OSBORN: Well, I'm here to get a chance to take the benefit of your testimony today just as an interested observer really because the working group that Scott Allen has been chairing is well along in its deliberations and we'll be explaining more about that. I think it’s probably worth emphasizing some background information that you have access to there and letting you know a bit about the Commission itself which was -- began its work in August of last year. We're not a year yet into our two year charge that was -- we were created by an act of Congress in late 1988. And our very purpose of the Commission was made to be as independent as possible without a presidential commission, but rather the National Commission with five of our voting members ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 appointed by the Senate, five by the House, two by the President and three Cabinet secretaries as ex officio nonvoting members. And then the Commission in its first meeting was to elect its chairman which turned out to be me and vice chairman Dr. David Rogers. And we began our business and with Maureen Byrnes as our executive director which been since then looking for ways to be helpful and to meet the mandate given us by that act of Congress which was to try and move the national concensus on the epidemic and to be reactive and proactive i the context of both Congress and the executive far as national needs are concerned. It is our hope that unrealistic as it seemed at the beginning perhaps the moving of the national concensus is something that we can achieve in that we are a broadly constituted group both in terms of appointed authority, but also in terms of our makeup. We have members who provide AIDS expertise but from all manner of direction, so that we have attorneys and public health people, state health officers'" positions. Actually, there are minorities in the Commission. And, of course, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 you know Reverend Allen's important work, a number of people who have experience with community-based organizations. And with that as background, we found three different modes of operation: One is Commission hearings which we feel that we must in general hold in Washington because of the nature of the Commission itself. And we ask all of our members to be holding their calendars for those which occur every two months. Alternatively, we have tried to site visits in which we spend essentially full-time trying to see how things are going in areas either because of their regionalism or because of the nature of the problem we're dealing with epitomizes some of the things going on in the epidemic. And this represents a third format which we chose to try and get as much work as possible out of ourselves over a finite period of time which is to break down into what we've been calling small working groups in which a subset of commissioners under the leadership of one of the members of the Commission, in this case, Reverend Allen, will attack and address a problem that ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 looks as if it can stand to be addressed at some greater depth than our other two structures would allow. And so, this is the small working group in the human and social issues in the epidemic. Anyway, it's my pleasure to be able to be here and listen. I'm not a member of the small working group. And fT haven't been able to be at all of the meetings; but given that the University of Michigan closes down for the summer, I was able to come and be here. But I will from this point on be an interested listener. REV. ALLEN: Well, we hope it's more than that, June. And I would hope that we can all be on first name basis here instead of our titles. And before I introduce the Commissioners, I would like to share with you a little bit about why we have asked you to come here. The working group decided to deal with testing and early intervention. We have had a meeting in Boston, the first meeting dealing with the intervention issues. And we felt that we needed more input and input of your kind of input. So, we have brought together this meeting and looking at the intervention issues and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 through the prism of testing, but also the range of services, what's out there, what's needed, what do you see that's happening in the future and how can we present the issues to Congress. We have another meeting at the end of this month in September -- excuse me. In Seattle. It’s still in July. That's right. And in September, we will provide our final report hopefully to the Commission on the testing and early intervention issues and range of services along with the obstacles to those services. / | So, let me introduce the commissioners to you. I'll just go around the table and then we will introduce ourselves and our background. This is Eunice Diaz, and she is from Southern California, is Adjunct Professor at USC and has worked extensively with the individual organizations out in LA and has worked all over the country. So, the Commissioner Diaz which we will go ahead and start with Eunice. Larry Kessler is the Executive Director of AIDS Action Council of Boston and has been there for years upon years and is well-versed in the community-based issues. Harlon Dalton -- Warlon raise your ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 hand. There you go -- is the Professor of Law at Yale University, has edited the book “AIDS and the Law”. Let's see down and around. Don Goldman is the past president of the Hemophilia Society, National Hemophilia Society and in private law practice in New Jersey. And Charles Konigsberg is the State Health Director for Kansas and formerly the health director for Boward County in Florida and is well versed in the beginnings of this epidemic and what the public health response has been and is. So, now, let’s go around and just introduce ourselves. Maureen I think we know. DR. BOWEN: Steve Bowen from the Center for Prevention Services at CDC. DR. MaclLEAN: Bob MacLean at Texas Department of Health, Austin. MR. WOLF: Hi. I'm Fred Wolf, President of Colorado State Health Department. DR. DYER: I'm John Dyer from the Offices of Assistant Secretary of Health Regional Office in Dallas. DR. FRANCIS: I'm Don Francis, CDC Regional AIDS Advisor from San Francisco. DR. GREEN: I’m Gordon Green with ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 the Dallas County Health Department. | MR. WILSON: Jane Wilson. I’m the AIDS Prevention Coordinator for the State of New Mexico. DR. McNULTY: I'm Chris McNulty. I'm in private practice and a physician at the Nelson-Tebedo Clinic here in Dallas. MR. SCHMIDT: I'm Don Schmidt. I serve on the board in the Policy Committee of the AIDS Action Council in Washington. I live in New Mexico. I'm a long-term survivor living with AIDS. DR. PINTZ: Fred Pintz. I’m Public Health Service Regional Office here in Dallas, DR. GUERRA: Fernando Guerra, Director of Health for the San Antonio Health District. MR. PANZER: Tim Panzer with the Valley AIDS Council in Harlingen. MR. KELLER: I'm Bob Keller. I'm the Progran Director for the STD/HIV Progran, Metropolitan Health Department. DR. LEVINE: I'm Ron Levine. I'm the State Health Director for North Carolina. DR. MASTERS: Henry Masters, ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 Medical Director for the AIDS and STD Program in the State of Arkansas and also serving as Assistant Director for our State Tuberculosis Program. DR. MCFARLAND: I'm Louise McFarland, State Epidemiologist from Louisiana. Also private director of the AIDS progran. DR. HARKESS: I'm John Harkess. I'm the Assistant State Epidemiologist in Oklahoma. DR. ANDERSON: I'm Ron Anderson, President and CEO of Parkland. DR. LOVE: I’m Nancy Love. REV. ALLEN: I would like to say that there will be time for comments from the public from one thirty to two o’clock this afternoon, and we want to hear from you on the commission. And we also have formal testimony tomorrow at the Dallas Public Library. And there too, we will have an opportunity for public comments. Now, let me mention that Nancy is here to help facilitate this meeting. And I'll let Nancy just do her thing here to get us going. So, Nancy. