MARSHA MARTIN: Good evening, everyone. I am Marsha Martin, the executive director of AIDS Action. And I am very pleased to welcome you to our satellite session entitled “The U.S. Domestic HIV/AIDS Agenda: 20 Years Later, A Global Conversation.” We are very happy that you are here. And on behalf of the staff and the board and the counsel, again, we welcome you.
A couple of things that I would like to ask that we do. That is, allow each to get up and move around. This room is going to be unbelievably hot and stuffy. And we apologize for that. So just allow for your members to be able to move around, and allow for them to excuse themselves.
But the other thing I want to do as we remember to be courteous to one another and provide some space to one another, is ask us if we could pause for a minute, and take a moment to reflect and remember and celebrate and commemorate. Many of us have lost many of our friends and colleagues and family members to HIV and AIDS. Many of us are living with HIV and AIDS.
And we’ve been here for a few days. And we’ve been running around. And we’ve been working hard. And we’ve been talking and sharing. And I know we’ve been reflecting and remembering, but I would just like to ask us in the tradition that I have grown up with, is just to pause for a moment and have a little deep breathing in and some breathing out, and to remember and reflect, and pause for a moment to honor those who have gone before and who have helped us to be here where we are today. So could we please observe a moment of silence?
Thank you. It is now my pleasure to introduce Ron Johnson. Ronald Johnson currently serves as the associate director at Gay Men’s Health Crisis in New York City, the nation’s oldest and largest AIDS organization.
In his current role, Ron manages GMHC’s public policy and communication functions, and serves (Misspelled?) Men’s Health Crisis, Mr. Johnson served as the citywide coordinator for AIDS policy in the office of -– served as the city co-chair of the HIV Health and Human Services Planning Council.
Ron Johnson has also served as the executive director of the minority task force on AIDS in New York City. He has served on many boards, including Positive Health Project, the Names Project, the National Black Lesbian and Gay Leadership Forum, Body Positive, Lambda Legal Defense and Education Fund, and AIDS Action Council.
And it is my honor and my privilege to introduce Ron to you, because he is also the chair of my board. Ron?
(applause)
RON JOHNSON: I dare not touch this keyboard, because God only knows what’ll happen.
Thank you. And I also want to join Marsha in welcoming all of you to this satellite session, and very much appreciate your being here.
One of my pet peeves at this conference is introductory speakers who give a speech and take up too much time from the program. So I will try to avoid being my own pet peeve. But I do want to, as I said, welcome you here, and to say a word about AIDS Action.
I think most of you have a handout on AIDS Action, but I do want to highlight that AIDS Action was founded in 1984 by local AIDS service organizations, and was founded by the then largest -– some of the largest AIDS service organizations at that time in 1984, many of which are represented here on this first panel.
And I think the fact that AIDS Action as a national advocacy organization, dedicated to national AIDS policy and advocating for national AIDS policies that addressed treatment and care, prevention, and research, that was founded by local organizations, is very much a metaphor and symbolic of the response to AIDS in the United States, and very much a part of why we want to talk about here tonight.
And AIDS Action today is still a membership organization representing community-based organizations, local public health departments, over 3,200 affiliate members throughout the United States. And the membership core and membership nature of AIDS Action is very important to who and what we are at AIDS Action.
Tonight, as Marsha indicated, we want to take time here at this global international conference to look at the epidemic in the United States. And of course, one might say why are we here in Barcelona at an international AIDS conference, talking about AIDS in the United States?
And one of the main reasons we wanted to do that is to really remind ourselves and send the message both here to the conference and around the world that AIDS remains a crisis in the United States, that the -–
(applause)
That the epidemic is not over in the United States, and that in many ways, we are still in the beginning of our epidemic. And even after 20 years, we have a very, very important agenda before us.
And doing it here in Barcelona at an international conference reminds us that the United States and the domestic AIDS epidemic is not an isolated phenomena. It is very much a part of the global AIDS pandemic, but it is a unique epidemic in and of itself. And that uniqueness as part of the global epidemic is why we’re doing it here at the international AIDS conference, and why felt it was really important for us to have this satellite session to enable to look at the domestic AIDS agenda and to reinvigorate that agenda.
And AIDS Action will be holding a press conference tomorrow, to announce a national call to action. And the purpose of that national call to action is, in fact, to reinvigorate the national agenda, to address the complacency, to address lapses of leadership at all levels, both governmental and in the private sector, that we need to, as I said, to reinvigorate, to deal with the challenges that are ahead of us.
And the three panels that we have, I’m hopeful, will stimulate our thinking and hopefully stimulate discussion. And I know this is a growing crowd that we have shoe-horning into this room. And I welcome all the latecomers.
(laughter)
But I also hope -- we have three very distinguished panels. And I’m hopeful that the panelists will not only express their thoughts and their thinking on the domestic agenda and AIDS in America, but -- and I think more importantly -- stimulate your thoughts and one hopes stimulates some discussion, and perhaps some disagreement. Because we really need to deal with the kinds of challenges that are before us in the AIDS in America, and to talk out, not only the challenges, but to talk out and to think out the responses that we need in order to respond to the continuing epidemic that we have there back home in America.
Well, as I said, my pet peeve is that introductory speakers that go on and on. So I’m going to stop. And I’d like to introduce our first moderator, R. Scott Hitt. Dr. Hitt is an L.A.-based physician, who currently serves as the president of the American Academy of HIV Medicine, which is an organization of HIV specialists, dedicated to promoting excellence in HIV care through advocacy and education.
Scott served as the chair of the Presidential Advisory Council on HIV- AIDS and was appointed by Bill Clinton and Donna Shalala in that position, which he served from 1995 to 2000. And I had the honor and the privilege of being a member of the Presidential Advisory Council under Scott’s very valued leadership and very much appreciate his leadership.
Scott is recognized as a leading HIV-AIDS healthcare practitioner, and has had a private practice in which he’s served over 1,000 HIV patients.
It is my great pleasure and honor to introduce Scott Hitt, who will moderate the first panel.
(applause)
SCOTT HITT: Thank you. The title of our panel discussion tonight, the first panel, is “The History of the Domestic AIDS Epidemic” to focus on the things that have happened in the U.S. over the past 20 years, to kind of get a glimpse into the community’s response to AIDS and how it’s mobilized, its infrastructure has been created, development, the advocacy that’s happened.
It’s been quite a good model for other diseases and also for other countries to look at, at least some model of how to mobilize when the government necessarily wasn’t helping us to mobilize, if we remember.
I think that we can really briefly do an overview of 20 years and say that it’s down to three big words, for me at least. And that’s a lot of changes, a lot of challenges, and unfortunately now a lot of complacency.
