EST, 1:00 P.M.
799 UNITED NATIONS PLAZA, 10TH FLOOR, NEW YORK, NY
MODERATOR: (In progress) everyone today for – to attend the most interesting panel for World AIDS Day 2011, marking the successes and challenges in fighting AIDS in the United States.
Our distinguished guests today include Dr. Marjorie Hill, who is the Chief Executive Officer of the Gay Men’s Health Crisis; Dr. Rowena Johnston, who is the Vice President and Director of Research at amfAR; Philip Hilton, who’s the Vice President for Administration for the National Black Leadership Commission; and Catherine Hart, Chief Operating Officer for the Long Island Association for AIDS Care.
And just as a reminder to everyone, following this briefing, at around 2:15, we’re going to be doing a digital video conference with Washington for their FPC briefing. So without further ado, let me turn this over to our panelists.
MR. HILTON: Thank you. Thank you very much, Mark. And good afternoon, everyone. And I had a wonderful opportunity to spend some quality time with our colleagues before we came in. My name again is Philip Hilton, and I am the Vice President for Administration. I’ve been with the National Black Leadership Commission on AIDS for 15 years. In November of 2012, we will observe our 25th anniversary as an organization. And our mission is to educate, mobilize, and empower black leaders to address issues related to HIV/AIDS prevention, treatment, and care, and other health disparities in their local communities. We have 11 affiliate chapters in the United States, six in New York State, where we were founded. And the other cities include Detroit, Michigan; Washington, DC; Baltimore, Maryland; Atlanta, Georgia; and Tampa, Florida.
MS. HART: Hi. My name is Catherine Hart, and I am the Chief Operating Officer for the Long Island Association for AIDS Care. I’ve been with LIAAC, as we say, for 20 years now, first as a volunteer and then as a staff member. We are the nation’s oldest suburban AIDS organization. We are community based, which means that we bring our services out into the community, since transportation is a major issue on Long Island. And our – for the last 10 years, we have added HIV testing to our program, so we have mobile vans that go out to the community. And while we started with people who were infected with HIV, we’ve moved into prevention and testing people who are at risk for HIV.
MS. HILL: Good afternoon. I’m Marjorie Hill, Chief Executive Officer of Gay Men’s Health Crisis. GMHC is the oldest AIDS service organization in the world. Our tag line used to be First in the Fight. We provide a full range of support services and connections to care for men, women, and families. And those services include HIV testing, treatment adherence, meals, vocational placement, legal services, case management, mental health services, and our newest program is we have a pharmacy and a youth drop-in center. Our commitment has always been to serving – providing direct service and to advocacy, and so we pride ourselves on being a advocacy organization, and are happy to be here on this eve, if you will, of World AIDS Day, and really challenged by the lack of – the silence, often, in the states about HIV and AIDS. And I’ll be happy to talk more about that.
MS. JOHNSTON: Hi, everybody. I’m Rowena Johnston, Vice President for Research at amfAR, the Foundation for AIDS Research. We are very much a research-oriented organization. We were founded in 1982, just one year, I believe, after GMHC, by two formidable ladies. One, Dr. Mathilde Krim, who was an immunologist. She worked in the laboratory on infectious diseases. The other was Elizabeth Taylor, Dame Elizabeth Taylor. The two ladies teamed up and decided that they needed to address what was emerging as the AIDS epidemic. This was before HIV had been identified, in fact, in 1982.
And since then, we have been very much dedicated to both supporting research and promoting the findings of research. We have four main programmatic areas. The one in which I’m in charge of is the funding of essentially laboratory research, looking for, especially, a cure for HIV. This is our focus for the last 10 years or so. We have an office in Washington, DC focused on advocacy for research-based policies. We have an office in Bangkok that is both rolling out treatment in the whole of Asia as well as monitoring the effect of the treatment in Asia. And we have an MSM program, men who have sex with men, supporting the development of advocacy in the developing world, trying to teach or trying to at least demonstrate and guide how one might advocate for the rights of populations like these who are highly stigmatized in the developing world.
MODERATOR: And we’re going to open this up to a dialogue at this point. The only thing that we ask is please state – when you’re asking a question, just to state your name for the record and your media organization. Thank you.
MR. HILTON: If I can begin, I just want to sort of bounce off something that Dr. Hill said. And Dr. Hill has been one of the leaders in this fight who inspired me to really not only come into it but to really stay with it, because it’s not easy. It’s not easy. We recognize that tomorrow, I believe, is the 23rd annual observance of World AIDS Day. And there’s always a bittersweet relationship that I have when I talk about World AIDS Day, because on the one hand, there’s so much wonderful progress that we’ve made, but still there are so much distance further that we must go.
And Dr. Hill said something earlier about noise. What’s happened now, 30 years living in the long shadow if this epidemic, it doesn’t have the same level of priority, of importance, of significance, at least here in the United States. People point to antiretroviral medications that have become sort of like a silver bullet or a panacea, as it were, and folks think that all they have to do is take a pill and that the worst is over. The fact remains is is that here, HIV/AIDS in the United States is a disease that definitely infects and affects at disproportionate rates African Americans and other communities of color.
