A journalist by training, Meline Toumani shocked friends and family by moving to Turkey and embarking on a journey to understand a people and a country she'd been taught were the enemy. The result is "There Was and There Was Not," part political history, part deeply personal memoir.
The world’s leading AIDS researchers and activists come to Washington next week for the first International AIDS Conference held in the United States in 22 years. With deaths from AIDS down but HIV infection rates still high, we explore how the political, social and medical issues have changed in the three decades since the disease was discovered.
- Christine Campbell Vice President of National Advocacy and Organizing, Housing Works
- Cornelius Baker Longtime Washington AIDS advocate, former executive director of the Whitman-Walker Clinic, member of the Presidential Advisory Council on HIV/AIDS
- Adam Tenner Executive Director, Metro TeenAIDS
MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your neighborhood with the world. When AIDS was discovered in the early 1980s, it quickly became thought of as a gay men's disease that was swift and fatal. Around the country, activists demanded approval of drugs to halt the virus. They marched on city halls and on Capitol Hill. They organized AIDS walks and AIDS awareness days. They fought the stigma of HIV.
MR. KOJO NNAMDIFast-forward 30 years, and HIV is no longer a death sentence, thanks to drugs that keep the virus in check. Infection rates are steady, though still high in the District of Columbia. And President Obama has approved a national AIDS strategy. As delegates arrive in Washington for next week's International AIDS Conference, some activists are still planning demonstrations, but others now lead nonprofit groups or government agencies working on AIDS prevention and elimination from the inside, so to speak.
MR. KOJO NNAMDIJoining me to explore this evolution of AIDS activism is Cornelius Baker. He is a longtime Washington AIDS advocate, former executive director of the Whitman-Walker Clinic and a member of the Presidential Advisory Council on HIV/AIDS. Cornelius, good to see you again.
MR. CORNELIUS BAKERGood to see you, Kojo. Thank you.
NNAMDIAlso in studio with us is Christine Campbell, vice president of National Advocacy and Organizing with Housing Works. Christine Campbell, thank you for joining us.
MS. CHRISTINE CAMPBELLThank you for having me.
NNAMDIAnd Adam Tenner is here. He is executive director of Metro TeenAIDS. Adam, how are you doing?
MR. ADAM TENNERGood. Thanks.
NNAMDIYou too can join this conversation. You can call us at 800-433-8850. You can send email to firstname.lastname@example.org. How has AIDS touched your life? You can send us a tweet, @kojoshow, or simply go to our website, kojoshow.org, and join the conversation there. Do you think the United States is devoting enough resources to fighting AIDS? Should it be a higher priority? 800-433-8850. Cornelius, you moved to Washington, it's my understanding, in 1982. How did you become involved in AIDS advocacy, and how was the political climate in Washington at that time?
BAKERWell, AIDS had just been recognized and reported the year before I moved to Washington. I came here to do my internship at the Kennedy Center, thinking that I had a life ahead in the arts, in culture. And, of course, AIDS took a terrible toll on artists very early on. And so right from the beginning, you know, at a very young age, I was watching the deaths around me. I had good friends who started dying, a partner who died.
BAKERAnd so I realized that it was important to become politically active, and I did. I started doing fundraising for groups like Whitman-Walker Clinic. I was at that first Lisner Auditorium event and heard the call to action from Jim Graham and others, and just became more and more involved and went to work for the City Council here in Washington. I worked on Carol Schwartz's staff, and she was on the health committee. And we were in the position to help create the city's response to AIDS.
NNAMDIGiven the early stigma that was attached to AIDS and the fact that you came here to engage in a career in the arts, how difficult was the choice for you to decide to become an activist?
BAKERYou know, I guess I have the, you know, good fortune of having been raised as a black male and having come from a family from the South that -- you know, you don't have such choices, and that when your faced with life and death decisions and when the people that you love and your family's and your very community's survival is at stake, one does what one has to do.
NNAMDISo you never really felt like you had a choice?
BAKERNo. I just think that there was no choice. Our government was unwilling to respond, and so we had to make the decision to save our own lives.
NNAMDIAdam Tenner, you've been at Metro TeenAIDS in Washington for 11 years now. How did you get involved in HIV/AIDS work, and what does your nonprofit organization do today?
TENNERWell, I originally got involved in the mid-'80s in college when one of our professors passed away from HIV. We were doing -- obviously, that -- and we were outside of New York, and there wasn't even a lot of conversation on this on the campus about HIV, even though we knew there was a risk and we knew people were really socializing in the city and going to the city for fun. So I've really been involved ever since, and I've always been a volunteer around youth issues.