And that’s been frustrating for all of us. If we kind of look at the epidemic way back we start around ’85, at a dot map of where the epidemic was in some of the major metropolitan areas, the government not really paying a lot of attention to this, but knowing in our communities that there was a large problem.
And then, of course, over the next four years, it started growing, but still, mostly in the large metropolitan areas. And when we look at what happened, just a brief overview, to kind of put our minds back then, you know, where were we -– actually, I need to go ahead a couple slides. And we may be out of order. Let’s just go up.
1980, first cases. Then (Misspelled?) recognized. Then we called it GRID. Then we called it AIDS. Then we found out, you know, four or five years into this epidemic, that it was a virus. And again, we have to put our minds back into that -- for those first few years, I remember saying to many people, “Well, it’s something that happens to people, but you know, not everybody’s going to get sick from this. Probably it’ll be maybe 5% or 10% that’ll get sick from this whole thing.”
And then realizing that that was wrong statement -- and as a physician being very frustrated about 90% of what I said, and it being wrong a few years later.
But then it was right again a few years after that, as we go back and forth with the pendulum. But 1986 -- now we’ve got a worldwide AIDS count at this horrific number of 100,000, not even imaginable where it’d be today.
And it wasn’t until ’87 that the first drug was approved, that there was a lot more demonstrating going on, that the NIH finally established the office of AIDS Research, their response to something that normally would’ve happened with a lot of other diseases in a few weeks or a few months -- not a few years.
But we still have a lot of things to battle. 1989, we had the Helms Amendment that says people with HIV can’t come into our country. Seems like we’re going backwards, not forward.
And of course, during that time, as we saw in the diagram, you know, things are getting worse, actually. And the epidemic is spreading no longer in the big cities, but also rurally in the South it’s becoming quite a problem.
And then, woops, go back. Then of course, as time goes on, we get the Ryan White Care Act passed. The World Health Organization starts recognizing this more. The Democratic and Republican conventions have speakers about it. So there’s a lot more visibility, but a lot of disappointments, too, as time goes on. You know, two steps forward, one step back in many ways.
So that’s kind of an overview. And then look at the epidemic in the U.S. over those years, what we see is a couple trends that are important. The number of people dying goes up, but then all starts going down.
But the real picture is the green bars. The number of people living with HIV is growing and growing, while the U.S., many people think the epidemic is gone and the complacency sets in, and yet we’ve got a growing problem that is, you know, taxing in infrastructure that still is not the model for healthcare in the world, to say the least.
All right, also in the background, we have a lot of mini epidemics. And we have new epidemics in the U.S. today that weren’t there 20 years ago. And that’s what we have to address. And the epidemics are in the subpopulations. The epidemic has changed quite a bit over the past 20 years, as many of you know, going more into communities of color and also not affecting the gay community as much as a proportion.
So the mini epidemic is there, and the burning embers are there as well. And of course, we’ve got all these conflicting things about treatment. And that confuses a lot of public policymakers. It confuses a lot of AIDS service organizations’ response to what we should do.
Is it curable or not? Can we eradicate it or not? Do we treat early or treat late? And all these things enter into a lot of the public policy discussions that we have.
One of the big successes we have had though is at some point getting the government to wake up and respond to this in a more appropriate manner. And these were pretty amazing numbers to see the funding go up.
And in fact, one of the more remarkable things was, as a percentage change of discretionary spending during the period of ’93 to ’96, we saw that, while government in the U.S. was shrinking, defense spending was going down, the federal budget was going up by just a little bit, AIDS’ spending was going up in a great proportion to everything else.
And this was due mostly to the fact of that activism in AIDS service organizations that are represented here today. We found quotes like this. I remember 20 years ago, we were an envy of Europe, that they used to approve drugs so quickly. And then all of a sudden, the FDA started restructuring to get drugs passed sooner in the U.S.
We’ve had a lot of successes to date. Ron Micurath (MS?), reorganization of the FDA, Medicaid, a whole program for drugs, when there are drug programs for diabetes or for hypertension, but there is for AIDS drugs, as there should be for the people that need them.
The housing opportunities, the office of AIDS Research. And so the community has risen over the past 20 years to educate and re-educate, and we’ve had a lot of successes. And we need to recognize those, and talk about how that happened, how we got rid of the stigmas and discrimination, at least the start of it, how the patchwork of financing has worked out, and how the AIDS service organizations responded to do that.
So with that, let me introduce who are panel is going to be tonight. Corrie’s (MS?) going to talk for about ten minutes, and then we’ll open it up to some questions and answers.
First we have Anna Oliveira, who’s at the Gay Men’s Health Crisis as an executive director. Again, the nation’s oldest and largest AIDS service organization. Prior to her current position at GMHC, she served as the organization’s director of Women’s Education Services.
We also have Fred Dillon here from the San Francisco AIDS Foundation. He’s the deputy director of public policy there and has -– his work has led to a lot of successful efforts in California with funding for ADAP, for efforts to legalize syringe exchange in California, which has been successful as well.
Craig Thompson is from AIDS Project Los Angeles, where he serves as the executive director. Prior to that, he was the chief financial officer at the AIDS Healthcare Foundation based in Los Angeles as well.
And Cornelius Baker, who is currently the executive director of Whitman Walker Clinic. Prior to that, he was the executive director of the National Association of People Living with AIDS. And he has served on numerous committees, the U.S. Center for CDC and Prevention, Committee on HIV and AIDS, U.S. Conference on Mayor’s Technical Assistance Program, and many of the U.S. public health services programs, and served in a lot of capacities.
So with that, let’s go ahead and start with Anna.
(applause)
ANNA OLIVEIRA: I don’t have Powerpoint.
Good evening. It’s a pleasure and an honor to be invited to be part of this panel. And first, I wanted to acknowledge that so many of people sitting in this room are colleagues. We happen to be or that’s how I feel sitting here –- in here, but I could be just as well sitting there and listening to you. So I want to acknowledge and let you know, everybody know that in the audience, there are many other leaders and many other founders in current, you know, very hard, dedicated working people, both as activists, as staff members of other AIDS service organizations, as governmental members of our partnerships.
So I just want to know that that’s the reality. And that’s also by way of saying that I think that’s a very characteristic trait of, you know, the United States of America in where we are in our struggles there.
I think that one of the points that I wanted to get across to you is that – Ron, who actually, Ron and I -- who’s my partner at GMHC. And I want him to know that, because this is a partnership. It’s a partnership of GMHC as well, is that the U.S., and you saw the chronology, isn’t in our response, in our 21st year. We are, you know, moving to our 22nd year.
And that brings some kinds of different challenges, but by no means does it mean that we have gotten it together, you know? And I wanted to say that very clearly. I can’t speak any louder than that. So –-
MALE SPEAKER: (Misspelled?).