And so regardless of what cultural differences may exist even in black communities, regardless of whatever we might lift up that divides us, there are so many things that we have in common. But yet and still, no one talks about it anymore. It doesn’t have the same level of importance anymore. Your American colleagues here in the media, we’re constantly fighting with them, almost to say please, please, please cover this because there are so many important issues that are not being addressed, that are not being reported to the American people. And so for the most part, when it’s not being talked about, it’s just not there. And I wish sometimes that – not sometimes, all the time – that the rates of infection with HIV and AIDS – new AIDS diagnosis could sort of disappear along with the silence – in other words, that if they were both related to each other. But the fact remains is you have people who are becoming newly infected every single day. And thousands upon thousands of new infections are going to occur just in the short period of time that we’re going to be spending together, and that people are still dying unnecessarily from a disease that is totally preventable.
And so what we talk about is the noise. My boss, C. Virginia Fields, who is our president and chief executive officer, talks all the time about the fact, where is the noise? Where is the alarm? Where is the clarion cry? Where are people on this issue? Where are we? And so I think this gives us an excellent opportunity to raise a little hell – pardon my French – and to really ratchet up the noise level around this epidemic because we’re a long, long, long way from over in this public health crisis.
MS. HILL: I think when we think about 30 years ago in the United States, there were no treatments. In fact, GMHC, in the early days, specifically told individuals, both our clients and others, not to get tested. That was our official position, because there was no treatment. And all it did was to further stigma. Today, we are offering HIV tests, rapid tests, at our clinic. We offer it in a mobile van, we go into it on the piers, and testing is a very routine part of our work.
When GMHC was founded 30 years ago, our principal focus was really on helping people die with dignity. We did a lot of hospital counseling and a lot of helping people disclose both their being gay and their HIV status to family members that had no idea about either, and to really help quell some of the community anxiety and challenge a government that was silent on HIV and AIDS. Today, we really are focusing on helping people live with dignity. Our growth area is vocational training. We have individuals who are engaged in workforce development and GED and in college prep, something that was not even imaginable even 20 years ago.
MS. JOHNSTON: To pick on – up on something that Marjorie was saying, I think the epidemic these days – and we see – so let me start by saying, as you all know, both UNAIDS and the U.S. Centers for Disease Control released numbers recently that help us keep track of where we are in the epidemic, both worldwide as well as here in the United States. And I think there’s a lot to be hopeful for in what we’re seeing in the UNAIDS report. There’s a lot of work to be done, but let me start with what I think there is to be hopeful for, and that is both in terms of new infections worldwide as well as deaths worldwide, we have overall seen a decrease over the last five to ten years. And I think we owe a lot to antiretroviral therapy for that being the case. And to retroviral therapy, we had the first drug in 1987, AZT, and it took a long time, really, for the next drug to be available. But it was in the mid-1990s that we had what is commonly known as the AIDS drug cocktail, and that is really what is responsible for really decreasing – both decreasing death rates and increasing the ability of people who are taking the medication to live longer, healthier lives.
And what we’re seeing around the world as more people become able to take the medications, as the finances and resources become available to get that to more people, we’re seeing longer lives, and therefore an increase, actually, in the number of people who are living with HIV, which in a way is good news in terms of people living longer, and we are seeing fewer deaths.
So this comes with a couple of caveats. That is we’re not getting treatment to as many people as needed. For every one that is going onto treatment, there are two to three new infections happening, and so we’re losing that race. For as good as antiretroviral therapy is, it’s not going to be the answer to ending this epidemic. As much as we’d love to get antiretroviral therapy out to everybody who needs it, and that must be done, it’s still not going to be the be all and end all of getting rid of this epidemic.
Another thing that I think is really very interesting in terms of looking at the world numbers is that there are two regions that are actually not seeing the decreases in new infections. And interestingly enough, those are North America and Europe. And these are obviously the regions of the world that have the most resources, and so we obviously need to really mobilize ourselves and inform ourselves and really reassert ourselves in terms of getting the message out there. We have the resources to address this. And I think one sense of optimism is we know a lot about how it is that we can prevent this infection from happening in the first place. We don’t have a vaccine; this much is true. But what we do have is the knowledge that reducing the number of sex partners is helpful. Delaying the age at which you have – first have sex is helpful. Certainly, using a condom is helpful. Condoms only work if you put them on. I think that’s a big challenge, getting people to actually use them.
MS. HILL: They don’t work in the pocketbook. (Laughter.)
PARTICIPANT: Or in the back pocket. (Laughter.)
MR. HILTON: Yes. Right. Exactly.
MS. JOHNSTON: One of the great prevention successes has been the use of antiretroviral therapy to prevent the transmission of HIV from a mother to her newborn infant. We know that that works incredibly well, and yet we don’t get that out to enough people around the world. Fewer than 50 percent of women who need that treatment have access to it. This is an easy implement – this is an easy intervention to implement, and would save hundreds of thousands of newborn infections every year.