TENNERAnd so, for me, it sort of -- both working with young people living with HIV and making sure that they got connected to care but also that youth could be part of the solution to any epidemic just sort of, you know -- like Cornelius, it didn't seem like much of a choice, more like a calling or direction.
NNAMDIChristine Campbell, you've been an AIDS activist, it's my understanding, for more than 20 years. What motivated you and others in the early days of the epidemic?
CAMPBELLWell, actually, I started more as a social justice activist. I was running housing programs for people with special needs before, actually, I started -- went to Whitman-Walker Clinic and started running their housing program, Schwartz Housing Services. And it was then that I actually started really getting into advocacy and activism and really pushing for the rights of people living with HIV and AIDS, making sure that people living with HIV and AIDS were included in the decisions that surrounded their lives.
CAMPBELLSo it really came for me from more of a social justice perspective that it's brought -- because I've -- we were -- I've always looked at AIDS more than just a public health issue. It's about a -- it's a social justice issue. It's an economic justice issue. It's a human rights issue as well.
CAMPBELLSo I think we really need to look at the broader context of ending the epidemic. Treatment and prevention are extremely important but so are people's social and environmental situation that allows them to thrive and be able to deal with treatment, be able to accept the treatment, be able to thrive on the treatment and the prevention that's available.
NNAMDIIn case you're just joining us, we're having a conversation about the evolution of AIDS activism and inviting your phone calls at 800-433-8850. You can send email to email@example.com. Which AIDS walk or AIDS march do you remember best, and did you participate in it? What role do you play now? 800-433-8850. When we first knew about AIDS, Cornelius, in 1981, it was most prevalent then, it seemed, among gay men. How did that shape early participation in the activist movement, and when did the movement broaden out beyond the gay community?
BAKERWell, you know, obviously, the very first report on HIV in June of 1981, which was entitled, you know, "Cases of Pneumocystis Carinii Pneumonia in Five Gay Men Living in Los Angeles" really shaped the picture of what people thought. That report was followed very shortly thereafter, an MMWR, the "Morbidity and Mortality Weekly Report," from the CDC showing that there were cases of Kaposi's sarcoma, a rare cancer, developing in gay men in New York.
BAKERAnd so very early, the frame of the epidemic became that it was gay men, and the images and pictures where white gay men. Now, very quickly, we knew within a year or two that there was a disproportionate impact on black gay men, for example. And right after that, we knew that the epidemic was affecting Haitians and injecting-drug users. And then we got in the mid-'80s the first cases among women outside of Haitian and injecting-drug-using population.
BAKERBut that very early image of HIV/AIDS as a disease of white gay men stuck, and part of the reason it stuck is the unwilling of our national leaders and particularly the president to speak clearly and to move into action, that I believe if President Reagan had spoken quickly and swiftly about this epidemic, it would have changed how people perceived it.
NNAMDIIn 1996, a cocktail of antiviral drugs was introduced as a treatment for HIV, though not a cure. The drugs allowed people to keep the virus in check by taking a daily dose of medication. How did the end of AIDS as a death sentence, so to speak, change the nature of activism, Adam Tenner?
TENNERWell, I think for those of us who were engaged early on, you know, as Cornelius talked about, the experience of watching our friends die so quickly, you know, as a young gay man really coming out and meeting all these people who you may not meet again, when somebody went in a hospital, that meant something. That meant that you were probably never going to see them again.
TENNERAnd I think that there was a reality -- and interestingly -- although I think it's more talked about in the gay community -- the injection-drug-user community had a very, very similar pathway where, for a lot of those folks in the early days of the epidemic, they saw massive amounts of their friends die very quickly. And so if you talk to those of us who saw the early days, gay men, injection-drug users, we all have the experience of what we saw changing how we treat HIV. HIV not being a death sentence has really changed how we perceive it.
TENNERSo there's not the sense of seeing somebody on the street with Kaposi's sarcoma. You just don't have that kind of impact, and so the reality of how it applies to me, whether I'm at risk, whether I think I'm going to die of it, you know, famous people having HIV and doing really well and we can't get them to talk about, you know, the negative side effects of the drugs that they're taking. You know, these take a toll on us able to really convince people that we are all at risk, and in Washington, D.C., with our high HIV/AIDS epidemic, we are all at risk.
NNAMDIWell, it occurs to me that because of the environment in which the AIDS virus is no longer seen as a death sentence, does it make it more now difficult to raise awareness in this environment when not only has the movement become somewhat more mainstream, you don't see demonstrations and the like anymore, but also the fact that it's not a death sentence make people -- makes people more careless and therefore maybe not as open to awareness and education as they should be, Christine?