ANNA OLIVEIRA: Okay. Sorry about that. Let me know if you can’t totally hear me. I’ll try to –-
MALE SPEAKER: A little louder.
ANNA OLIVEIRA: Okay. So GMHC, we actually -– I wanted to say for the record that we don’t think we are the largest AIDS service organization from a budgetary point of view. And I don’t want any of the other very large organizations to become invisible in that process.
We are very proud to be one amongst many large AIDS service organizations in the U.S. And I think, as my colleagues speak, also there are others that are not your –- this evening, who also operate and run very large AIDS service organizations in the U.S. So I wanted to put there.
But we are the oldest. We are the very first, as we call, organized community response to what at the time we didn’t know what it was. We didn’t know what it was called. And at the beginning of the GMHC, there have been some very fundamental pillars in the organization that I think set the course for where we are now.
And though they might have been taken on or not, but some of them were. One is that, you know, it’s in New York City -- GMHC is in New York City. And New York City in the United States is still the metropolitan area that has the very largest number of cases of people living with HIV and AIDS.
And we still -– we have in the city, we estimate, around 50,000 persons currently living with HIV and AIDS. We still have a very challenging situation of anywhere between 7,500 to 10,000 new infections every year. And if you think about New York City in the world, it’s a very rich city. It’s economically a very strong and rich city. It’s also in terms of human resources, a very powerful metropolitan area. And I think we have also another kind of wealth, which is our diversity.
We are a city that is composed of folks from all over the world, a very large percentage of immigrants and a very fluid, in that sense, very rich environment. It’s not a homogenous environment by any means.
It’s also a city where there’s a very rich sector of the city and a very poor sector of the city. And I need to say that because that is very much correlated with the expansion of the HIV epidemic and the AIDS epidemic in the city.
GMHC, when it was created, that was 1981. You remember like that’s right after the CDC made, you know, identification of some unknown health conditions that were observed among gay men. And at that time, it was really the gay community in the city that organized itself and began to respond.
And it responded both in terms of advocacy, demanding that research were done, that funds were allocated, as well as you responded by providing services to volunteers, took its own lead at that time.
So for instance, we created – it’s first service was a hotline. And what they meant was a telephone in somebody’s apartment, where people left messages and then they get calls back, etcetera, etcetera. And these are volunteers.
And from that, it evolved to a group of people and then a telephone moved to a room and a space in, you know, in small office, etcetera, etcetera. You also developed what’s called the Buddy Program. It’s still called the Buddy program. And what is, is pairing people. People would take on somebody that was living with HIV and AIDS and really literally help them, do with them, and for them, whatever it is that they couldn’t do -- take them to medical visits, do their laundry, etcetera. Whatever it was needed.
It also began to develop -- participate with other activists in some of the demands that you heard around the funding and strings around the FDA federal –- what is FDA -– I want to make sure I don’t use a lot of acronyms that, you know, are very local to us, but don’t necessarily make sense in a global perspective.
So –- and FDA wasn’t really related to the group of community folks responding. As it became to become more formerly organized, I also want to point out that, in New York, many other communities and many other responses occurred.
Act Up, for instance, was very strong in New York City. And today, in New York City and the metropolitan area is an area where we have hundreds, really hundreds of organizations working in this. And we have small organizations, medium sized organizations, large organizations. We have organizations that only do HIV and AIDS services. And we also have organizations that do a variety of other social services, that also provides AIDS services.
So we started off as an organized community response, primarily in what was visible at the time, which was the gay male community. But something that I think we have tended to not see so clearly is that, from the very first beginning, the gay community and its allies -- and I want to start talking about that -- they began to respond to that, was a lot more diverse than what we have in our minds and in our picture.
The board of GMHC today is way more diverse than it has ever been, but it was from the beginning a board that had members of black communities, of Latino communities, that had folks that do not identify with gay, lesbian, bisexuals -- they identify as heterosexual.
They had folks that were researchers and others that were consumers, etcetera. And that was the same case for clients. The folks coming for services were primarily gay men at the beginning, primarily white because that was the tip of the iceberg that we were seeing.
But that never was only white and only gay men. And I’m saying that because I think that’s very important for us not to perpetuate the invisibility of women in the epidemic, perpetuate the invisibility of poor folks in the epidemic, and perpetuate the invisibility of communities of color in the epidemic, from the very beginning.
So the agency grew. The agency from the beginning sought a combination of funds from governmental public funds, as well as from private donors. Now, the economic days of private giving of the agency was primarily a white, middle-class base. And that’s why I think so many times we confused the economic funding of GMHC at the beginning with actually the comprehension of its participants, as board members, be it staff or as consumers.
Although the agency’s now 21 years old year, over the 20 years, that seed of diversity has reblossomed. Well, for one thing, we look at me. And you can see that, you know, that’s an unlikely probability probably, you know, ten years ago.
And what it reflects is many things, but I think the most important thing that it reflects is that, as an organization, as bureaucratic as it is, as settled in its ways as it is, it’s been very permeable. It’s being an agency that has been able to take on with all kinds of imperfections, absolutely, but has been able to take on a big challenge of the epidemic for us in the U.S. and in the city.
Which is that we have many epidemics. You heard Scott say that. And with that, we have an epidemic that has moved very fast into very vulnerable communities. And these are communities that are primarily poor. These are communities that are primarily -– come from a history of enormous racism in the U.S. And these are communities that come also from the disempowerment of women in our society and the vulnerability of the young -- the youth in general.
So as we saw the epidemic, as we still continue to see, expand into other communities, sometimes we said, does this mean that the epidemic left the gay community? And from our point of view, it hasn’t left the gay community.
Unfortunately, it has expanded into other communities. And it’s been very important for us, 21 years later, not to get into this either/or paradigm, you know? Because when we do that, and AIDS constituents does that, when we do that, the moment we do that, whatever we leave behind is where the rates of infection go up again.
So our own invisibility of poorer communities in the beginning, I think facilitated the epidemic expanding to them faster. Our own invisibility currently recent years, as we took on, as we must the impact –- the disproportional effect in the United States of the AIDS epidemic in poor communities and communities of color, we have been pretending that it has left the gay community.
And it’s almost as if we say, “Well when we use the word in the U.S. ‘gay community,’ we mean white, gay men. And when we use the word ‘communities of color,’ we mean everybody’s straight.”
And that’s not the reality. It’s not the reality in our lives. So as an agency, where we are is in a place where we serve currently for 11,000 persons in New York City.
It’s about 20%, 25% of folks with HIV and AIDS. Who do they serve? Just to give you a little bit of contrast. Two-thirds of who we serve are persons that identify either as gay, bisexual, lesbians or transgender.