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 DR. LOVE: Okay. Thank you. I do mention that the schedule of this meeting is to get as much work out of themselves as possible. I think part of the truth is they scheduled this meeting to get as much work out of you as possible in the short length of time we're going to have this morning. In looking at the previous testimony, we've come up with several questions. I presume you have them in front of you. They do not. Well, the first one while someone perhaps is looking for those or -- there are five. The first focus I think we need to work with is a working definition of public health. So, perhaps we could have some views on when we're talking about public health, what this means to different members here. Somebody talk about what the role is, what that encompasses. DR. McFARLAND: The role of public health in the AIDS epidemic? DR. LOVE: Uh-huh. Or when you say public health. DR. MCFARLAND: What do we mean by public health? | DR. LOVE: What are we talking ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 DR. MCFARLAND: I think for the most part it means(disease prevention When you, think of public health, you think of prevention. Certainly surveillance of disease comes in there. DR. GREEN: One of the things that our colleagues at the Institute of Medicine did when they wrote that report on the future of T6M A fir tr little bit the ny public health was to eens difference between public health and publicly can, ee funded health care., ~~. In an otherwise excellent report, there was allowed to be -- probably as a result of the “” fact that it was a corgensus document, there was allowed to be a certain amount of laxity in the definition of public health. And publicly funded > health care became an important component of the book. I think that has allowed us -- the rest of us and it began long before the book came out too to fall into that assumption that much of what is done by public health agencies is, in fact, publicly funded health care. But the difference is different in terms of mission. | Where public health is directed at ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 spe populations, has an emphasis on prevention and seeks to arrive at the common good, publicly funded health care is directed at sick or injured people who have a problem which is identified as a health care -- as a health problem. And the interventions are directed at the individual's problem whether it be AIDS or heart disease or whatever. One of the things that we've had problems with is coping with the terminology and it's led us to create some administrative structures which don’t help because publicly oman a funded health care, there is such tremendous = — wena demands for that, that it tends to parasitize public health operations. DR. FRANCIS: I think it's easy to EAN |S at least categorize with HIV disease and g | . pOwory / oo . Serpe transmission to look at prevention. “The public f health responsibilities in prevention dealing with cpramary evention; that is, prevention of ee nn transmission to uninfected individuals. And = Secsndary preventjon; that is, the prevention of Pe . es disease occurrence in those already infected. I think those two merge with the concept _ of early intervention. The aspects of evaluation ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 13 that Louise bought up -- I think surveillance is the whole evaluation of the progress, is the counting of cases or counting of infection -- rates of infection are clearly cut that ina adifferent way. DR. LOVE: All right. DR. KONIGSBERG: A couple of points and perhaps Dr. Levine from North Carolina will know whether I'm stealing this phrase from the School of Public Health defines public —Z= health as the diagnosis and treatment of its patient. Ana by patient, he meant the community which gets to Dr. Green's point about population based viewpoint which I think is really terribly important. I don't totally agree that the IOM Report bought that heavily into public health’s role in the care of the sick. As a matter of Fact, I think there are a number of us who thought they kind of skirted that issue and that may be appropriate. MS. WILSON: I think though that what I'm hearing is a very small focus on late dean of the School of Public Health, pelle Deceh. University of North Carolina. Vomacacd, a ya fred ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 identification and control of disease. And I think we really have to look at this as a much broader issue. The identification and control of disease does not talk about prevention, education and those kinds of things that we get into when we talk about chronic diseases, when we talk about noninfectious behavioral diseases and when we talk about AIDS also. So, I think we have to expand that concept of public health coming from a public health department that does an awful lot of prevention, health promotion kinds of things. I think that that is a much broader area than what I'm hearing some of these comments. DR. GUERRA: I think all of that and then the additional consideration that public health is as I think we know it is really very much of an outdated and very restricted component within the overall health care systen. | And that until we can expand our thinking and get away from that restricted, very preventive orientation and intervention and epidemiological techniques which are tremendously important and will always be very important. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 © 1 But I think bringing it closer into the 2] mainstream of the community that establishes some 3 | very clearly defined linkages with a treatment 4 | system and one that encompasses especially within 5 | the context of the AIDS epidemic, those extremely 6 | important new challeges and opportunities for 7 | offering the broad base kinds of interventions and 8 | support and counseling and dealing with the myriad 9 | of needs that exist in communities, I think it’s 10 | going to be very difficult for us to catch up. 11 And I think that the other thing that @ 12 happens is that it's very difficult to establish 13 | the support from a constituency in a community 14 that one needs to affect the kind of change in 15 | thinking of the policy makers and elected public 16 | officials and those that can hopefully enhance and 17 | increase the resources that we need. 18 DR. LEVINE: I feel although with 19 the boundaries of public health fuzzy. The 20 emphasis has been on prevention and on 21 community-based solutions. “the health of 22 | populations, premature babies and minorities, 23 | whatever. @ 24 However, there's a couple of other 25 concepts that these deserve some consideration or ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 roles. One, of course, is Kavocacd) Public | health can play an organized -- family public net health can and should play an important advocacy es role even when it is not directly involved in _ various health programs. And another is a concept of Dr. Arden Miller; and that is the role of\residug@d guarantoy so to speak, that when a service cannot, is not being provided by any other segment of the health care field and yet is essentially public heaith as ‘a governmentally placed entity throughout, the nation or state has some responsibilities to advocate and even intervene and provide those services. So, in addition to the traditional community-based population-based responsibilities, I think there are some residual] roles for public health. DR. KONIGSBERG: I have thought for a good while that it's very difficult to separate the treatment or curity of care system from the public health systen. That’s probably a area where I do differ a bit from the IOM Report. The lines of prevention and quote © Se treatment are blurring in the private sector and ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 they’re also doing so in the public sector. And I think that's a very important point of discussion in terms of concepts, early intervention where HIV Fits into the public health system. I'd like to mention three major functions of public health that were identified by the IOM Report on the Study of Public Wealth. The first one being/fassessment) which we'll hear a good bit more about in e September session on public health which includes surveillance in epidemiology’. The second one veing Goiicy ) d@velopment. And the third one being assurance. . Z —— And the assurance as I see it relates not only to intervention of disease, but making sure that care is provided. And I think the point was made earlier, it does not mean that public health was the one running the clinics or running the system, but somebody has got to take an overall viewpoint about the health of the community and a well-organized health department with good leadership and good vision -- and that’s a lot of if’'s and I understand that -- is often in a good position to do that. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 .21 22 23 24 25 18 So, it is a much broader function than what is traditionally thought to be public health. Not all of our colleagues would agree that that includes a direct role in or Qt on of medical care. That tends to continue to bea point of debate. What shouldn't be a point of debate is the role of assurance in seeing that it’s done. DR. ANDERSON: As past chairman of the Texas Board of Health, I got involved in the public health issues and understand somewhat the delineation of the responsibilities and who can carry them out. I think that it's going to be even more blurred, the distinction between public health and primary care particularly as we start seeing early intervention become successful. So, surveillance is surveillance for epidemiological purposes, but it's early intervention. And that being the case, you'd have good linkages. And I think the key issue here in Dallas is we got to work very closely with our public health department. And I think that's really going to be encumbent of public hospitals around this country to do so. - ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 19 Io visited many places where they are islands unto themselves, and that's something we can’t afford in this country at all. I also would say the problem with medicine in general is the practice of preventive medicine and health promotion nearly as much as it should. There is a model out there that community-oriented primary care model where you deal with individual patients in primary care, but also populations where you looking out for information. And I would suggest that there are ways of looking through then. Another IOM report where perhaps there is a blend of public health and primary care, there is a natural partnership. I would echo what Dr. Green mentioned though in that many times public health is parasitized. If you compete in the public health budget and the Parkland budget and you got the . chronic to deal with and you got the AIDS patient; to deal with, not the HIV, asymptomatic patient, always, always the hospital wins in the budget. battle. And I think it’s very important that we have dedicated monies in public health and that they not be cannibalized at times because of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 20 needs. It's very, very, very important to get ahead of the power curve; but I think there are models that exist. And a lot of the problems I see in public health is that cities don't work with counties, don't work with public health hospitals, etc., and state health departments. I mean we're all in our own little territories here. And those days have to go away. Whether or not it's blurred or not, it probably always will get more blurred. And that means we’re just going to have to sit down and find roles and responsibilities so we don't waste the source. DR. DYER: I think it’s possible to think of public health without getting into a division between the provision of health care and Management of health care. To think of it asa body of human expertise which starts with ‘excellent clinical medicine which is integrated then with epidemiology and with behavioral > science. And if you integrate all three of those and you look at what goes on particularly with regard to this epidemic, you would have to say ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS £(214)520-3090 that public health is rarely seen because we have things that are in the scientific medical base now which we are not doing. We are I think fairly good at the epidemiology insofar as our democratic principles allow us to do so with the rights of the individual in the privates and so on. But I think we have done rather poorly © at integrating some of the behavioral science part of public health particularly with regard to values, particularly with regard to attitudes and with what I would -- I think has been labeled the hierarchy of needs of individuals in the population in integrating what we really already know about that with our practice of medicine and with the epidemiology which we've done so well. And that it's possible to look at public health in that way and then to come down from that and to think in terms of the function of public health which had been alluded to and which are in the report and to evaluate where we are in this epidemic that way. DR. PINTZ: I think there's three important contrasts to be aware of. Public health deals with community's medicine, deals with ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 22 individuals. Public health operates in community’s medicine, typically operates in Facilities, in an office, in a hospital. And I think most importantly though ae =. public health reaches out; it seeks. It attempts nee cere to identify groups with risk factors using epidemiological methods while medicine operates or Ween a medicine waits for individuals to come to it. The physician waits in an office. The patient comes to the physician. In public health, we go out and find individuals to work with. I think those are three important contrasts to remember. DR. FRANCIS: I think if I can expand on what Charlie Konigsberg was saying as far as responsibility of public health. Since public health is primarily a government entity at least the organizational structure of it is even though it goes all the way down to the private institutions in terms of preparing a program, that there is a responsibility of public health to really as Bill otk, woura say to mention what is unacceptable. Unacceptable risk, unacceptable treatment, the like. And that when you're dealing with an ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 epidemic of an infectious disease which is very traditionally in public health where the Government has a responsibility and where it doesn't and certainly, where it does, where the Government must come forth to take care of disasters, natural disasters, public health disasters, the like is our responsibility in public health even when the current mood of the country is that we don’t want government around by and large. | That our responsibility here is to say there are roles for government and if we're going to prevent in a prevention sense the eroding of the can-do American spirit, that we better get out and do something about major problems so that the next problem that comes along, we feel a lot better about ourselves and can conquer that one as hopefully ably as we can this one. MR. SCHMIDT: I think public health or public health providers are who those many folks who cannot access private health have to rely on.» And so, I think there's been a lot of change as it relates to the HIV epidemic in terms of many, many more folks having to try to push those who are public health people into the aS ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 24 ‘treatment arena. We have no choice. And what we’ve had to do is spea -- and what’s offered in terms of public health service provision from my perspective from community to community and within a state, let alone throughout this country, is very, very different from one place to another. And I think we're still seeing it > evolving in terms of public health role in the treatment arena. And I think we're going to see a whole lot more of it with degrading of America, with the increase of people in this -- with these long-term needs and with the increase of others with long-term needs. And I think discussing this is real important; but right now, I see why you're -- the Commission -- the concensus statement that came out was fuzzy because I think it's very, very different from town to town. DR. MCFARLAND: Someone earlier mentioned advocacy. And I think for a number of years, we sort of got away from working with the general community. We just went to our clinics. We took care of our babies, our mothers or whatever. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 But I think the HIV epidemic has sort of brought advocacy back into play which I think is ery good because it involves the total ee community. Pe Also one of the things I think we away from in public health sometimes is the management idea concept. And I think we've certainly seen that resurgence there with the HIV epidemic. And for many reasons, this is something that is very good and needs to be looked at again and something that’s important in any disease whether it be chronic or acute infection. But I think that we're getting these back into the picture. DR. GUERRA: I think that there is that fuzziness and perhaps some ambivalence, but I think it's more because of our own discomfort and insecurity. I think we've settled too much into the roles of administrators and which been maybe too detached from the more clinical type of setting which I think again in the context of the AIDS epidemic is a tremendously important relationship and linkage that must be established. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 And we're still very uncomfortable. It's a new role for the traditional public health professionals. And I think that except for those that perhaps are a little more closely integrated into a model of clinical care which I think are really very much the exceptions because the clinical situations that have been a part of traditional public health which been those that one gets very comfortable with whether it's STD or tuberculosis or prenatal care, outpatient, etc. And there really isn’t anything that we have faced previously that is so encompassing of so many other conditions and needs and demands as the AIDS epidemic I think has perhaps introduced us to. DR. LOVE: Other comments on this? MR. GOLDMAN: I guess it’s more of a question than it is an answer; but from what I'n hearing and listening to, it seems to me ae ange ; 4 there is a necessary balance and perhaps even by tension between the different kind of areas y involving dealing with the population on one han sand individuals on the other hand. eee ed And that it is the healthy management of that tension which delineated where the systems ELLIOTT & BROWNLOW INC. DALLAS TEXAS 214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 27 are working well and where the systems are working not because you can't deal with population, you can't do outreach if you don't have facilities available to those whom you're outreaching. And that has to do with whether or not you're dealing with HIV or mammographies or pap smears or any other kind of things. If you don't have the facilities to care for the people, you can’t outreach to then. On the