What we’ve seen more recently, the last two, three years, we’ve seen different ways in which antiretroviral therapy can prevent HIV infection in other circumstances. If you are HIV positive and start treatment, then you reduce your viral load and you’re less likely to transmit to your partner. The decrease in transmitting to your partner is actually staggering.
The other really helpful or hopeful news that we know about antiretroviral therapy as prevention is if you’re uninfected and take antiretroviral therapy, if you’re engaging – this – these were studies done in gay men, and the assumption is that gay men are at relatively high risk for acquiring HIV. If you take antiretroviral therapy when you’re not yet infected, that can also protect you from acquiring HIV. And so we’re seeing a crossover between treatment and prevention, and these are very hopeful, I think, research news coming out in the last few years. The challenge now, that’s an incredible challenge, is how do we implement that, to whom, and where are those resources going to come from.
MS. Hill: I want also to echo something that Dr. Johnston said about what’s the good news and what’s the hope. We have within our capacity in the United States to end the AIDS epidemic. We have that. The theme for World AIDS Day this year is Getting to Zero. Okay, so how do we get to zero? We test people, we get people into treatment, we provide support to the individuals, we provide mental health services and other types of supports for substance abuse services. And so we have the tools. The medications now are far less toxic. People are – AIDS is no longer a death sentence.
However, the challenge is that we cannot get to zero if people don’t get tested. We can’t get to zero if medication is not available. And while PEPFAR has done a phenomenal job in terms of making antiretrovirals available to some people – obviously there’s still a great need – here in the United States, there is a waiting list for our ADAP; it’s our AIDS Drug Assistance Program. So we have a program that’s to provide HIV/AIDS medication, antiretrovirals, for individuals who are at need. The need is greater than the funds. So even in a resource-rich country, where we have the tools, I want to say and believe we have the will, there are individuals on the waiting list for medications.
MR. HILTON: Over 8,000 of them, as a matter of fact.
MS. JOHNSTON: We spend more than any other country per person on healthcare, and yet the CDC’s numbers yesterday revealed that only 28 percent of people with HIV in this country actually have their virus under control. There are a number of reasons for that.
First of all, only four out of five people know that they’re HIV-positive; One in five people who are HIV-positive don’t know it. Therefore, we have to increase our testing efforts. Out of the people who do know that they’re HIV-positive, only 50 percent are receiving medical care. We need the resources. There are reasons why people who know that they’re HIV-positive are not getting medical care. We need the resources and the structural support to get people into care and to keep them in care. Once you’re in care, then there’s a doctor-patient decision as to when to start anti-retroviral therapy, so that accounts for even fewer people who may be on antiretroviral therapy even if they are in medical are.
And so you’re left with this number; 28 percent of people who are HIV-positive actually have their virus under control. And yet we have the resources and the technology for that number to be at least 70 percent, if not more.
QUESTION: Hi. I’m sorry. I’m Nadia Neophytou. I’m from South Africa, from Eyewitness News. I just wanted to ask – I mean, you were saying with the country being so influential, surely others look towards America as the kind of – for inspiration, in a sense. What kind of impact do you think that has on the rest of the world, how they see this country’s response to the crisis, the disease?
PARTICIPANT: I think that the United States has taken a significant leadership role. I think PEPFAR is an astonishing and – as someone who works in domestic HIV and AIDS, I think PEPFAR is an appropriate use of resources. I think that one of the other successes is really looking at stigma and looking at getting both those individuals who are most impacted by the disease to be in the leadership. So we have on PACHA, the President’s AIDS Advisory Council, gay men who are, in fact, very highly at risk for the epidemic. We have women living with HIV who are on the President’s AIDS Advisory Council. And then a lot of the work that we focus on – and I think we all feel we’ve had some success in – is around addressing stigma. Stigma and poverty continue to fuel the epidemic, whether it’s in Kayalisha (ph) in Haiti, or in Bedford-Stuyvesant, Brooklyn.
MS. JOHNSTON: I think the United States – I’m speaking from a research perspective now. The National Institutes of Health, which is the main funder of biomedical research in the U.S., is also the largest funder of research around the world. And I think there have been some very significant research studies that have been conducted in cooperation, certainly, with South Africa, but also with Thailand and Brazil and other countries in Africa. And these are studies that have really pointed out to us some of the findings that I’ve even told you about, the ways in which antiretroviral therapy can be used to reduce the risk of transmitting HIV from a mother to her child, the ability of antiretroviral therapy to protect a person who’s not yet infected, to protect the partner of a person who is infected. These are all studies that have been funded significantly in the U.S. but have been conducted with partners around the world. The question and the challenge is not to generate – well, it’s a significant challenge to generate those research findings, but then for that to be meaningful, we have to translate that into implementation. And that really is a challenge.
QUESTION: Wanted to ask two questions. Glenville Ashby, Trinidad and Tobago Guardian. First is the degree of cultural resistance you get in places like Uganda and certain parts of Africa, and the political implications of that. And two, to what degree traditional and tribal medicine is inconsistent with the more orthodox antiviral treatment that you are advocating.