Small percentage, very small, of our clients identify as transgender. Our staff is close to 60% members of communities of color, diverse members of communities of color. And our board is about 50%, 51%, which is the most -– the part of the agency that has changed in its slowest manner, in which diversification.
Our funding is about 30% public funding, and about 65% private funding, and then 5% or so of what called third party, where we provide services and we get paid for services directly.
It’s been very important for us to maintain private funding, along with public funding, because of the independence that it provides in designing services to meet the shifting needs of the epidemic.
We have -– the mission of GMHC has what I call three plus one parts. It says that the agency is dedicated to providing education, public education about HIV and AIDs. The agency’s dedicated to provide service -- immediate help for persons living with HIV and AIDS. And the agency is dedicated to providing public advocacy, which is institutionalized and changes for funding, loss for protecting against stigma, discrimination, confidentiality issues.
So those are the three parts -- public education, service, and advocacy.
And then there’s a plus one part, which is that GMHC does all that in the context of fighting homophobia and affirming the rights and the needs the gay, lesbian and bisexual, transgender community.
And that’s really critical for us, because who we serve now are our primarily -- two-thirds of our clients are primarily gay and bisexual men from communities of color, who are poor. And it’s exactly in New York, one of the populations, and we’ll talk about the other one, where the epidemic has enormous rates of disproportionate impact.
We simply -- our most recent surveillance of HIV positive impact in the city and the state show that 87% of the new HIV infections, not AIDS cases necessarily, but HIV infections, come from communities of color. Studies then recently in New York City show that young, black, gay and bisexually active men have a rate of infection for HIV that it is four times or five times higher than Latinos have and seven more times higher than if it’s eight or nine what the white counterparts have. So we’re very, very focused on that.
And then the other critical population that we serve are women. About 25% of our clients are women. And who they are, they are poor women from the metropolitan area. They are women of color. They are about 60% from a variety of black communities, and about 40% with a variety of Latino communities. And they are heads of households. They come with their families.
And when I came to GMHC, I actually came to expand the women’s program. And before I took that job, you need to know that I thought to myself, “what’s going on?” You know, Gay Men’s Health Crisis is, you know, wanting to expand services for women. Is it because there’s a lot of funding there? You know, what do you know?
So actually, there isn’t. We don’t have a lot of grants that do that. But the most important reason that I came to do that, was that, when I spoke with the women that were there, they told me that it was very important for them to come to GMHC. And at that time, there was about 18% of our clients, because there were three things that the agency offered that was critical for them.
One was that you had a continuum of service from prevention to very long term care in one place -- kind of a one-stop shop. The other, they said, “I go there, and the men don’t bother me.”
(laughter)
Now I know that that is funny and that’s a good thing, but that talks about the history of sexual violence, trauma and abuse that women living with HIV and AIDS carry with them. And that tells us what we need to do about it, right?
And the third reason was that we had, you know -- they could bring their kids.
(AUDIO BREAK)
FRED DILLON: Good evening, you all.
GROUP: Good evening.
FRED DILLON: Great to see so many faces in this room. It’s really wonderful to see so many folks interested in the U.S. response to the global epidemic. And I really look forward to working with a lot of you when we get back home, for those of you from the United States, in continuing to bolster the U.S. response to the epidemic. There’s still a lot of work ahead of us.
My name is Fred Dillon. I’m the policy director at the San Francisco AIDS Foundation. And as I go through my presentation -- unfortunately, Pat Kirsten, who’s our executive director, couldn’t be here tonight, otherwise she would probably be here instead of me. But I just want to acknowledge her longstanding commitment and leadership in the fight against AIDS. She’s been our executive director for over ten years. So it’s really unfortunate she couldn’t be here this evening.
That said, like Gay Men’s Health Crisis, the AIDS Foundation’s history began at the very onset of the HIV epidemic in the United States. So tonight I just want to give you kind of a quick snapshot of the history of the AIDS Foundation, and how our agency has transformed, as the epidemic has changed.
So let’s see. On June 6, 1981, this article appeared in “The San Francisco Chronicle.” The first sentence reads, “A mysterious outbreak of a sometimes fatal pneumonia among gay men has occurred in San Francisco and several other major cities.”
By that time, local gay activists, community leaders, physicians and nurses were already mobilizing in a desperate attempt to understand what was killing so many in our community.
A variety of leaders in the S.F. gay community, including Dr. Marcus Conence (MS?), Clee (Misspelled?) Jones, Phil Conway, and many others came together to create an organization called The Karposi Sarcoma Research and Education Foundation, which eventually was soon to become the San Francisco AIDs Foundation.
In 1982, we were in a crisis to be sure, but a crisis we naively believed would be short-lived. In May of 1983, the first candlelight march on AIDS was organized in San Francisco by Bobby Reynolds, Gary Walsh, and Bobby Campbell. We have since lost all of these men to AIDs.
By 1984, the virus that caused AIDS was finally identified. Within months, a blood test to detect antibodies was available. And the foundation, in conjunction with the Department of Public Health and the AIDS Health Project, launched a massive information campaign about testing.
Our hotline, that had been operating seven days a week, lit up with calls. During that same time period, San Francisco health professionals at the department of Public Health and the San Francisco General Hospital, along with many of the AIDS service providers, developed what would eventually become known as the San Francisco Model of Care for people with AIDS.
The system of comprehensive care and support would ultimately be replicated throughout the country.
In those early days, our focus on primary prevention was amplified, because there was still no treatment for AIDS. Our prevention work targeted at targeting sexually active adults -- especially gay men as that was where the epidemic was most heavily hitting in San Francisco -- evolved over the years.
We used many different approaches. We used –- we provided brochures and written safe sex guidelines. We distributed condoms and demystified condom use. We eroticized safe sex. At times, these approaches were controversial. At times, they were humorous. Sometimes, they were both.
New HIV infections in San Francisco dropped from about 8,000 per year to about 500 per year by the mid-‘90s, as a result of these and other efforts in our city, but the numbers began to rise again in the mid- ‘90s. And our AIDS prevention efforts seemed stale.
In 1996, we overhauled our entire approach to HIV prevention. With researchers from UCSF Center for AIDS Prevention studies, extensive qualititative interviews were conducted with men engaging in high-risk behaviors. This research led us to put together our Gay Life program, as well as our Bloc (MS?) Buddies Esteem programs, as well as the Assumptions campaign, which urged men not to make assumptions about their part of HIV status, and included the tag line, “How do you know what you know?”
Early on in the epidemic, it became apparent that the AIDS epidemic in San Francisco would disproportionally affect injecting drug users, in addition to gay men.
Again, our prevention strategy targeting injection drug users evolved over the years. Bleach was known to kill HIV, so bottles of bleach were distributed in outreach efforts for cleaning needles.