CAMPBELLAs I travel around the country doing national advocacy and organizing, I am continuously surprised at how many people still are saying this is not about us, not about me, that they're still -- this is about them, and we're now in third generation. I have friends who are adults who have gone to college who were born HIV-positive. So it is about everybody. So it has made it really challenging in terms of people stepping back and thinking about it as the other as opposed to how it affects their life, their -- our communities and how we can really make a difference.
CAMPBELLSo then if you then take a look at advocacy and activism and say, how do we push the envelope, people are comfortable, and people don't change unless they're uncomfortable. So how do you show that there's some real dangers and some real risks still out there that we still need to address as vigorously as we did back in the '80s if we want to continue to get to that place -- having an AIDS-free generation?
NNAMDIIf in fact we're going to do that, Cornelius, what is the significance of the international conference next week coming here?
BAKERWell, the conference is an opportunity. It's an opportunity to retell the story, to remind people where we were and also where we are now. We made enormous progress, and we shouldn't deny that progress when you know we have a safe blood supply and think about how many hemophiliacs and people who had surgeries in the early '80s died needlessly. We have gone from a country that a decade ago had 2,000 children being born with HIV to almost zero children being born with HIV.
BAKERWe have now the ability to give people with HIV a near-normal lifespan despite the difficulties of the side effects, et cetera that we have. And we have new prevention technologies. But our work isn't done. We need a cure, and we need to stop the flood of new infections -- the 50,000 that occur every year here. It's also an opportunity to remind ourselves of American leadership. These progresses have been made mostly through American leadership, especially the development of new drugs and prevention technologies, and that there are 9 million people in poor countries around the world that have access to treatments, and that their families are thriving and their countries are now back on the rebound is the result of American generosity.
BAKERAnd that's the story we get to tell for 10 days, and hopefully, the American people will be able to take that in and understand that we do have a persistent crisis, particularly in poor parts of the world and in poor parts of our country and among certain populations like gay men and among black people, and that they will respond to it and say, yes, we must continue our progress, and we must do more and see it to the end. We must win this victory.
NNAMDIGlad you brought up leadership because that's where I'd like to go next, but first, we've got to take a short break. That shouldn't stop you from calling. We're having a conversation about the evolution of AIDS activism. So you can call now, 800-433-8850. If you have already called, stay on line. We will get to your call. You can also send email to firstname.lastname@example.org. I'm Kojo Nnamdi.
NNAMDIThe International AIDS Conference comes to Washington next week. We're having a conversation today about the evolution of AIDS activism with Christine Campbell, vice president of National Advocacy and Organizing with Housing Works, Adam Tenner is executive director of Metro TeenAIDS, and Cornelius Baker is a longtime Washington AIDS advocate. He's former executive director at the Whitman-Walker Clinic and a member of the Presidential Advisory Council on HIV and AIDS.
NNAMDIWe're talking your calls at 800-433-8850. Before we took that break, Cornelius, you mentioned leadership, and for the last seven years, D.C. Appleseed had released an annual report on HIV/AIDS in the nation's capital. Today, it released this year's report, giving the city a B on leadership and mostly A-minuses and Bs on things like surveillance, testing and condom distribution.
NNAMDIIndeed, overall, the report notes that a lot of progress has been made, but things aren't really improving anymore. The city apparently did poorly on public education in the District. As I look at this report, the grade seemed almost identical to the grades of the last few years. And while they are mostly As and A-minuses and Bs, which means that they city is not doing badly, it also indicates that the city is not improving significantly. I'll start with you, Cornelius, and move around the table.
BAKERYeah. I mean, you know, fortunately, now that we've come out of the economic slump that the city was in, we do have great opportunity. I mean, Christine will recall, certainly when I was at Whitman-Walker, our greatest challenge was just getting paid for the services we were delivering. And so as always, you know, calling there a day before our payday and yelling at them and say, we're going to camp out on your staff if we can't get our check.
BAKERAnd so we've come a long way from there and the excessive congressional interference also that we've had. But we are at a real defining moment, and the city has to have robust, energetic leadership to move forward. I'm pleased that the mayor has convened a high-level commission, but that commission has to be empowered to do more. Just this week, Saul Levin -- Dr. Saul Levin was appointed as the interim director of health. He is a very fine young selection, and someone who I hope will just say, we've got to do better. But this city cannot afford to stay stagnant or go backwards.