MS. JOHNSTON: I believe – and (inaudible), I think, will correct me if I’m wrong – I believe it’s in Kenya or – is it Kenya where parliament is discussing outlawing and illegalizing homosexuality? This is obviously something of great concern, not only to amfAR, to everybody at this table, I’m sure. The problem with – stigma is a terrible thing, but having behaviors actually outlawed and punishable even by death penalty only serves to drive the epidemic further underground. It serves to drive the people you’re trying to reach out of your reach. You’re unable to reach them, you’re unable to provide the services even that you have at hand, and you’re really only going to fuel the epidemic further, because nobody will want to come forward and be tested, nobody will want to go onto antiretroviral treatment, for fear of being accused of conducting illegal activities.
We’re very concerned about that, and that’s exactly why amfAR has the MSM program to support – and we do have programs in those very regions of Africa to support advocacy that those communities can undertake for themselves, ultimately with the goal of reducing stigma and even changing laws, such that they are based on research, sound research findings. These are efforts that we’re actively undergoing.
As for your other question, in terms of how traditional medicine may either be consistent with or counteract what science has found, I think we’re all familiar with the example of the Government in South Africa, who for a long time advocated that people should not take antiretroviral therapy and that instead of that, they should be eating beetroot, and I forget what the other vegetables were.
PARTICIPANT: Olive oil and potatoes.
MS. JOHNSTON: Dr. Beetroot, I think, was her nickname, I guess. And what we also know is the meantime is that hundreds of thousands of lives were lost as a result of that. Had antiretroviral therapy been available in South Africa to the people who needed it, and to the people who they even had resources to give it to, we could have saved hundreds of thousands of lives. There has been a change in the mindset of the government since then, and so antiretroviral therapy is available to more people.
QUESTION: Are you saying that traditional medicine is inconsequential?
MS. JOHNSTON: I’m not saying traditional medicine is inconsequential. What I think we need to be is cautious and worried, in fact, in those cases where it actively goes against what we know promotes the survival and health within the context of HIV.
PARTICIPANT: I think the reality is that we don’t advocate that people who are diabetic should not take insulin. However, should they have additional – whether they are herbal or other types of supports that are going to help them, I mean that’s a good – that’s good medicine. And one of the things that I think we’ve been – we’ve seen some success within the States is really partnering with some of the more traditional --
QUESTION: Alternative medicine?
MR. HILTON: Not necessarily.
MS. HILL: Well, let me finish. Partnering with some of the more traditional communities and working with the communities around both HIV/AIDS education and support for people living with HIV. What – who am I talking about? The faith community. So – and I – whether one necessarily believes in alternative medicines or not or whether one believes in prayer or not, that we strongly advocate that autonomy, resiliency, and independence are what individuals need in order to sustain them. And if having acupuncture or eating a macrobiotic diet is going – or chanting or praying is going to help you, then you should do it. But at the same time, we also connect those individuals to care. And I can say that as a person who is a public health person, but if a minister says it, if someone who is a macrobiotic specialist says it, it has more meaning. So the point I’m making is that we have seen a lot of success in partnering with individuals who either are promoting other treatment supports, but are not saying don’t get tested, don’t take medication, don’t know your status.
MR. HILTON: And that’s definitely the kind of messages that we bring home to our leadership in the 11 cities and other places in the United States where we have established affiliates. We have – we bring together people who don’t have a history or a background in public health to address HIV/AIDs prevention, treatment, and care – clergy persons, media representatives, philanthropic foundations, corporate business leaders and civic professionals and so forth and so on.
We understand that there’s nothing monolithic about communities of African descent. I always say we are organizing communities of African descent as opposed to organizing African American communities. I’m born of a mother who was born in Antigua, as a matter of fact, so I understand that there are cultural differences even within the black community and that you have to be respectful of those different traditions and different cultures and so forth and so on. And it presents definite challenges to us as we try to develop effective messages around HIV/AIDS prevention, but as long as you show respect and you have dialogue and you bring individuals into your collaborations and that you are facilitating these kinds of conversations, it makes it a lot easier. But it’s a challenge. It’s a challenge.
QUESTION: I have next question. Nikola Krastev from Radio Free Europe, Radio Liberty. Just want to follow up on your statement that the United States is a country that definitely has resources to contain the epidemic and the crisis. So can you speak, all of you briefly, on the subject how the world financial crisis in the West last three years affected your capacity to provide services? That’s my first question.
And the second one relates to your statement that the United States spends most – of all countries, most on healthcare. That’s true, but in terms of percentage, it’s actually triple what is compared to Western European countries for pretty much the same amount of services. So if you can provide some numbers, how much does it cost to treat the person who’s affected in the United States compared to, if you have the data from, say, like France, Germany, developed Western countries with the same results? Did I express myself clearly?
MS. JOHNSTON: I think so. I think so. An (inaudible) therapy regime and costs in the United States in the neighborhood of $15,000.
QUESTION: A year?
MS. JOHNSTON: Yes. It depends very much which medications you’re taking, and what dictates the medications that you’re taking might be your own resistance profile, for example.
QUESTION: Are we talking about brand names or generics?
MS. JOHNSTON: Brand names in the United States, yes.
QUESTION: Brand names. Okay.