other hand, if all of your resources are spent dealing with care and you don't have any community-based kinds of prevention and population directed activities, then the system suffers. And there's a healthy tension between the two. And I don't know whether we can -- whether or not you can necessarily say that one is more important than the other. It’s a question of keeping them in a pair of balance. I sort of -- that’s what I sort of hear. And I don't know whether that’s right. DR. KONIGSBERG: Let me at the risk of sounding a bit of a pessimistic note, the flip sive of the Institute of Medicine Report on the Study of Public Health -- and those who have read ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 28 it know what I'm talking about -- described this -On's public health system as being in 7 , ‘disarray. a lot of people in public health are uncomfortable with that phrase. Some of us are perhaps less uncomfortable with it. I think it depends on where you look. But there was a good deal of discussion in that report about the infrastructure about the public health system and they were concentrating on state and local health departments primarily as opposed to the public hospitals, although I'm sure that a lot of those same comments would apply. And I think that I made the comment in other settings that the Commission hopefully in the September session needs to look at the public health system the same way they have been looking with a critical but hopeful eye at the medical care system. There are bright spots in both, and there are difficulties in both. But I think it's been alluded to earlier that many times public health gets left out in the funding issue. And if any of you have tried to be an advocate without a whole lot behind it sometimes in a political ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 system, that gets to be very difficult. Many times we're trying to get others to do what we know we truly can't do ourselves. But I think we need to keep in mind that the system itself in this country for public health is just terribly -- it's deemed terribly important by others and needs to be addressed. DR. LOVE: Want to add anymore to this already broad definition? MR. KELLER: The only thing I was going to mention and that's sort of in the same line as Mr. Schmidt said was that many times the role in public health especially in something like our community is sort of enforced. The community as a whole chose to decide that this issue resembled similar to the STD issues and since public health has always played a traditional in not only STD prevention but STD management, that it was much easier for them to assume this role also in HIV management, and it was also more economic for them. MR. PANZER: Coming from a community-based organization, it was my tendency when I found out that this was going to be one of the topics, kind of do a quick and dirty poll of. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 people that are providing care or working in prevention. | ‘ Cc C And so, I talked with people from Passe different organizations to find out what was “a definition of public health. And our local community health centep said that's us. We provide care to people who -- primary health care to people who can’t afford it, who can't afford it in the private sector. But an official from a local health department said public health is prevention and diagnosis and we stop there. And then we send the person to somebody else for primary care. So, that’s where public health stops. And then health educators told me public health is us. Public health is health promotion and supporting people in the move to make risk reduction, behavior changes and those kinds of things. So, public health has a different definition-to different providers. | And so, I talked to people with AIDS that we-work with. And to people with AIDS, © public health are the people that we turn to When we run out of money. an DR. GUERRA: Well, I think the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 other aspect of that is that it essentially has been in the system as I think it was mentioned earlier that it takes care of the poor people, the disenfranchised, those who are not so sophisticated, those who sort of have ownership of whatever problem that affects communities. And so, public health has had an easy task; and I think it's been easy. And we haven'’t really had to be so accountable today as we deal with some tremendously complex, social, demographic, economic kinds of conditions that cut across a lot of different sectors of the community. We have to obviously expand, you know, from what is a very traditional approach and role to a much broader one because we're more closely linked to the mainstream. MS. WILSON: I think that what Timothy is pointing out is just a good example of how we are looking at how we fit into this whole continuum of services that we provide to people. And we've sort of gone from the standard what I would call STD model of identifying and controlling the disease, and we've moved on both ends of the spectrun. We have gone towards the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 32 primary care. We've gone towards the referrals and resources that we need to develop in the community to try to get people into the treatment centers. We’ve also gone to the left -- what I call the left-hand of the spectrum which is the health promotion, the prevention and that area. So, we've gotten into the I use ! my health educators as’gorillas‘and community —_ activists. You know, I try to get them on that end. | And so, I see us sort of moving in both directions, moving our definition in both directions along what is truly a continuum of care for a population. And I think that's where we need to sort of place ourselves. DR. LOVE: At this time, let me ask you to think for a moment of any issues left out of that definition and then we're going to move on and talk about it more specific. DR. FRANCIS: I think I'd like to work on that as far as the definition because I think it’s very easy to get confused the actual roles necessary and responsibility for those roles and the financing of those roles versus what is ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 necessary for the individual. I think it's useful for this group to think about the individual in the community on the public health responsibility and chart out those roles and those necessities and then not get involved until the financing and the responsibilities of those until after. Then each area actually is going to end up different depending on what the setup or the individual structure is. But it’s financial structure versus roles and responsibility of individuals providing the preventive be it primary or secondary prevention not to mention surveillance and the like that's out there. DR. LOVE: Any other broad areas we want to add to the already broad definition? DR. PINTZ: Yeah. I think there's one other point is that public health is not -- does not belong to public health professionals, but people can -- the community can be involved in public health and can provide for its own public health. I think it’s important to recognize particularly with HIV disease the important public ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 a“ health contributions that community groups are ee making, you know, quite separate and distinct from - carseat state, county, local government, other entities or _ . what not. ae MS. DIAZ: I think one thing that perhaps has not been emphasized enough is that we are battling years of set patterns of use of different health care systems including the public health system in this country. I’m thinking of especially minority individuals or individuals from poverty communities or those that perhaps come from other countries. Their traditional use of public health woop -_-_-e - ai eens ™_— 2 systems has been in times of epi cs, emergencies and disasters, vaccination control, 2 malaria, eradication. - This type of more traditional usage that a population may give to a system really determines what kind of flexibility can be found within that system. But I would dare say that within this country now, those populations which been exposed to some model of care where there is active integration of prevention, surveillance and good public health practice putting in an environment ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 of good medical care or at least accessible medical care let's say in terms of what is being provided or should be provided to migrant workers. oD Those types of primary care centers that are community-based, the 330 funding, community health centers, and other types of models that are trying to increase access. I'm thinking of a lot of things that are federally funded for individuals who have no other health care Cnc een, resources. — ee, my point is that the perception that the population has on not only the individual can begin to push those systems for change. And the kind of models of public health practice, good public health practice may vary around this country depending on the groups that are primarily accessing those systems not only for prevention, education, health promotion, but in