The Works comic book and the “don’t share” billboards utilized different mass media to convey blunt messages to folks who were sharing needles.
We even created a real-life superhero in Bleachman, who walked the street distributing bleach and condoms.
(laughter)
By 1989, it was evident that the underground needle exchange program in San Francisco called Prevention Point had been hugely successful in slowing the spread of HIV among injection drug users. This project was modeled on many successful programs that had been implemented previously in Europe.
The foundation secured private funding for Prevention Point and worked to legalize (MS?) exchange in California and in San Francisco specifically.
The AIDS Foundation board then created HIV Prevention Project, HPP, so the city funding could be used to purchase needles. HPP is now the largest needle exchange in the United States, exchanging over 2 million syringes annually, and is one of the key reasons for the virtual elimination of pediatric AIDS in San Francisco, as well as the low rates of HIV among injection drug users overall in our city.
Changes in HIV treatment options have also transformed our work over the years. From the initial discovery that AZT slows the replication of HIV, to the advent of protease inhibitors, and the broad use of combination therapy, our agency has had to reinvent itself to meet the needs of our clients in increasingly complex treatment environment.
In 1987, the foundation created English and then Spanish versions of BETA, the Bulletin of Experimental Treatment for AIDS, to give folks information on what was happening and what was developing.
With the development of combination therapies, and to better serve our (MS?) clients, we expanded our approach to treatment information in 1996 with the creation of Positive News in English and Spanish, one on one treatment consultations, treatment forums, and treatment lunches for our clients.
Advances in treatment necessarily alter our approach to direct services, as well. The gender, racial and cultural differences in accessing care and treatment came to the fore.
We organized direct service programs that focused on these differences from the Women in Families Program to the Women in Families Holiday Party, to Vide (MS?), efforts were made to ensure cultural and gender differences did not interfere with access to care and treatment.
With Action Point, established in 2000, we sought support for the disenfranchised to adhere to their treatments.
From the beginning, our epidemic, so disproportionately comprised of gay men and injection drug users, was considered by the federal government to be our problem alone. Our people were seen as expendable.
But we have been served well over the years by our leaders at the foundation and throughout San Francisco, willing to stand up for the needs of those in our community and to demand action in Washington, D.C., Sacramento and city hall.
Early HIV policy advances grew out of the outrage of HIV activists demanding to be heard by a government that refused to listen. In 1987, SFA executive director Tim Wolfred (Misspelled?) and board chair Bill Glenn (Misspelled?) joined other AIDS activists from throughout the country, and were arrested at the gates of the White House while protesting the silence of the president and the shame of a nation.
That same year, the AIDS Coalition to Unleash Power, the legitimate Act Up, was founded in New York and chapters sprang up throughout the country.
Yet as late as 1989, there was still no official response from Washington for AIDS care and treatment. At our offices, federal disaster relief legislation to secure funding for HIV epicenters was first conceptualized with many of our partners in this room.
Back in Washington, lawmakers and advocates throughout the country worked to move this landmark legislation, the Care Act, through Congress. Near the time of its passage, Ryan White, who had been barred from his school in Indiana because of his HIV status, died of AIDS. His mother, Jeannie, gave permission for her son’s name to be added to the Act, which is now the Ryan White Care Act.
After the authorization of the Ryan White Care Act, the foundation worked with our partners to increase congressional funding to the bill. And as Scott mentioned that has grown to nearly $2 billion at this point in time.
Today, in light of treatment advances now available in the U.S., it is difficult to remember the catastrophe that was happening in the early years of the epidemic.
The brutality of that time is being repeated 100 fold over in Africa and throughout the rest of the developing world. And to ignore the global epidemic, we believe, would be an insult to our own history.
Indeed in the past year, the AIDS Foundation’s board unanimously voted to launch the Pangea Global AIDS Foundation. In the past six months, Pangea’s CEO, Dr. Eric Goosby (Misspelled?), and his staff, have solidified working relationships with physicians and providers in Rwanda, South Africa, and Uganda.
Having looked at our past, I now would just like to take a couple moments to talk about some of the lessons we have learned, as well as the challenges I believe we face in the future. And I will keep these brief.
There are just four quick points I want to make. First, a relatively small group of committed and active citizens can make a difference and can force a government to pay attention, even if it doesn’t want to.
We must not allow ourselves to drown in sea of voices that says “it can’t be done.” Global acts as a treatment for all, in both the U.S. and globally is not just a dream. It is a reality we can make happen and that we need to make happen.
That said, we should not underestimate the challenges we face in the U.S. The U.S. as a government is the only developed country that does not provide universal healthcare for its own citizens. So to expect it to now be focused on the global front, it’s an enormous challenge. And we can’t take that lightly. And we need to push for both very, very hard.
The third point I’d like to make is that the epidemic, like the virus itself, is constantly changing and evolving. And we have to be facile in adapting our views to these new realities constantly, otherwise we become stale and ineffective.
And we have to constantly remember the complexity of the epidemic and be willing to hold the complexities, and not allow ourselves to be forced into sound bytes or quick and simple answers to very complex and difficult questions. And the U.S. culture, the media, the politicians -- we are often being bombarded for quick, simple answers. And often, there are not those, and we need to resist providing quick and simple answers to very difficult questions.
Finally, the last thing I’d say is another critical lesson we’ve learned in San Francisco, and throughout the United States, is that care and prevention are an inexorably linked. For too long in the U.S., we kept them compartmentalized and separate. Others can learn from our mistakes and work to develop a more effective and integrated system throughout the world.
Thanks for the opportunity to speak tonight.
(applause)
CRAIG THOMPSON: Good evening. I have the great advantage and disadvantage of speaking after several of my esteemed colleagues. And so, they’ve said a lot of the things I was going to say, but it also gives me the opportunity to point out some of the incredible similarities of our organizations, and some of the incredible differences, and some of the similar paths we’ve taken and some of the different paths.
My name is Craig Thompson. I’m the executive director of AIDS Project Los Angeles. I’ve been personally and professionally involved in this fight since 1992. And I’ve been living with HIV since 1984. And I laugh and stop to hear talks about telling his early patients at that point that they HIV. I found out I had HIV when I had a CD-4 test done, because we didn't even have an antibody test, but I had 504 T cells.
And we knew pretty well, even in the 1984, that that was significantly lower than what a normal healthy immune system would like. I remember at that point comparing notes with my friends of what our doctors were telling us of what percentage of people were going to get AIDS. And it ranged from 15% to 70% in our unofficial survey of doctors in New York, San Francisco, and Los Angeles.
And we also realized there was a difference of opinion and doctors were more conservative in the east than they were in the west, as far as their views of what was going on.
This is all pre-Internet days. So you can image how difficult it was for us to communicate, but those were the conversations we had.