CAMPBELLSo, look, like you said, the grades have stayed pretty much the same across over the years, yet we still have a serious epidemic here in Washington, D.C. And there are some real interesting things. Like Cornelius says, there's been some incredible improvements. We have not had a new child be born with HIV since 2009. That's wonderful. We have incredible surveillance, HIV testing and being able to collect the data.
CAMPBELLBut one of the things you'll note on this report is they're not even looking at housing. There's over 1,000 people on the HIV/AIDS housing waiting list and over 25,000 people on the low-income housing waiting list, and if we're not providing -- if we're not assuring for people to be in stable, affordable, decent housing...
NNAMDIWhy is housing so important in the context of HIV?
CAMPBELLResearch has shown -- another part of my life, I'm a board member of the National AIDS Housing Coalition, and we've been doing -- sharing research around the importance of housing as a structural intervention for the prevention of HIV as well as intervention for access to care and improved health outcomes. And research has shown that providing affordable, safe, decent housing to people living with HIV and AIDS actually prevents the spread of HIV and actually improves health care outcomes.
CAMPBELLThere is a causal relationship. So, again, it's about looking at addressing the epidemic from a much broader perspective than just a public health issue. So if you're safely housed, you can take your medication. You can have -- you have better nutrition. You have better drinking water. You have a better ability to maintain your health. And then if you just look at Maslow's hierarchy of needs, if you've got those basic needs taken care of, you can then attend to some of the more nuanced parts of your life.
CAMPBELLAnd, unfortunately, if you don't have a place to live, medical treatment is sometimes viewed as a nuanced part, especially if you're a mother with children, you're going to be looking at their primary needs first, and/or if you're in a domestic violence situation, you're going to want to get safe. So we have to look at the epidemic from a much broader perspective, and with all due respect, we're not even looking at some of those elements in addressing the epidemic here in the city.
CAMPBELLSo as -- like we've been saying, is that D.C. has made some dramatic structural improvements in the way we deliver services. One, the data -- the surveillance aid is not going down dramatically. We still have a severe epidemic, and we're not looking at some of the broader issues. And sometimes when some of us activists take that to the city broader than just the Department of Health -- it has to be a citywide initiative -- we're told that something like housing is too expensive to look at.
CAMPBELLIt's a very challenging issue. But if we don't take it on, then it's not going to be addressed at all. Somewhere we have to look at the broader issues if we're going to really end the epidemic.
NNAMDIAdam Tenner, what do you see when you look at this latest D.C. Appleseed report?
TENNERWell, I think that the folks at D.C. Appleseed were fair, leaning toward kind. You know, I think that I would have graded a number of things a little bit more harshly in particular schools. The Office of the State Superintendent gets a lot of credit. We're now -- we're the first jurisdiction in the entire country to actually include HIV and sexual reproductive health questions on our standardized testing. And we'll have those results very soon, and that's exciting.
TENNERThey're doing a lot to monitor, but they're still -- we don't have a plan, even for schools, to how to provide basic sexual reproductive health education, HIV education. And as a good example, about a month-and-a-half ago, we tested a young woman. She happily tested, didn't test positive for HIV. She did not test positive for chlamydia or gonorrhea, but she was pregnant. She did not understand how she got pregnant. She was 16 years old and felt that if she had had more information, she would've certainly -- she did -- was not looking to get pregnant.
TENNERAnd she didn't have all the information that she needed. We're not doing enough in schools. I think, in part, what we're looking to the Office of the State Superintendent to do is to really be leaders in saying here's where we need to be. The truth is that -- and we've talked about this before -- talking about HIV and sex in our culture is remarkably difficult, and some of the subcultures in the city, even more difficult.
NNAMDIIt seems to me that, in much the same way as Christine is dealing with the broader social aspects of it, you are dealing with the broader cultural aspects of it.
TENNERThat's right. And -- but if we don't support teachers in being able to do those conversations well and support parents and churches and all of our groups to have those conversations well, they're difficult conversations, and we're likely to avoid them in the first place.
NNAMDIAnd a number of our listeners would like to get in on this conversation. We'll start with David in Washington, D.C. David, you're on the air. Go ahead, please.
DAVIDThank you, Kojo, and thanks for a wonderful topic, and you're fantastic yesterday. I'm thinking with regards to AIDS activism, about many years ago, there was a movement to storm the NIH because there was a protest that the NIH and the Division of AIDS led by Tony Fauci really was not even scratching the surface at studying cures and very few products that were available were being tested.
DAVIDIn fact, today, the overwhelming majority of that budget continues to go to one or two places, either antiretroviral research or a preventative vaccine, which, of course, won't help the people who have the disease. Only 3 percent goes to a cure, and I think your listeners would be interested in that. And I'm wondering, since the topic is activism and Cornelius mentioned that a cure is definitely on the agenda and needed, should the NIH be doing more to fund cure research and what should activists be doing to protest the lack of cure research? And Cornelius is one of my heroes. Thank you.