addition those essential elements of health care. DR. LOVE: Any others? MR. WOLF: I think that it’s important to remember that the Government exists for a purpose. Like Don's statement that public health is primarily governmental at least in the ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 36 provision of services or was before the onset of the HIV epidemic. People in a community occasionally recognize that there is a health problem visited upon that community and they have an expectation that a public health department or the public health system per se will if not eliminate that problem will attenuate that problem. Now, how the public health system goes about responding to that request or demand by the community I think differs greatly from problem to problem. We've heard some examples of chronic disease, some examples of classic infectious disease. But what it does mostly from its perspective of community is to facilitate the attenuation of problems. In one situation, a public health agency might provide direct services to people. In another, they might outreach to people at greater need for a variety of services. In others, it may motivate or stimulate the provision of services by the private or the public sector. But I think again it's that concept of community expectation and at least one coordinating agency to facilitate some kind of a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 response that we should advocate. DR. KONIGSBERG: I'd like to pick up on Fred's point. It's called organizing the community. I think our best work in public health. is often done through others. It's best done as public private partnerships. And this is not confined to the HIV epidemic. I think that there's a long tradition of this. And I think what it takes on the part of public health leadership is a quote ownership of an issue. And the ownership sometimes gets confused with control. Sometimes maybe some of us confuse it with that; but to me, it's more of a leadership. Just, for example, in my state now in addition to the HIV issue, I think our state public health agency is taking a stronger ownership if you will in dealing with the problems of health care to the medically underserved seeing it again as part of an overall public health strategy. That does not mean that we're going to go out and propose multimillion dollar clinics run directly by public health. That can be -- that's a different role for us in our state but is one ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 that's not unusual in some other places. But I think it’s leadership and Ownership in organizing communities are critical elements in a good public health program. DR. MASTERS: I think we must realize that in order to carry out and perform our traditional epidemiologic functions and Surveillance activities for disease, infectious diseases in particular, the provision of services is extremely important. In Arkansas, we have very clearly and convincing evidence, for example, that in terms of AIDS case surveillance reporting, that the provision of counseling and testing services in counties is extremely important whether we get an AIDS case reported to us. We still have a few counties in Arkansas where there are no counseling and testing sites that are run by our public health departments. And in those counties, we don't get the statistical association between whether we get an AIDS case reported and whether we actually have site performance testing services. With the availability on a limited basis of AZT through our health departments, we have ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 found another incremental increase in AIDS surveillance case reporting by the physicians now that we have a carrot to attract people and _—_—— ag physicians to report cases. I think it's extremely important that some services be provided in order for us to doa better job at surveillance and some of those traditional aspects of our work. DR. LOVE: I think I would probably be in error if I did not give public health the last word in working on the definition. Is there somebody from public health who wants the last word before we move on? I think we need to look now at what public health's role is in the AIDS, HIV epidemic. Since I know we've clarified or mentioned exactly what we mean by public health when we use it. DR. KONIGSBERG: If I May ask is it a concensus -- you’re the facilitator, but is it a concensus that that definition is a broad one? I mean I think that’s kind of a critical point. That's why it's vague. Anything that's broad is also vague. DR. LOVE: That's right. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 MR. DALTON: I'm not sure if I agree with that, but I don't know if it's. important to go into that. DR. KONIGSBERG: You don’t agree that it's a -- MR. DALTON: I'm not sure there was a definition. I thought it was a very useful exercise. DR. KONIGSBERG: There wasn't a definition that I saw anybody write down. I agree. DR. LOVE: There was I think a lot of comments. MR. DALTON: I don't mean this as a putdown. I thought it was very useful, but I think that, Charlie, you mentioned ownership of the issue. And I’m putting together with Tim Panzer's comments that we see a lot of different actors here owning various issues. And that’s probably a good thing. he question is how to put ee ee ee them together and have then operate iy———___. ee cooperation. Lanta nesta eee - But it seems to me that public health is ‘Wenennennee: a label that people also want to own because good x —_ things flow from that. Vv ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 41 As an attorney, I know that if I make an argument in terms of public health as against in terms of individual rights, I'm much more likely to be successful. So, it’s a useful kind of phrase that lots of folks want to lay claim to. And I think people want to own the money, what little money there is. Maybe there’s not a lot out there to be owned. But own the money that flows from irrigating to oneself. And I mean this ina descriptive way the label of being the protectors of having the public as one patient, the community itself. And I didn't hear it so much as a definition as a really quite wonderful and rich discussion of the kinds of interactions and the kinds of actors and the system in their act all of whom claim quite rightly as part of the public health enterprise. DR. KONIGSBERG: I think we're on the same level. DR. LEVINE: I think one of the problems is you’re trying to combine into the one definition the public health structure and the practice of public health. The public health ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 42 family of structure is practicing beyond public health. In some instances, they're operating in doctor's offices at the wing of the building. Okay. So, that the public health structure has a core responsibility, a mission, but may indeed be providing other types of services. The practice of public health has already been pointed out is undertaken by others besides public health practitioners. DR. LOVE: We're saying very aqdifferent things. DR. MCFARLAND: I don’t think we should really try to set down a definition of public health. I don't think we could. I think that’s not important. I think we look at the aspect of what public health is all about. As it's been said many times, it extends out into the entire medical community. DR. HARKESS: I think establishing the consensus. I mean what the IOM report defines public health as what we as a society do collectively to insure a society in which people can be healthy. What we've said here is that those roles ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16¢ 17 18 19 20 21 22 23 24 25 43 are taken by many different parts of our system. And it's different from what public health -- it's not -- public health departments have only a part of a role in that. And exactly what role those different sectors take depends on what's going on in the community, what is available to the community. It's a local decision in a lot of ways for -- and it probably varies from over time depending on what the needs, demands, resources available are. DR. ANDERSON: You know, as I sit and listen being an acute care provider anda provider of large H clinics with a lot of chronic | Ckgraund to disease and having had public health some degree, I think it’s not schizophrenic. 5 wee / ; a Pe a - We're taiking about what society should do to protect the public health. We talked about social justice. We talked about public health knowledge, getting equal care. But going to hot spots and dealing with issues that are very important in epidemic. Whereas, we talk about health care of this country provide on equity basis when it's not. I don't think you can talk about health ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 care in the context of getting some primary care and forgetting about hospital services, access to health care for secondary interventions after surveillance has been successful. What you have is a system that’s broken and public health is trying to pick up a lot of the pieces. Where there is no public hospital Texas, AIDS patients don't get care. And in public hospitals where they're so busy -- you saw the lines this morning. People have to stand in line and they're sick. | There are access barriers everywhere, and I don't see how we can separate these things nor should we. I think you have to have a continuum of care and you have to tie them together and you have to be sure the public health works with the predictive care provider, the chronic care provider and the community. I really think ina way we're talking about public health. And, you know, it's like trying to put a rabbit in an elephant stew. ¢ You’re not going to do much with a rabbit in 7 meme elephant stew. ne eee And I think right now the big problems in this country is the access barriers to care. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 Once you find these people, -- we said go out and find them -- you get them in the care system. And here you do that in Dallas. To a degree, that's true. But a lot of times, you can't get people in the care systen. And there's nothing worse. We've seen it in hypertension and stroke prevention and everything else. Cancer surveillance. To go out and survey and find people and you can't get them into the system is cruel. It's a joke. And right now, I think that what public health -- and we're getting into the business of taking care of patients in their office. They're doing it because the system is failing. They're probably forced into that situation like they were with prenatal care and like they were with teenage pregnancy control. That wasn't fashioned with public health either. You got to do what your community needs. And I think a lot of this is simply people uncomfortable in this role of being a primary care provider, but there's nobody else to do it. As the gentleman said, they are living with AIDS. What are you going to do? Somebody's ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 46 got to take care of the patients. And I think that we probably are schizophrenic because you're also not dealing with the other side of the equation. Medicine. And iff public health is broke in this country, medicine is broke in this country as it deals with indigent care access. DR. FRANCIS: I agree, Ron, to an extent; but people are dying of many diseases. And they have lousy access all around the world including in the United States unfortunately. FOAMS gle But there's a stron tradition when ou've got a transmissible infectious agent that es there is a responsibility to the public health. Primary responsibility is to protect the EN Junintectea from getting infected. That is absolutely a strong structure. jE When the reality of doing that involves este taking care of infected people, we have adjusted in the past to that absolutely fine if it’s taking care of an STD or a better model taking care of chronic condition like tuberculosis. There are very strong public health models for that. Now, that doesn't mean that public health takes cares of all patients or should take ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 47 care of all the HIV-infected. The public health responsibility is to circle that individual with whatever is necessary to prevent transmission. If it’s tuberculosis, if it’s skin testing of contacts and treating with chemotherapeutic agents, if it's a vaccinatable disease, immunize the individuals around that. Or, if it's a behaviorally-transmitted infection, you immunize with that around the individual. Very strong tradition for that with various tools, but with the same model. HIV fits into that fine. What you’re really saying is the fact is this very wealthy country of ours is running away from all responsibilities be it health care or public health that the system is no longer there to do it. But let's go back to the primary job of public health for infectious disease, transmission. And let's say everyone else was dying of multiple other things. At least there is a tradition of taking that one because you can do something about it. DR. ANDERSON: I think the ee infrastructure has eroded. And I agree with you ~N manana ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 48 both in public health and in the care as well. The infrastructure in the inner city is housing, economic opportunity education in public health. I guess one of the things we probably need to think of a definition is the public health infrastructure. We had a retreat here recently on what the city and county responsibility was in public health. I was the chair of one subgroup task force. And one of the biggest things we came up is we need the business community, the political community, the lay community to understand that public health is part of the infrastructure, a much a part of the infrastructu Sing and aeuwthown——— roads and bridges and prisons and everything —— We've let it erode just as we let the a inner city erode in this country. And now all of a sudden, we have an epidemic to deal with. The public hospital system and the nonprofit hospitals that will work with this epidemic are full now. It’s overflowing. So, we've got to have a public health intervention out there to stop, you know, the epidemic if we possibly can because we're just ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 49 getting bathed and we can’t handle it. And I agree with you. It's probably multifaceted, but it seems like we're dealing with public health and you draw a boundary around it with your hands. It's hard for me to draw the boundary around individual patients or population of patients particularly on the issue of behavioral medicines. And I know June Osborn might speak to this, but most medical schools want to deal with the test tube issues subcellular physiology, things you win the Nobel Prizes for which is botor fine. (b+ JAA Nobody wants to talk about ponante ft _ sexuality. Nobody wants to talk about . Bees oo addictions. Nobody wants to talk about behaviora Se medicine. I see public health as an answer there — and a good laboratory for medical students. How many medical students are ever exposed, ever exposed to a public health situation amen, during their training? They may go to CDC if they're subselected and they really want to do it, but most of them don't ever see that part of medicine. And I guess that's why I think it's very hard to circumscribe it here like I do with ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 most specialists. DR. FRANICS: All I want to do is say that when there's a transmissible infectious agent, you cannot then discuss that as we hear more and more now as how this competes with other problems we have from roads to cardiovascular diseases and subsequent. This one gets worse if you ignore it, much worse and much bigger. It’s a very different situation with a transmissible agent than you have with others. I think we have to be very clear about that. If you ignore transmissible agents, they get worse. If you do something about it, they get better if you have some tools. DR. GUERRA: If I could just respond to a little bit of that. I guess that if one looks at what happened in the last couple of years with the continued outbreak has affected some of the large metropolitan areas in ways that are unbelieveable in terms of what is en available to prevent that. And so, I guess that somehow the public health system has not -- something is lacking to still get to the hard-to-reach individuals in communities. That hard-to-reach group of ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 individuals is out there someplace. And it's part of a much bigger system than what I guess public health is really allowed us to say grace over. And so, I think that, you know, in our thinking somehow we have to expand from what we've done in public health in a very traditional way in trying to encompass those conditions and see if we can put out some additional kinds of linkages and to those real hard-to-reach, the AIDS epidemic, the minorities, the poor, the disenfranchised, those that are not literate and sophisticated. We need to find them. DR. McNULTY: A lot of that is being done in this area at least not so much by the public health officials, but by the community-based organizations. Usually, the PWA's themselves have taken responsibility for that -- DR. LOVE: A little louder, DR. MCNULTY: Are taking responsibility for prevention of transmission and everything that goes along with it. That puts public health to a great extent on the HIV patients themselves and the community itself because it simply hasn't been answered. The ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 52 problem hasn't been answered by the public health officials. | yk, J pow DR. OSBORN: I think, Don, that I -=— might take a little issue with you about whether — we know how to contain even infectious diseases in _ the past public health structure. ee) — emma I think part of the problem with this discussion is what Ron keeps bringing up and that is that the systems are so broken that we would be better off harping back to things that which been imperfectly or poorly executed, And I think infectious diseases area very good example of that because the minute -- and we see it in this epidemic. The minute somebody says the word vaccine, everybody abandons thinking about anything else that has to do with society or public health. DR. FRANCIS: I agree; I agree. DR. OSBORN: And the measles epidemic is a particularly good example that I like to quote often now is education is the vaccine for the virus of AIDS. And we don't know how to use it because we have never done very well in infectious diseases unless there was a specific technologically-based intervention. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 And I think that we are better off to rephrase the -- and the reason this is fuzzy as has been pointed out is because there's no good working definition in this country to harken back to. We have a gerrymandered system of public health and everything. And I think we're wiser to be looking at a restructure that happens to involve an infectious agent now; but in a structure that will bear the weight of our elderly, that will bear the weight of chronic disease and other needs for which clearly are tertiary care system is not well Situated even in terms of literal structure witness the crowding here or in terms of long-term follow-through and sorts of things that by and large don't involve exceptionally costly hospital beds. As you know, I'm Dean of the School of Public Health. And at one point, there was some discussion at my university of perhaps subsuming us under an umbrella that would immediately have us cannibalized by the hospital and the medical school. And I offered the president of the university the choice that I said I'd be glad to discuss taking the medical school under the School ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 of Health. I think that we've got things backwards and we must be very careful not to go back to old assumptions or else we're wasting the opportunity for this kind of discussion. DR. FRANCIS: I agree a hundred DR. KONIGSBERG: To pick up on the measles outbreak, I think it’s really impacted in the wilds of the plains of Kansas right now. If you look at our response to measles -- and this gets back to the point about is the public health system in trouble in some cases. And I think measles is a good example. By 1978, we almost had measles under control. We had an excellent vaccine and we had a public health system that included a strong response from the private sector. I know because my wife was working on that with the private organizations in town working to concert the public health. We didn't get into any arguments over it. We almost eradicated measles nationally. The response that we see and at least —Se ~~ in part to CDC and from the Congress is well, let's throw money into a second shot which implies ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 55 vaccine failure when, in fact, it's failure to public health systems by and large. And Don may or may not agree on that. That didn't stop him from advocating for the second shot money from our legislature you understand because you see other opportunities with it. But I think we ought to really look at what happened with measles and say well, that may be minor compared to HIV; but it's a symptom. And I think June's got a point there. DR. OSBORN: You can take another example just to drive that point home. One of the departments in my School of Public Health and one that we've touched on only from time to time in this discussion is the department called Health Behavior and Health Education which no one would think of havin j medical school and yet which is probably the center point of everything that re physicians are trying to do. ee I think it would be hard to find a lot of physicians who were aware of the data that shows. that compliance with the simple prescription for a ten day course of penicillin to prevent na a rheumatic fever as_a_two-fold strep throat is less Pe — ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 56 And yet, we talk lively about putting people who feel well on an expensive drug over the next indefinite interval of their lives in order to prevent a disease that they haven't been educated well about because we haven't provided counselors. That's exactly how backwards we have gotten to be. And yet, if you said compliance to most physicians, they would not even understand what you were talking about much less know the literature behind it that suggests that the way things which been going, we have a far worse situation with therapeutics than we do with vaccines. So, when I say I think we have to accept that fuzziness and look at starting over using the epidemic as an engine to drive us to rethink some of these things, I mean it both medically as well as in terms of public health. And that distinction I find particularly troublesome. Medicine is what you do if you have failed in health and preventive activities. Then | than fifty percent. Less than fifty percent 06 Ten ~ Tae a 7 . the people achieve that ten day interval of 4 HOHE therapy. —_— ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 57 you have to go into an intervention which is almost invariably far more expensive. DR. LOVE: Let's begin to focus on the second question which is what is public health's role in the HIV. DR. PINTZ: Could you clarify that? I mean, you know, we still have the same problem. Are you talking about what is the role of governmental agencies or are you talking about what is the role of, you know, entities or -- because I think there's a difference between public health systems particularly state, county, local systems and public health. The systems may be in disarray. Public health as a discipline I think is working marvelously. There's not a problem with public health as a discipline. There may be a problem with the way health services are organized and provided. So, I guess the -- DR. Th With reality. DR. PINTZ: -- point of all that is when we say public health, you know, without distinguishing between the discipline or the organization of services, it leaves me confused. And I need to know what you're -- you know, which ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 one you want to focus on. MR. DALTON: I have a slightly different problem. The Commission as a whole is going to spend a couple of days in the not too distant future discussing I think this question. And so, I'm -- I don't want to tell you how to run this show, but I’m sort of curious about where we're headed and at what point we’re going to get to it. REV. ALLEN: Why don't we share all of the questions? | DR. LOVE: I'm sorry. I thought you had then. The third question is what's the role of a nonconfidential testing. The fourth question is counseling and testing leads to behavior of pre-test and post-test counseling. And then the fifth question is what's early intervention. MR. SCHMIDT: I would really -- I would like to recommend that this second question we hold until later after some of that other discussion. I think that will help us clarify what public health is and is not doing. REV. ALLEN: I think my preference would be to move on to what is early intervention ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 since we've talked about this and then move on to other categories. DR. LOVE: You want to speak. DR. FRANCIS: Maybe I can drive ~——— the whole system. I view the public health role in the HIV epidemic I think about it as a pyramid of the population as a whole. Population divided into two major groups: A large group of the population really having minimal risk of HIV infection and disease at least at this period of time. The transitional group in the middle of students by and large and then a group whose behavior or medical requirements put them at risk of infection. And there's various roles of each stage of this, but I think if I can zero up to the top of that pyramid. If you go to the very top, there’s a group that's having behaviors or medical genes that put them at risk or occupational needs and then some of those are already infected and some of them are not infected. If I view early intervention, it's really the very top of that, the group that is already infected and their immediate contacts to prevent transmission. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 That is zeroing our public health strategy from this large, huge population that needs information and needs motivation, that needs skills no doubt and for many things of which we can use AIDS as an example, the schools, groups. Clearly, that's moving from one group to the next. But then when you get up to the top if you had to prioritize, it would be in my concept -- directing your programs to and around HIV-infectious people for primary prevention of transmission to the infected individuals and their at risk contacts be they drug users or sexual contacts. And for secondary prevention, actually preventing disease occurrence in your HIV-infected people. So, through all your programs of testing that you were going to lead up to, you identified a group of HIV-infected individuals. We've done that to a large extent at least in California. There's an awful lot of infected people who have been identified through both confidential and anonymous testing. What's happening now is we're failing to —_— i 4 take that opportunity in public health both for naeaaRa a ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 primary prevention of preventing transmission to their contacts and for secondary prev i Saying Ce well, now that you're infected, hasta luego. We eee Te got to go out and do our general population Fo cease, ata ae _— neclTrasesasat education because we don't have enough funds for SN a, that. Neste” And the thought here is with early intervention, you zero your program much more intensively, much more expensively in and around infected individuals, with all concern that the en enna nce medical aspect of this could eat up all of the a (Steep preventive aspects which is to me dangerous. nena REV. ALLEN: Before we go further, I think it would be helpful of the Commission to hear your definition of early intervention because we're not talking just medical intervention, but the psychosocial. And so, let's get a clear understanding as to the human and social issues and working group. We are dealing rather intensively with the social structures and intervention point and so forth. So, it's not just medical. And I was hoping we could extend that to what's out in the community, what do you in public health encounter in not only medical, but also ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 psychosocially. So, if we could get a definition of what that is, that would be very helpful. DR. LOVE: Anybody? DR. FRANCIS: At least in our early intervention programs, we talk about four roles, —_———— Medical, the immunologic medical follow-up of individuals; medical intervention when required; behavioral. That is, dealing with the that will increase transmission or increase aqdisease occurrence in the individual. ee ‘Psychosocial, he support for the individual including both practical and psychological support so they can adjust to their condition. And then take responsibility for others and themselves. And then the logistical case management issues of getting the person where they should be at certain times to make sure that they have all of the other pieces all tied together. You can spread those out in different ways, but at least those are the roles that we describe and they can be done by four people or two people doing various ones or however it may be organized locally with various different skills. And there's different needs early on in infection versus late in the disease. I think those roles ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 ~ 13 14 15 16 17 18 19 20 21 22 23 24 25 are at least a way to discuss how you organize your program. DR. BOWEN: Just to expand a bit on what Don said and to give an example -- a practical example about that. CDC and Health Resources and Services Administration which been working on -- for the last year or year anda half, we have been trying to pioneer a community health center based early intervention model ina minority community, high serea’ prevalence ina minority community. And there's a couple of things I'd just like to emphasize that would kind of supplement what Don just said. I think the community-based nature of it whereas the people that are running the program have ownership, they are the ones that feel their community is at risk and a threat. And it's the populations that live in their neighborhoods and their own sons and daughters that drives them to succeed at this. The other is the fact that it appears that both the clinical care and the prevention aspect when put together at one place ina community, both of them function much more effectively and with much more community consensus ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 that this is what ought to be done. If care is provided, then counseling and testing and active family involvement in risk reduction works better. If prevention is provided, then more individuals who are at risk either because of their drug use behavior or sexual behavior or their -- those individuals be identified in a much more efficient manner. And many of them may not know their own risk. They may not know the risk behavior of their partners. But the clinical care allows way of providing that preventive medicine and preventive both primary and secondary transmission aspect in a much more ~-- a way which is acceptable to the community. Acceptance of counseling and testing is much more easily achieved. And then the clinical care itself is much better done because the case Managers and the clinical staff have ongoing responsibilities and ongoing contact with these people who will then understand what is being attempted to be achieved for their own care. These are a couple of things just to add to what Don's talking about. But it can be achieved very well in minority communities. It ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 65 doesn’t just have to be in a community such as San Francisco where traditionally this has been organized in and around community organizations that have addressed perhaps well-educated white men. MR. SCHMIDT: I really like Don's definition of early intervention in terms of it | being multicomponent in dealing with the whole person. I have problems with use of the terms early intervention for anything other than hopefully preventive efforts to keep people from getting this virus. Once a person is a person with HIV and knows that and has some understanding of their immune function, I have a problem with us as a society talking about treating those people's multiple needs as somehow early. I really think in terms of a continuum of care for people with HIV. We are along that whole continuum talking about counseling, emotional support, practical support, assistance in activities in daily living for those that need that to stay out of hospitals. And I really think we're talking about client centered care planning ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 66 for all people anywhere along the continuum of HIV. | | Jpeg | a And I would somehow hope that as a pw community we make it clear that it's -- there's pro kind of an attitude that if people are sick now, physically sick now, we somehow have to do something. And we kind of are asking if it’s as long as people look and feel pretty good, they're not sick now. And it's important that we do quote unguote early intervention for those who can hol off onset of illness, but it's not quite as a important as meeting the needs of those of us who a are more sick and having more physical things eee going on. And I think that's wrong headed in Se terms of what public health ought to be all as, about. $$ MR. DALTON: Don, I hear what you're saying. And I think it’s a wonderful way to talk about it and makes a point that you wanted to make. But obviously, you’re heading into the face of a term early intervention that's out there with a whole different meaning. MR. SCHMIDT: Right. MR. DALTON: Nevertheless, I think ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 you ought to keep making that point. But I say that because it seems to me that from what I hear, the talk that I hear about early intervention around the country tends to suggest that it is focusing on trying to find those people who are already infected, but more or less well and doing something about them. And the something usually from what I understand means AZT. MR. SCHMIDT: If they're lucky. MR. DALTON: The definition that Dr. Francis gave I liked it too, but I wasn't sure that it squared with what most people mean when they talk about early intervention. I guess that's what I'd like to hear from the people around the table. For example, the money that is now is beginning to flow for early intervention. Is it for bahvioral follow-up and psychosocial follow-up and dealing with the many logistics problems that people who are infected face or is it the money for drugs? MR. GOLDMAN: I was just going to basically try to find out whether or not there was some agreement as to where early intervention ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 68 begins and ends. And I guess really where Harlon and Don were talking is that early intervention -- is case finding part of early intervention, has community-based education changed behavior as part of early intervention or does early intervention begin when a person is diagnosed as being infected or as Don said it ends when a person is diagnosed as being infected. And I'm not sure. MS. WILSON: First of all, I think I'd like to say that I haven't seen any money for early intervention yet. But I think that in terms of what we are conceptually doing in New Mexico is looking at providing services to people who we find in our counseling and testing programs who are referred to us from other providers. This is one of the few diseases where we rl take an infectious person and ignore them for six — anmntntne eee to eight years. And I think that’s sort of a — - dangerous thing to do with this disease as any nl ) disease. And that’s totally against public health models that we have developed over the years. So, what we're trying to do is take those HIV-positive people and provide them with some services and also to insure that there are public health concerns that are met. ELLIOTT & BROWNLOW, INC. DALLAS, TEXAS (214)520-3090 And, for example, I would say that we need to keep them in whatever testing site we have. Whether it's a community-based testing site that’s run by us or whether it's one of the health departments.