MS. JOHNSTON: Yeah. Now, there are countries around the world where other organizations have negotiated obviously lower cost regimens – laces in Africa, certainly, for example, where generics are being provided and where even the prices are being supplemented to where you might be able to treat a person for more in the range of $100 to $200 per year.
To be honest with you, I don’t know what the cost is in Europe, but I don’t know of any reason why it would be very much different from what it is in the United States. The real question is is how many people have insurance, right? I mean, in the United States not everybody has insurance, whereas in most of Europe, there’s what we called socialized medicine, where people are covered. And so they – as an individual, you probably have very much lower out-of-pocket cost.
I mean, we know – we all certainly know that in the United States, there’s a real crisis of health care, in terms of people’s ability to access it. And I think it’s probably true, and I think my colleagues are probably better qualified to speak to this, but I think that the people who are most susceptible to HIV infection probably have a higher rate of lack of insurance than do – than if you just kind of took an average of the whole United States.
MS. HILL: So I guess the thing I want to say that – poverty is probably universally correlated with high rates of HIV, whether it’s, again, in the United States, in Europe, or in other countries. I think that around both the world financial crisis and specifically around the challenges – economic challenges in the United States, they have absolutely impacted our ability as a community, as a society, and as an organization to do outreach. We are about 50/50 funded, so we have – GMHC gets about 50 percent of our funding from the government, we – grants and proposals, very competitive funding. And we get about 50 percent from the private sector.
We have seen a real decrease in what’s available in terms of the private sector. And so – and government had increased some of their availability, but even in this year, we’re seeing that there’re less government grants, and we suspect that by the end of this year and going forward, that there’s going to be less government grants. And I’m not entirely sure that the – and civil society and that the for-profit sector’s going to take that up. So we really are challenged by having the resources to do what we need in order to get to zero.
QUESTION: Can you give us, like, some specific numbers about the decrease that you just mentioned, compared, for example, to three years ago, before the crisis? Just approximately.
PARTICIPANT: It’s challenging to – if I think a minute, while I can give you some specific – because I’m thinking about my budget, which is one budget. I will tell you that in New York State, that the New York State Department of Health probably lost about $18 million – so I don’t know what percentage that is – of their funding this year.
QUESTION: For AIDS only?
PARTICIPANT: For AIDS only, I’m talking about. Right. And that all of the organizations that are doing services in New York State received some percentage of cut this year, relative to – again, the New York State AIDS Institute provides a significant amount of support for, again, New York State organizations. It is GMHC’s largest government funder. So if they have a 8 per cent cut at a time when I have a 20 percent increase in clients, that really represents almost a 30 per cent deficit that I have to cover. So –
MS. HART: I would say for us, it’s the same. Our core funding is from the AIDS Institute, and – so we had a cut in our core funding. We also had a federal grant that we had for 10 years. It was a mobile outreach grant that allowed us to go out and do testing in the community. It was one of our mobile outreach grants that was – it ended and it wasn’t re-solicited, and they don’t know if that money is going to be available again.
We have a CDC grant; there is a percentage of cuts to our CDC grant, this at the time when we’re getting more people calling us for services. We were talking before we all came out here, and for some of our clients, because they are living in poverty, HIV is just one of the issues that we have to deal with. Many times, they call through our hotline, and it’s really to – we have a meals program. We deliver food to their homes, and many times it’s to get on the meals program.
Last year, we had to cut our meals services to their minor dependents, because we had a cut in our New York State meals program. So as our clients are experiencing more and more poverty, more and more social issues, we get 15 new infections through our hotline a month. And so we are really feeling the – really, really feeling the –
MR. HILTON: We provide technical assistance to over 68 houses of worship and 30 community-based organizations across the five boroughs. With over the past six months, we lost three staff members, which has forced me to wear yet another hat on top of the million and one hats I was wearing anyway. We lost our major grant from the Centers for Disease Control and Prevention. We’ve seen cutbacks and reductions in our grant through the New York State Department of Health AIDS Institute. We’ve received reductions in our funding from – through the New York City Council, our communities of color faith-based initiative.
And so, certainly – also, too, let me add an additional component to that. Our current political environment does not help it either, because it’s just become so politicized, it’s become so hard to sort of break through the hardened partisanship that’s occurring in Washington DC in particular, but all over. To get people to understand that this is a public health crisis that needs to be addressed is not Democrat or Republican, it’s not liberal or conservative, but it’s so very, very hard, because more often than not, people take a look at many of these budgets that support our programs as political pork barrel, or just things that can be dispensed with willy-nilly, without really understanding that when you make significant cut like that, it definitely impacts a provision of and quality of service delivery to people who at greatest risk and who need it the most.
MS. HILL: In this fiscal year, the New York State legislature suspended all of its legislative grants that it gives to communities – all communities. They suspended them. The state is having some financial challenges. But I’ll – specific to GMHC, we use that funding for outreach, we use that funding for testing, and we use that funding for some of our older adult programs.
MS. HART: And it trickles down to the counties, as we also get county funding from Nassau and Suffolk County, and that funding has been cut along with the legislative add-ons, as well.