NNAMDIThank you very much for your call, David. It's my understanding that the -- one of the major developments this year at the conference is a study that indicates the treatment could itself become a kind of prevention. Tell us about that idea.
BAKERWell, I think that, you know, the treatment as prevention is important. I do want to, you know, acknowledge David's interest in a cure, and there will be a couple of sessions at this year's conference that are focused on cure research. That's amazing progress. And we also now have the Berlin patient, which is the first known sample of someone being cured of HIV. So we are in a place where it may not just be protest to move it forward, but we certainly have to advance the science through knowledge. But I'm a technical advisor at FHI 360, and we operate...
NNAMDIWhat's FHI 360?
BAKERFHI 360 is a global human development organization. We advance science as well as education, governance, civil society, all of those things that help to make a whole person in 90 countries around the world, including the U.S.
BAKERAnd we operate the HIV Prevention Trials Network, and one of our studies this year, HPTN 052, which really proved that if people are given access to treatment who have HIV, that through their being able to benefit from that treatment and get their virus to undetectable -- that means that you can't see that virus regenerating, recirculating -- that it protects their partners. And so treatment -- treating people with HIV becomes a form of prevention for them and their partners, and that's very important.
NNAMDIAdam, talk a little bit about how that idea is percolating around the activist community so to speak. There is disagreement about it?
TENNERNo. I think that there's -- I mean, I think there's some question. The medical community has now said that, as soon as you're positive, you get on medication, antiretrovirals. And I think there's been some pushback from folks about that. I think the other discovery really around Truvada and being able to take HIV medications for people who are negative, the zero discordant partnership is a really easy place to look at that so protecting the HIV-negative partner from getting HIV.
TENNERBut it also raises a number of issues, and it's how you practically apply that in the world. You know, who decides who, you know, it's just tricky. There -- I think it's going to be both a morally and medically tricky intervention to implement.
NNAMDIChristine, you talked about the many parts of your life. In another part of your life, in conjunction with the AIDS conference, you're organizing a march next Tuesday that will end up in Lafayette Park across from the White House. What's the goal of this march?
CAMPBELLThe goal of the march is to really look at the science, look at the progress that's being made and saying, you know, we now have the science to prevent any new HIV infections. We know have the science to treat HIV such that people can become detectable. Now, what we need is the political will to make sure the systems are in place, that everyone can afford it, everyone can access it, and we can really make some dramatic changes to end the epidemic. So we're going to be focusing on sound policies.
CAMPBELLWe're going to be looking at the billionaire's tax that could actually fund the services and treatment that we need for all people. We're going to be looking at pharmaceutical -- the drug pricing. HIV drugs are extremely expensive. So how do we make sure that drugs -- the treatment is affordable for people living with HIV and AIDS? We're going to be looking at the war on women, that a lot of the services and treatment are not necessarily developed for women.
CAMPBELLThey're not addressing the needs of women. They're not taking into account the living conditions of women, and we're also going to be looking at this from a human rights and harm reduction perspective. There are many parts of our community that are disenfranchised, transgendered people, the LGBT community. Youth are often overlooked completely when addressing the epidemic.
CAMPBELLSo you really want a human rights phase on all that we do, as well as talking to Congress, the White House and making sure there are really sound policies in place. So that's what this is about. We'll be stepping off at noon on July 24 from the convention center as well as from 7th in Pennsylvania. We'll be marching over to Lafayette Park and doing a demonstration to make sure that the people who are in power are hearing our voice.
NNAMDIPretty ambitious goals.
NNAMDIThis is one of the more ambitious parts of her life.
NNAMDIBack to the phones, 800-433-8850. We were going to go to Riley, but apparently Riley dropped off. Riley, will you, please, call back? Here now is Susie in Bridgeville, Del. Susie, you're on the air. Go ahead, please.
SUSIEOh, thank you, Kojo. I just want to give you a shout-out and thanks for everything you're doing and to thank your guests for, you know, keeping the torch lit and, you know, keeping fighting the good fight. Back in the early '80s, I was incarcerated at the Women's Correctional Institution. And I was one of the first inmates trained to educate other incarcerated women about HIV and AIDS prevention.