It’s really important for me to put together, particularly looking back in the early years, and to just give a major disclaimer. And that is to say that, whenever I look at the AIDS epidemic and what we did right and what we did wrong and what we can learn from what has gone on, it’s really impossible to separate the personal and the professional.
The response to the AIDS epidemic came from a very, very personal place for all of us. And it came from an incredible sense of loss. And it is impossible -- and hopefully we will never have to repeat that incredible sense of loss to be able to get the kind of response we need today around AIDS.
But to take that away and to try to make anybody look back honestly and uncritically is almost impossible, because this is such a personal fight for all of us.
We got involved for lots of reasons. A lot of us got involved because we thought we could get better access to information, and we had a better chance of survival at being an insider, instead of an outsider.
That’s not a very commendable thing to say, but it was what drove a lot of the early activists. We also, at that point, there was a tremendous amount of prestige in working in AIDS. There is no prestige left in working in AIDS.
We are -– you tell people now you work for an AIDS service organization, people say, “Oh, that’s nice.” 15 years ago, they didn’t say that, “oh, that’s nice.” You were doing the Lord’s work. And we’ve lost that piece. And I don’t know how we get it back, but I would really like to see us try.
Fortunately, in most parts of the United States, AIDS is no longer an immediate death sentence. It was in those days. And again, we just can’t take away that motivation and that fear from our early recollections and what we did.
When I look at the beginnings of AIDS Project Los Angeles, that MMWR article that came out the day before “The San Francisco Chronicle” article was actually some Los Angeles physicians reporting on some cases in L.A. that they were seeing of KS.
So what happened in Los Angeles? The response was almost immediate in Los Angeles, San Francisco, and New York. L.A. again, something I’m not particularly proud of, but a group of people met at a gay and lesbian organization in Los Angeles and said to that organization, “you need to do something about this.”
And that organization said, “no, we don’t think it’s time yet.” So what did they do? They went and founded their own organization, which became AIDS Project Los Angeles.
Unfortunately, we have a long history of founding too many organizations, and not working collaboratively well enough with each other. And so, that’s one of the reasons we have some of the problems that we have now.
And I have to say that honestly, you know, if the response had been there, the response people had wanted, there would not be an AIDS Project Los Angeles today.
When those folks were looking for information, they had a speaker come down from the Karposi Sarcoma Foundation of the San Francisco AIDS Foundation who came down and spoke to them about what was going on in San Francisco.
What was the first program that was started in APLA? A hotline. The first program started at GMHC, a hotline. The first program started at San Francisco AIDS Foundation, a hotline. What information were those volunteers? And it was all volunteer-driven, putting out the same information.
There wasn’t much, but they were communicating as best they possibly could, because they had to. And they were working very well together. And they were collaborative. They were not competitive.
And it’s very, very hard for us now in the world that we live in, to be entirely collaborative, and to put away our competitive nature and our feeling of getting ours for the greater good.
And I’m very proud of the fact that the roots of the AIDS epidemic and the response to the AIDS epidemic really came from that feeling of collaboration.
When you look at Los Angeles County, and you look at the epidemic, one of the great strengths of having organizations regionally, and not having a national response to AIDS initially, was we created very strong local vibrant responses to the AIDS epidemic, which meant they could be local and they could be different.
And the epidemic in Los Angeles still remains very different than the epidemic in Washington, D.C. or New York, or the rural south. The challenges we faced in Los Angeles are very different from the challenges of other cities. And we had the opportunity, and these local organizations had the opportunity, to respond appropriately to local conditions without being mandated from either the government or other funders to do things a particular way.
For example, in Los Angeles, the first information pamphlet that APLA put out in 1983 was in English and Spanish. They didn’t even think about doing it except doing it in Spanish. That it just wouldn’t have made sense in Los Angeles in the community at that time, or certainly not now, to put out anything that wasn’t also in Spanish.
In Los Angeles in 1992, a majority of the new clients of AIDS Project Los Angeles were people of color of the new clients. That’s ten years ago. So when people talk about this recent change in the face of AIDS, the year I got involved, 1992, the face had already changed. That’s a reality we’ve been dealing with for a number of years in most of our major metropolitan areas, but I think sometimes people are slow to react to, respond to, or admit, or to own.
The other thing you can’t separate out in Los Angeles and AIDS Project Los Angeles is frankly the response of the entertainment industry. When Rock Hudson announced in 1985 that he had HIV and then subsequently died of AIDS, that shook the world, but it really shook Los Angeles.
And we capitalized on it with a very friendly entertainment industry, a community that came out and stepped forward like no other community in America did. That was a distinct advantage we had. And we used that distinct advantage. And we continue to use it.
Our board continues to remain primarily folks from the entertainment industry who continue to go out, year after year, and raise a tremendous amount of money for AIDS services in Los Angeles.
But when we look back and we look at Elizabeth Taylor and David Geffen, and then Barry Diller, and Bette Midler and all those folks who stepped who stepped up in 1985, they also created something that is now considered everybody does it. They traded the celebrity endorsement to raise money for a cause.
That came from the AIDS community. We now wouldn’t think of having a dinner without a celebrity chairman, but we wouldn’t think about having somebody who didn’t entertain.
We do it all the time, but until 1985 and the response from Los Angeles, frankly, and to the AIDS crisis, it wasn’t done. And they also, the celebrity involvement, the people were willing to lend their name and their face and their fame to a cause.
I mean, who can forget getting Elizabeth Taylor to get the Senate floor absolutely full to talk about AIDS? They weren’t there to listen to AIDS. They were there to see what she looked like. And which I don’t think she was fully aware.
And she knew it, but she had them. And she had them eating out of her hand for 15 or 20 minutes which is 15 or 20 minutes more than we were getting anywhere else.
When Anna mentioned the services that GMHC started with, it’s an identical plate of services that existed in those early day. You have to understand that the average client enrolled in AIDS Project Los Angeles and was dead within 90 days.
So you were not dealing with a lot of clients. You were dealing with a lot of new clients, and major turnover, shall we say. And you were dealing with crisis. And you were dealing with -- it’s amazing, at some point in about 1989, our numbers started going up. And that’s when people got really worried, because up to that point, there had been one new client for one death.
Now that’s a terrible thing to go through. And staff were demoralized in having that many deaths. But suddenly, they were two new clients for one death. And then three clients for one death. And it wasn’t because mortality rates were going down. It was because we were beginning to enter those years of peak infection for HIV. We were beginning to be 10 and 12 years after those years when 12 and 13,000 people in Los Angeles County were becoming infected with HIV.
As Scott pointed out, the numbers start to come down. They come down because of therapy, but they’ve also come down because of our prevention efforts and the number of new infections in Los Angeles and across the country diminished starting the late ‘80s, early ‘90s, depending on sort of what data you looked at.