PARTICIPANT: So what’s the good news, though? (Laughter.)
MS. HILL: So what I want to say is that, because we have challenges relative to some of these funding, we’ve always been a volunteer-assisted and supported organization. I think that probably many AIDS service organizations are. We have about 900 regular volunteers, and a regular volunteer is someone who comes at least an hour every two weeks. And we have 2000 special events volunteers. so people who might come just for – to serve Thanksgiving dinner, who might come to help us with AIDS Walk. We have volunteer attorneys who help with housing quarter, who help with – what’s that – bankruptcies, because we’ve gotten an increase in requests for bankruptcies. So the way – and we are soliciting and looking for increasing our volunteer pool, because we need to. And we’re grateful that there are people who continue to see HIV and HIV support as an area that is important to volunteer in.
MS. JOHNSTON: And we also have a peer component, so that we have people are infected with the virus, and once we – they get into a good place, then they want to give back. And so we have a lot of peers who are going out and doing outreach, and connecting with clients, and bringing them into us, people to get tested or to get case management services.
QUESTION: One question. I’m Jacob Margolies with Yomiuri Shimbun; it’s a Japanese newspaper. And you talked – I think you mentioned rolling out treatment programs in Asia, and I’m wondering if you could just give a little overview of the situation in Asia, maybe Southeast Asia, East Asia, South Asia.
MS. JOHNSTON: Right. So as I mentioned, the office is in Bangkok, but we have, I believe, something in the order of about 30 sites throughout Asia that range geographically from India in the north through China in the south. At least for some time, we had a program in Papua New Guinea. Probably the southern-most point now would be Thailand or Vietnam. I believe it’s 15 or 17 countries throughout Asia.
And amfAR wanted to do something in Asia for a couple of reasons. As we know, Asia is certainly the region of the world that has the highest population. And although prevalence in Asia is relatively low, with some exceptions in some countries, certainly within specific communities, because of the population of Asia, even a very low prevalence rate actually is a huge number of people. And what we needed to – for ourselves, what we really needed to make sure of is that the epidemic in Asia was not going to become a repeat of the kinds of prevalence rates we were seeing already in Africa, for example. And certainly a lot of people were already doing a lot of work in Africa, but nobody was really paying attention to Asia.
So Asia has a huge population, and it’s also economically very important. HIV is a disease that strikes people in their economic prime, and so it was going to be – had we not stepped in there to do something about keeping prevalence rates relatively low, it really had the potential to be very disastrous around the whole world. And so there are some – there’s a great diversity, as you know, in Asia in terms of the wealth of the different countries. So a country like Japan certainly has access to all the brand name drugs, and that’s what would be used in Japan, whereas other regions like Vietnam might be using generics. And so there’s really a need to know how do those compare; are they really the same quality; what kinds of regimes work best in different populations?
Because they’re in Asia, they’re likely to be infected by different kinds of opportunistic infections than what we see in the United States. And let’s face it. We know the most about HIV in the United States and Western Europe because that’s really kind of where most of the research has been done. But that’s not to say that we know what HIV and AIDS disease looks like in Asia.
And so there was really a huge need for us to gather that information and to make sure that we knew how we were treating HIV in Asia best, and it also creates an opportunity for people within that region to share information with one another on best practices and to make sure that everybody really knows how to best unroll antiretroviral treatment, as well as the treatment of the other associated diseases within their region, something that is cultural specific, region specific, population specific. And really, we were kind of the first and largely only kind of large network in Asia doing that kind of comparison.
QUESTION: I have a question. I’m Natasha Israni with an Indian news network called Times Now, and I was very amazed by one of the statistics you gave out earlier, which is that you’re seeing a reduction in two regions in the world, which is North America and Europe. I was wondering if you had any sort of approximate figure as to what the difference is in the rate of new infections in Asia versus North America.
MS. JOHNSTON: That – I’m sorry, I don’t have those numbers to hand. I can tell you that there’s roughly 50,000 new infections per year in the United States, but I don’t know what those numbers are. I can certainly get you that information. It’s available in the UNAIDS Report.
QUESTION: And also just a follow-up to that, I mean, you’ve talked a lot about (inaudible) ingesting these (inaudible), but how in America there seems to be, as you said, a blackout of information on this. But what is the reason really for the big difference in seeing new rates of infections in countries, like Asia, where you think there’s more poverty in general and perhaps in the rural areas also less so information on the subject versus such an advanced country like the U.S.?
MR. HILTON: First of all, I think that we make a lot of assumptions about what people know as opposed to what people don’t know. And let me just tell you that what amazes me 30 years into this epidemic is not what people know, because we know a lot, but more importantly for me what people still don’t know about this epidemic. When I tell you that it has become so difficult for us – and I don’t mean to pick on your colleagues in the American media, but it such a struggle to just get focus and coverage to just – because we recognize that American media, media all over the world, is an excellent resource for the dissemination of information.