SUSIEAnd while I was there, I drew and wrote a comic book that was directed towards HIV and AIDS and sexually transmitted disease prevention for women that were incarcerated. And, you know, I've seen a lot of women die needlessly because of HIV and AIDS. And I'm pretty much decided that HIV is now a big, big challenge for economically disadvantaged people 'cause, you know, most of the people that I called -- people that were my friends were all becoming infected.
SUSIEAnd what makes me so sad and angry is that, for the first time in human history, we have the ability to feed, clothe, shelter and educate every single man, woman and child on the planet, and we choose not to do that. You know, if we do those things, we're going to see HIV and other communicable diseases drop down in their infection rates drastically. You know, there are people in Nepal that sell their children into sexual slavery.
NNAMDIAnd I'm glad that you brought up the broader international, indeed global aspects of this, Susie. But I wanted to get back to the specific issue that you started because the incarcerated population is a population that has not yet come up in this discussion, Cornelius, and one of the population's most adversely affected by AIDS.
BAKERThat's correct. And, you know, incarceration, particularly black men in the United States, but also poor people in general, is a huge issue. And we know that the social context of where people who are incarcerated come from have all of the complexities that Christine has already referenced, that, you know, it's often people were simply trying to survive.
BAKERAnd yet come into this judicial system that is so unforgiving, and that doesn't provide for them in terms of vocational training, their health, their education, and they just recycle into communities with less and less skill sets to be able to be productive. We also know that, for men and for women, that incarceration is a sign of likelihood of HIV infection, that whether it's before they went into a facility or while they're in a facility that they're in environments and conditions that make it more likely that they can contract HIV.
NNAMDIGot to take a short break. But when we come back, we will be coming back to your telephone call, so please stay on the line. Riley, where are you? 800-433-8850 is the number to call. You can send email to email@example.com. How has age -- AIDS touched your life? You can also go to our website, kojoshow.org, ask a question or make a comment there. I'm Kojo Nnamdi.
NNAMDIWelcome back to our conversation on the evolution of AIDS activism. We're talking with Adam Tenner. He is executive director of Metro TeenAIDS. Cornelius Baker is a longtime Washington AIDS advocate and former executive director of the Whitman-Walker Clinic. He's a member of the Presidential Advisory Council on HIV/AIDS. And Christine Campbell is vice president of national advocacy and organizing with Housing Works. I wanted to go to Steven in Alexandria, Va. Steven, you're on the air. Go ahead, please.
STEVENHi, Kojo. Thank you so much for taking my call. I have a few things. One is part of the problem I see sometimes that's been bothering me ever since these new medications that came out, the advertising for it, is these ads in papers and magazines of these really good-looking people carrying bikes and mountain climbing, and it doesn't make sense. Who cares if you get HIV? You could just take this drug and you can be an athlete, you know?
STEVENAnd, you know, kind of like the smoking commercials where sort of, like, you know, you get HIV, this could be you, you know? And it's really kind of horrifying. The other thing is the attitude of youth nowadays. You know, I'm 47. I lost all my friends to AIDS in the '80s. And it's, like, really kind of horrifying. But, you know, you talk to young people today who are in their 20s, and they're like, so what if I get HIV? I can just take a pill, and I'll be fine. And it's really kind of horrifying.
NNAMDIAdam, one can understand, on the one hand, that one does not want to make ads that are depressing. You want to make ads that are optimistic. But what Steven seems to be suggesting is that there's a thin line between optimistic and glamorous, and it seems to him that they're erring on the side of glamorous.
TENNERYeah. I think that -- I mean, those articles of people climbing, you know, have bothered activists for many, many years. I think what we've never still really come to a good balance is what are messages that are both supportive of people living with HIV and also help people to understand the severity of what it means to live with HIV and why they should avoid it.
TENNERAnd I think the error always is, you know, those ads are selling people -- to people living with HIV who want to be like those people in the same way that if I buy Tide, I will be a better dancer or -- you know, that's advertising. It's not true, by the way.
NNAMDIYou tried, huh?
TENNERI tried. But the -- and then the other pieces are prevention messages where -- you know, we recently saw the case of, on the other extreme, really, really very negative ad campaign in New York targeting gay men, that had, you know, a huge pushback and a really negative impact. And so we've just really never found that right balance, and I think, really, it speaks to the complexity of HIV, but also to the complexity -- also to the need for a complex series of conversations around HIV. It's not really just a simple check-a-box kind of issue.
NNAMDIThank you very much for your call, Steven. Cornelius, there's a new generation of young people coming of age in this era of antiviral drugs when AIDS is no longer automatically fatal. How well informed are they about the history of AIDS and the ongoing dangers of HIV?