APLA has also been very involved in public policy, you know, both locally and nationally. And to put some of this in perspective, you know, California is a remarkable state, a state where, you know, we have -– we swing very widely politically every few years.
And the same state that in 1976, you know, fought very hard to not pass the Briggs Amendment, which would’ve forbade homosexuals from teaching in the public schools, ten years later, in 1986, we had the Proposition 69. Now don’t ask me how it was call 69, but it was Proposition 69, which allowed -– was allowed the state to quarantine people living with HIV.
But since we had no way of knowing who had HIV at that time, basically, it was an opportunity to quarantine gay people. And it came frighteningly close to passing. And in a number of counties in southern California, it did pass.
So we spent an awful lot of time, an awful lot of unproductive and really damaging time that we could’ve been spending doing a lot of other things, fighting a lot of really negative information, and a lot of really negative activities in those years.
The first AIDS walk, the first mass participation type of event, the first walk was an AIDS walk. And the first AIDS walk was in Los Angeles. We now have a walk for basically every possible disease you can imagine.
Another legacy of the AIDS community that we don’t think about, but that is a success story for us, I am going to close and just say one thing. And that is that I think the one lesson, I hope there’s one lesson that we can continue with us and learn from the early years of the AIDS epidemic. And that is I think that we’ve got to continue to recognize and acknowledge the role of sex between men continues to play in the epidemic, particularly in Los Angeles.
And that actually, a lot of the work we’re doing right now or whatever you want to call it is gay rights’ work. It’s around helping men who are having sex with men come to terms with having sex with men.
And the early AIDS epidemic came out of the gay rights’ movement. Many of us were thrust into coming out, because we came out because we realized we were engaging in behavior that could kill us. And we were seeing people who were dying. And it forced us to acknowledge our own sexuality.
I would suggest that same thing is happening today. There are people out there engaging in behaviors that they don’t acknowledge that can kill them. And we have to find a way to help those people acknowledge their behaviors, address their behaviors, and be proud of them, and not be ashamed of them if they’re gay, and that’s wonderful, and we embrace them.
And I’m fortunate enough that in the community that I was coming out in, which was New York at that time, there was an embracing of the gay community. It was embraced around for a terrible reason. And that was again around AIDS.
But I would hope we would be able to create that kind of atmosphere again for other men, particularly in areas like Los Angeles and San Francisco and other cities, where the epidemic continues to be driven by men who have sex with men.
And so, I hope that can get some of that energy back and some of that commitment back. And we can continue to embrace the multicultural and the multi-differences of all people living with HIV and AIDS. And I honestly don't believe that we’re going to be able to design effective prevention strategies until we understand a little bit more about who’s having sex with whom and help them acknowledge what they’re doing. And then we can start to address HIV prevention.
I’m encouraged in the discussions I have with my counterparts across the country. I’m encouraged in the United States that we have started to take on prevention again in a very, very active role.
It was a difficult thing for us to talk about a number of years. We didn’t want to stigmatize people with HIV. And the last four or five years, we’ve really notched things up around prevention. And I’m very encouraged to see that, but I hate to see us lose the term “gay” when we talk about prevention. Thank you.
(applause)
CORNELIUS BAKER: All right, good afternoon, everybody.
(laughter)
Dinner’s not until 11:00.
(laughter)
You’ve got a little time. I’m Cornelius Baker and the executive director of Whitman Walker Clinic in Washington, D.C.
And I want to actually start by just saying a little bit about the Washington that we serve, because I think, when people hear Washington, that their first image is of the White House or of the Capitol or power and wealth.
And that is true. That’s part of who we are in Washington, but the other part of who we are in Washington is like much of the rest of the world is being discussed here.
The District of Columbia, where our primary services and facilities for Whitman Walker Clinic are, in addition to our services in Maryland and Virginia. But the District of Columbia is a territory of the District, where the people who live there are denied their political rights and have no representation in our federal government.
And we are also a city that, because of our colonial past, is still saddled with structural debt that prevents us from developing a comprehensive healthcare system to service people. And it’s not able to really develop a significant tax base because we have height limitations and other structural limitations on the development of our city.
And this year alone, we will be facing a $200 million deficit because of the events of September 11th, which will directly cause us to cut back on essential city services and yet, not have any voice in Congress as debt relief is going to other parts of our country, because of the events of September 11th.
I think it’s important to recognize that, because certainly for us in the District of Columbia, which, while we don’t have the greatest number of cases, we have the highest rate of cases per capita with 1 in 20 adults being infected broadly.
And when you begin to look at segmenting the populations, African- American or gay men, the infection rates go down to one in ten, depending on which population that you’re talking about.
And so, our challenge is how do we in the most powerful city in the world, in the most developed country in the world, in the most wealthy country in the world, how do we exercise both our social and political advancement in a context of where a lot of that is still fully denied to us? And where we have very few industries or native wealth in which to draw.
Additionally -- now the other side of the District of Columbia is that we are a people in the city who’ve persevered through a lot of this. The city is 67% black, native born, African-Americans. And as a result, I think that it’s given us a lot of -- just because of our heritage -- it’s given us a lot of strength in terms of how we’ve put things together, how we make things work, and also the commitment of the city itself in responding to the HIV, the epidemic, despite its difficulties.
Through most of the ‘80s and ‘90s, the District was a place that was just coming into its own political being. The city was granted limited home rule, limited ability to elect its own local officials only in 1976 with the first elected counsel coming in, in 1979.
Immediately, the District enacted in 1982 the most comprehensive human rights law in the country, protecting everything from your ability to dress whatever way you want to dress, at work, have whatever hair color you want. And those things are, you know, put into the Human Rights Law.
And we have -- and the city was one of the first in the country, despite the fact that we had no formal response until a few years after the epidemic. It was one of the first in the country to establish AIDS funding, both of those under Mayor Marion Barry’s leadership.
And I always think it’s important to give Marion Barry a lot of credit for a lot of wonderful things that he did for our city.
And the city has really worked hard to really -– to support the development of gay and lesbian people in our city in addition to the human rights. Currently, we have two members of the city council who are gay men. And I think it’s really interesting when you look at the fact that in a city that is majority African-American, that both of those gay men are white, gay men and receiving support broadly across the city.
And I think it really speaks to the ability in the –- and one is a Republican and one is a Democrat. And I think it’s important to look at the ability of people within our city to look across issues of race and gender, and also party. And it certainly has affected the way we respond to HIV in Washington.
With that being said sort of as the social, cultural, political context of the city, I want to just say a few things about Whitman Walker Clinic, and then where we’re going, and what we’ve sort of learned. And not take up too much time, because we have two more panels that are going to give some very interesting thoughts as well.