So if people aren’t being told, how do they know? If people aren’t talking about it, how do they know? If you don’t have prevention messages that are out there the way they were in the so-called first wave of the epidemic – and we’ve seen that talking about the cutbacks and so forth and so on, that so many of those programs that we rely on to get information to our communities are the first causalities when these cuts are made and when these political decisions are made. So you’ve got thousands upon thousands of people – Dr. Hill, in our conversation prior to coming into the room, talked about the fact that you have approximately 1.2 million Americans who are living with HIV who don’t know their status. And I – I mean – I’m sorry, 1.2 million Americans living with HIV, and approximately 20-to-25 percent of them don’t know their status. That’s a lot of folk. You also say that there are about 500,000 or so of those 1.2 million that are of African descent here in the United States. So that’s a significant issue and you say to yourself, despite all that we know, how in God’s name can these numbers be so high?
And that’s the challenge; and so when I began my comments with where’s the noise, we know this. We sit around these tables and – wonderful, it’s great to see my colleagues. I love and respect them dearly. But for the most part, we’re preaching to each other. We’re preaching to the choir. These are things we already know. The importance is getting this information and knowledge that we know and that you know out into the community, so that people can get a better understanding of what this disease is and what it isn’t and find ways in which they can get the resources and whatever help they need, to ensure that they get the treatment and they get their care, and if they’re negative, how they can stay that way. It’s so important.
MS. HILL: America is a wonderful country and I am actually proud to be an American. I am. (Laughter.) I think the challenge, though, is that there are enormous disparities in wealth, and I think there is a presumption sometimes that all Americans are wealthy, and all Americans have health care, and all Americans can, in fact, get what they need, whatever that is. And, while that is probably true for many, many Americans, the individuals who come to LIAAC or come to GMHC or come to Services – our clients at GMHC are getting, are living below the federal poverty line, 85 percent of them.
And so this whole issue of how the world sees America – I was in South Africa last February and talking to someone in the hotel in management and he said, well, do you live next door to Oprah? No, I don’t, okay. (Laughter.) And so I mean it’s – and we can joke about it, but I do think that that image is one that challenges us even here in America, because then the messages of who needs – we’ve been talking about this for 30 years. Doesn’t everyone who has a television now know about HIV and AIDS? Well, I will tell you, a couple weeks ago I was getting my hair done and I go to small salon, it’s a mother-daughter salon in Brooklyn, and the daughter’s about 20 and she was doing my hair and I was kind of having this conversation with her, kind of quietly, because her mother was three chairs away, and how is it dating, and how is it meeting people, and when you meet somebody, how do you bring up the HIV issue? And she was getting ready, I guess, to tell me, and her mother shouts from across the floor, “She doesn’t have to worry about HIV; she has type-B blood.”
PARTICIPANT: Oh, good lord.
MS. HILL: This is, okay, in America, a businesswoman. And so I dispelled that myth and said, “Oh, I’m in the wrong chair. I need to be in your chair.” (Laughter.) But again, I mean, it’s that kind of challenge where there’s a presumption that in the place that has led the HIV in research, has led HIV in advocacy, has led HIV in prevention and care interventions, my God, everyone should at least know the basics.
MR. HILTON: And also there’s a disease risk perception. And to Dr. Hill’s point, I tell people all the time that even folks who are clad in Chanel and can afford designer bags and live in luxury penthouses are getting infected with HIV, too. The fact is that that there’s a skewered – and it’s – and I’m sure it’s worldwide, but I find that oftentimes in community in our everyday work, in my everyday life at the National Black Leadership Commission on AIDS, there’s such a skewed perception about who is at risk for HIV and who is not, because it’s not always the usual suspects, we tell people. It’s not always, oh, well, I’m not gay so that doesn’t apply to me. Or I’m not an intravenous drug user so that does not apply to me.
The fact is that you’ve got people who are heterosexuals, people who go to church every Sunday, who are upstanding citizens in community, who are becoming infected with HIV and other sexually-transmitted infections every single day. So I mean, that’s the challenge; but again, until you get that information out there and you present those kinds of images so that people are getting that information, who knows?
MS. JOHNSTON: I’m going to add – can I just add one thing to this, that – and I think everybody would agree – I think there is a degree of complacency, too. Antiretro – and I’ll tell you the reason why this worries me. Antiretroviral therapy has been relatively widely available in the United States since 1996. And so people have lived for a fairly long time – 15 years – knowing that antiretroviral therapy is out there and that it does relatively well. And I think that people then think – see HIV as a less risky disease to have. And I’m gonna – so when antiretroviral therapy became more widely available in Africa, which was a lot more recently than that – let’s say it was only seven years ago – that the rates of adherence to antiretroviral therapy were incredibly high, and a lot was made in the scientific community about look how high the rates of adherence are.
And I would argue, I think that because it was new and because people saw this hope for extending their lives, that they were very enthusiastic about taking it. And people made a lot, too, of the fact that the adherence in Africa in, say, 2005 was rivaling the levels of adherence you saw in America in the late 1990s. And I think that has dropped off as people see it as less important, or see that they have backup, or you know there’s always going to be some therapy there. And I worry, and I’m not saying this on the basis of data at this point, but I do worry that as antiretroviral therapy becomes more widespread around the world, that we’re going to see the same phenomenon that it becomes more normalized, people rely on the idea, well, we have antiretroviral therapy, it’s not a big deal, and people don’t think of it as extraordinary anymore. And I can imagine circumstances under which we’re going to see a resurgence, because people aren’t going to take it as seriously anymore.