BAKERWell, unfortunately, as Adam referenced earlier, our young people aren't very well informed. But, you know, we don't have school systems across our country that really support that history. And because that history -- you know, one, you have to be very comfortable with talking about homosexuality, with talking about the lives of gay people, talking about the contributions of gay people to our society, and most school districts are not.
BAKERYou have to be comfortable talking about human sexuality in its full and broad range. We have just spent a decade in our country fighting the battle over abstinence until marriage. And so within those contexts is we don't have a realistic approach to being able to inform our young people about the epidemic and -- both its historical context, but also the health messages and social messages that they should take from it. What are the lessons that we've learned in this?
BAKERYou know, to our credit, though, we have a lot of young people who are so committed and so dedicated. You go to Metro TeenAIDS and see -- you see young people trying to help each other. You go to AIDS Walks, and it's still young people who give energy to that. You listen to young people who are becoming less and less homophobic, more racially inclusive, and so they are, in a different way, transforming the world around them that will make it more possible to do the work that we've needed to have done.
NNAMDISpeaking of young people, Adam, in the U.S. today, AIDS is not necessarily a young person's disease. What are the demographics of people with AIDS, and how has that affected the way government funding and treatment programs are focused?
TENNERYeah. I mean, it's been a very difficult issue. If you look numerically, there are many more older people living with HIV. In 2004, CDC inserted a new strategy, which, in my mind, took a lot of eggs from one basket and just put them into another, that said, we're going to focus exclusively on HIV-positive people. And there are clear lines -- like, HIV is not a young person's disease. It's an older person's disease.
TENNERI think the tricky part about that -- and really with a lot of our current policy -- is we're not really looking upstream sort of to the -- sort of like looking for the cure. We're also really not looking for what are the things that are really going to derail this epidemic that we could be doing. So I feel like the -- you know, there's a message missing around -- we need a different set of messaging.
BAKERAnd if I can just really tail onto what Adam said about upstream because the AIDS cases or HIV cases are mostly people who are older. They've been aging with the disease. But of the 50,000 new cases a year in the United States, a near majority or slightly over majority are those under 25, and most of those are young black gay men -- they experienced the 48 percent increase of infections between 2006 and 2009 -- and young black women who often experience sexual violence.
BAKERNow, for the young black gay men, you know, they're living in black communities generally that have high rates of unemployment, high rates of poverty and marginalization. And we have really got to look at this triple threat that these young black gay men is under.
NNAMDITwo years ago, President Obama issued the first National AIDS Strategy. Its goal is to make new infections rare and to ensure that everyone who's infected has access to the care they need without any stigma or discrimination. How would you assess the strategy on its second anniversary, Christine?
CAMPBELLWell, I am just -- we're really pleased that we now have a National HIV/AIDS Strategy. One of the things that the United States required for some of the funding we delivered to countries around the world was that they had a national strategy, and the United States didn't have one. So now that we have one, I think that that's a wonderful stride in the right direction. I think that, in many ways, this National HIV/AIDS Strategy had some really great points.
CAMPBELLBut it also had some really glaring omissions. I always say to people -- I have to hand it to the MSM community because they are front and center, and they have specific goals and objectives that are going to be addressed through the National HIV/AIDS Strategy...
NNAMDIWhat is the MSM community?
CAMPBELLThe men who have sex with men community. They -- so there are specific goals and objectives that are being addressed in the National HIV/AIDS Strategy. Unfortunately, youth are not mentioned. Unfortunately, women are not mentioned. And when we pushed the issue, they said they're included in groups like black and Latino, and they were included in other things but no real specific strategies in those areas. So whereas -- it's a wonderful tool for -- to get the government working across departments in a way that's never happened before.
CAMPBELLIt's a way for our country to actually broach HIV and AIDS in a more comprehensive way than they ever had since we all have similar goals and objectives. I think that we also have to really look at how we can use the implementation plans over the next couple of years to strengthen the national HIV/AIDS strategy so it is addressing a broader spectrum and it's really going to get us to where we want to be.
CAMPBELLSo I think we are definitely on the right road right now. I think we have some work to continue to do. I think we need to make sure we build on the science that's come out in these last couple of years to update our implementation plans so that the plan continues to stay relevant moving forward and that we can actually hit the targets that the plan has set.
NNAMDIYou mentioned the march that you are heading up next Tuesday. We mentioned earlier that there were demonstrations that were going to be taking place, and I think Dennis in Washington, D.C. would like to tell us about one. Dennis, you're on the air. Go ahead, please.