Whitman Walker Clinic, unlike our colleagues in the other cities, was started in 1973 as a gay men’s STD clinic. And we actually, in some of the other cities, like in Boston, for instance, AIDS Action committee grew out of Fenway. And you know, in other cities, there -– a gay men’s health project separated from the AIDS project.
And in Washington, we maintained one program. And the clinic, beginning in 1983, with a forum that we held at Lusner auditorium, be responded to begin creating an AIDS education program.
It was interesting that first forum in 1983 was held at Lusner. And as such, it was at George Washington University. It had about 1,500 people. And most of them, however though, were white men.
And immediately, the clinic said that wasn’t okay. And we conducted another forum, which was held at the Clubhouse. And it was a forum for -– we have George Bollinger, and Chris Bates, and a lot of other people in this room were responsible for that and very much involved.
And that was held in July 1983. And I think this is important. I mean, just as Craig talked about how the face of the epidemic changed, we knew immediately in Washington that black, gay men were going to be affected. And at that time, we called it black gay and all the Third World men.
And so, so you’ll forgive me if I’m not using whatever the term is supposed to be today. We’ve all been – it’s a long time, and we’ve been so many things by now.
(laughter)
So –- but -- so anyway, but I think what it showed was a need immediately the duality in our responses. It showed that, first of all, that we recognized that we had to respond differently to different communities, but it also showed that we were willing to respond differently to different communities.
The clinic, however, has throughout its history, been caught sort of in the duality that we’ve seen expressed throughout the AIDS community around issues of race and around issues of power, and around issues of resource allocation, etcetera.
We continue to survive that. We’ve continued to challenge ourselves. But I say this because this is a struggle that we’re still in. And somehow we -– and maybe AIDS is really about racism, poverty and homophobia. Then it's really important, I think, for us to leave the conversation on those issues, and that we need to figure out at this juncture, how do we have this discussion, at least within our own selves, about race and the dynamics of power?
And then to proceed with issues of class and poverty. And I think, as Craig has mentioned, about our issues around homophobia, and exactly how are we going to push structural interventions around all three if we’re truly committed to the elimination of HIV.
(AUDIO GAP)
-- have developed a comprehensive health care model. We provide medical services that ranges from everything from our lab, to gentle care, and obviously all the primary care services, our own pharmacy. We have behavioral health services, which include mental healthcare, substance abuse services, housing programs, food banks. And we have our prevention services, which are, as Craig mentioned, probably undergoing the most evolution right now within the context of the clinic.
In fact, several of the areas that we’ve been dealing, which I’m very excited about, are -- we’ve been doing fundamentals around prevention. And especially when we look at gay men, ranging from programs like dating 101, that really are about recontextualizing gay men’s sexuality and their health about their relationships with one another, and how we value and respect each other, without, obviously, the full support broadly of the society.
And I think it’s important that when we look at HIV in our urban areas, for any of us, I mean, a lot of the prevention, and this is why issues like abstinence only that’s going on as a debate right now is important, no matter how progressive the District of Columbia is about its educational programs in its systems, the people who come to our community, and our population turns over every five to seven years.
So people who come to Washington, they’ve learned what they learned in Nebraska or in Iowa or in Kansas. And they come to our city at 19, 20 years old, a city where one in 20 adults are already infected, with no knowledge and no ability to truly protect themselves.
And so, we really have to be engaged in, not only our local discussions, but also the broader national discussions about what people learn wherever they learn it, so that when they come to our city, that we can help keep them healthy, and we can help them have a rich, wonderful life in our city.
So we’re doing that. We’re also returning to our roots. And actually this month, we’re going to be joining the D.C. Healthcare Alliance, which is our city’s attempt to provide healthcare for the poor. And we are expanding our gay and lesbian health clinics, to provide healthcare to poor gay and lesbian people, and to enroll them in full, primary care.
Because of the impact of the AIDS epidemic over the last 20 years, we turned a lot -– away from a lot of gay and lesbian specific work. And we really believe that at this juncture, that especially in serving the poor, when we look at who’s becoming more infected, it’s really important that we really create a framework of healthcare services and delivery around gay and lesbian people, that is culturally competent, and that really can engage with them in their sexual health and development.
And very, very excited about that, because I think it’s one of the most significant things that we can do. And I want to just say that, in doing it, we’re excited about it because it’s HIV negative people.
And you know, I think I’m going to join Craig in what I think Craig was trying to say -- as a person who is also positive, and I think that the work that we, who are HIV positive’s done, ranging from the Denver principles and the founding of NAFWA (MS?) and all of that work is very important.
But as we look at some -– as we look at where we’re going, we look at the trends, we look at the rising syphilis epidemic. We look at the sexuality of HIV positive people and engaged now, we also have to create a framework around people being negative, and people remaining HIV negative throughout their life.
And really supporting that. And that’s what actually I do in primary and medical care for gay and lesbian people and for gay and lesbian people is about, is how do we get people who are HIV negative into ongoing healthcare services, in the same way that we’ve developed them for HIV positive people?
And I think it’s important that we note that most HIV negative gay and lesbian people do not have access to culturally confident healthcare services.
So there’s a lot that’s already been said. And so, I don’t want to repeat any of that. I just wanted to share a few of those things with you about what we’re looking at and where we are.
I would like to just conclude when I think -– in looking at where do we go to next, and where we’ve been. I don’t want to be sort of the skunk in the garden party. Jane Silver's not here, so somebody needs to be.
(laughter)
But -– and Anna said it at the beginning. We’re not there yet. And I think that, if there’s any challenge about maybe this meeting, and maybe the frameworks at even which we’re having this discussion, is that -– and I think from listening to Bob Seattle’s presentation, and certainly Tony Fauci’s today, there is perhaps a growing -– there’s this sense, I sense, that we are -– that sort of we’re the throne or we’re -– in the United States, our having our pills, our having as low level of infection, our having wealth, etcetera, that that’s the state of the art, that that’s where we want everyone else to get to.
And I have to say that’s not where we want to be. And it’s not acceptable that our aspirations be limited to this. And that somehow there become a silence about what’s happening in our communities and in our country.
Because it condemns too many more of our people to sickness and death. And while we certainly are in total, total alignment with the hopes and aspirations of those in the South, and southern, you know, places in the world, for some of us, that’s the South Bronx. It’s south Mississippi. And it’s in the south in Anacostia.
And that we want more. We want more than this. And we want a vaccine. We want a cure. We want an end to these infections. And we cannot allow there to be a growing conspiracy of silence about who we are, and what our lives are about, and what it is that we’re trying to achieve in our country, as well as in the rest of the world.
(applause)
Special coverage from the XIV International AIDS Conference provided by kaisernetwork.org, a free service of the Kaiser Family Foundation.