MR. HILTON: And I hate to be the gloom and doom person here, but also in the way these drugs are marketed – I’m always amazed when you look at the billboards and so forth and so on and you see these beautiful, handsome people with such beautiful white teeth, they’re climbing mountains, they’re bicycle riding, they’re swimming, and I’m saying to myself, that doesn’t look like – nobody in my community can relate to that. But still, it lends itself credence to this false impression that people have about where we are in this fight against HIV/AIDS.
Not that – again, we are – thank God, thank God, thank God for the scientific research, thank God, thank God for the availability of these medications, but it’s not all sweetness and light with these medications either. There are some really nasty side effects. Although we’ve made some progress, they don’t always metabolize in the same way with everybody.
So, of course, what Dr. Johnston would be able to take and sort of benefit from, if I take the same medication, it’s going to have a different impact. The same thing between Dr. Hill and I, and we are both of African descent. So there are still a lot of things, and until and unless you really drill down and get to the core of this, how would you know?
QUESTION: To follow up, Natasha’s question on India, being a former (inaudible) question, but I want to break the norm, India has been always in denial that they have got HIV and AIDS for several years. There have been a lot of question of the United Nations, and India refused to join those conversations until recently, about (inaudible) years ago. But day before yesterday, the UN report came out and (inaudible) says India has reduced 45 percent HIV in last seven, eight – short term. Do you have any information on that?
And follow up Dr. Hill’s question, when you mentioned that you were trying to eradicate HIV, is it the United States or worldwide, and how far you have to reach your goal?
MS. HILL: Well, you know the World AIDS Day theme is not just limited to the United States. So the issue of getting to zero is one that we have the capacity to do. I have much more familiarity with both what I’m doing at my agency and what’s happening in the States, but the examples given around ending mother-to-child transmission, we can do that worldwide. It will take resources, but we know how to do it. Getting men who have sex with men and gay men, whether they’re in Bangkok or Thailand or whether they’re in South Africa or whether they’re in Chelsea in New York, getting gay men to reduce their risk, reduce community viral load, we know how to do that. But it will take resources and dedication.
So I think that, how far have we gotten? We believe that without the prevention efforts and the advocacy, we would see – this is not a scientific number – but we believe we would see many, many more, if not double the cases, if we had not had effective prevention in the United States. There was some challenge around all the money we’ve spent in prevention in particular, how come we haven’t already got to zero. And I think we’ve already talked about some of those issues.
The economy of HIV and AIDS is one that is often complicated. And I was actually on a panel a few weeks ago with a health economist, and it was fascinating. And some of your questions today might be something for us to think about having the next go around. But I think that the point that I was making, and I’m being redundant, is that we have effective medications, we have effective prevention measures, we know what people at high risks of HIV need in order to reduce their risk and minimize their risk, but what we need is both the resources – I think the will is there; I think we need the resources. And that’s true in the United States as well as outside in other countries.
MS. JOHNSTON: In terms of what we did see in large parts of the world in terms of reductions in HIV, there have been reductions in new infections and there have been reductions in deaths, and reductions in total numbers of people infected with HIV. And those three things can actually be very different. So there is a combination of factors going on.
In terms of reductions in the total number of infections, some part of that would be due to deaths of people with HIV. Certainly, from the days when antiretroviral therapy was not as widely available, and so when you see kind of carryover of – there’s a lag of a few years when you might see the effect of that. But I think there are a lot of regions, on a more hopefully note, and what I think contributes to these numbers more, in the last few years I would – more recently than the last 10 years, let’s say since the mid-2000s, there’s really been a concerted effort around the world to get antiretroviral therapy out to a lot more people, and there have been bilateral agreements made where countries can afford to buy antiretroviral therapy for more of the people living in those countries.
And concomitant with that, you’ve have testing campaigns and awareness campaigns, and I think these decreases that you see now are the direct effect of those efforts. And I think it’s – it gets back to my complacency issue, I guess, where – when these are new efforts, they hit people’s attention a lot more and you can see those effects quite dramatically.
And we had very similar things happen in the United States. After antiretroviral therapy came along, there was a dramatic drop in the rates of death at that time. But what you see over time, and I really hope this doesn’t happen, and I think resources and efforts need to be made to make sure that it doesn’t – I think there is a risk that over time, as this information becomes more the norm, that you may see a less dramatic effect over time. But I think that what we’re witnessing at the moment, when we see these worldwide decreases, be they in deaths or new infections, is absolutely a direct result of the wider availability of antiretroviral therapy, and what goes along with that, it’s the inevitable messaging that goes around getting that out to people.
MODERATOR: I’m looking at the clock. (Inaudible.) We have to prepare for our DVC with Washington. So at this point, I’m going to say thank you to everybody. And if you have any questions that you want to follow up with, if you’re going to be around for a few minutes, we can do it outside.
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