DENNISHi, yes, thank you. You know, I'm very happy that we're talking about the treatments. HIV/AIDS is definitely a big problem and D.C. And, you know, recently, a treatment has been shown to work as prevention. So I would encourage D.C. residents to come out to the Washington Monument on Sunday at two o'clock. There will be a march that will be focusing specifically on treatment. And so I just wanted to ask your experts. What do they think about treatment or prevention? Thank you.
NNAMDIAnd my understanding that Archbishop Desmond Tutu is going to be participating in that demonstration?
CAMPBELLYeah, that's the march on Washington that'll happen Sunday at two o'clock, as Dennis said at the -- its kick-off from the Washington Monument. And I think that one of the things to remember about the conference is that all week long, there will be advocacy and activism pushing forward the agendas.
CAMPBELLAnd I think that we need to really focus that everyone has a role in this, that these are not competitive events, but they're one building upon the next and that if you look at things like the Arab Spring or you look at something about like what happened in Wisconsin, the importance of us continuously beating that drum and being at as many of these pieces and making sure that our voices are heard is key.
CAMPBELLOne of the things that some of the organizers I've heard from, from congressional representatives as well as the administration, is that they hadn't heard the voices of people living with HIV and AIDS about the importance of fighting HIV and AIDS globally, domestically and locally. So I think it's really important that we kind of look at it in that vein and that we really take it back to the streets and make sure that our voices are lifted up and heard in ways that have not been done in the past few years.
NNAMDIGot an email from Ron in Alexandria, who writes, "I remember Ryan White back in the '80s. How much of a role did his life and death play in AIDS advocacy and change the way people throughout -- people thought about the disease back then?" Of course, while we're talking about Ryan White, a law bearing his name is one of the primary funding mechanisms for AIDS surface provisions, but that law needs to be reauthorized. What should we be expecting, Cornelius?
BAKERWell, first, I mean, Ryan played an incredible role in the epidemic and, you know, and his mother Jean -- Jeanne White-Grinder continues to play an enormous role. She'll be here next Tuesday at Lisner Auditorium for Whitman-Walker's Return to Lisner event. And, you know, we wouldn't actually have the law if it wasn't for Ryan's courageous leadership.
NNAMDIAnd he contracted AIDS by way of a blood transfusion as a child.
BAKERThat's correct. And when he died, I mean, a bill to create this services act -- and what this Ryan White Services Act does is it provides funding to the state, it provides funding to cities that have high incidents of HIV, and it also provides funding to community groups across the country to provide everything from dental services to some housing support to case management to help people live with HIV. And we wouldn't have had that without Ryan's leadership and his death.
BAKERHis death so embarrassed our Congress that it was the night after he died that we finally got a vote, and the bill was named after Ryan. And so we owe a deep debt of gratitude to him. That bill will sunset next year. And the big question is, now that we have the Affordable Care Act, what should the Ryan White bill look like? What should it pay for in a time when many people -- not all people will be able to become insured?
BAKERUndocumented people, recent immigrants, people of certain middle income or working poor categories will not benefit from the Affordable Care Act, and they will still need the services of the Ryan White CARE Act to support them. And so we're going to have a big battle ahead as Congress seeks to cut out many services in our country.
NNAMDIGlad you brought up the Affordable Care Act. Adam Tenner, now that people with AIDS rely on medication to stay alive, what effect will the aforementioned Affordable Care Act have on access to AIDS drugs?
TENNERWell, our hope is that it will improve it. I mean, I think in a lot of states outside of D.C. where -- to actually even qualify for Medicaid is so low, the Affordable Care Act will help more people get access to health care. I think, you know, we're hoping that, as a country, it'll help improve our overall health and address some of these systemic problems, I think. To Cornelius' point, part of what we're also looking at is what will the impact be on HIV services.
TENNERThere is -- we're probably a moment in time where there's this question about how mainstream should HIV and whether HIV should be treated as a very manageable disease, and yet most of us in the trenches working on this issue to try, again, you know, either upstream or working with people living with HIV, know that lumping it into sort of larger health issues will not really help. We need to really also make sure that we're talking about the real -- the idiosyncrasies of HIV and how we're going to solve the epidemic.
NNAMDIHere now is Nick in Winchester, Va. Nick, you're on the air. Go ahead, please.
NICKOh, thank you, Kojo. I wanted to mention just a couple of topics as we're talking about the history of HIV...
NNAMDIWe only have about a minute left, so, please, try to be brief.
NICKOh, god, I'll try to speak fast.
NICKI was working overseas for most of the '80s, so I missed some of the stuff. But I think one of the key periods or key events was Rock Hudson being diagnosed. That brought it into the public's -- the public at largest focus. There were -- at the same time there were a lot of prejudices about the fact that it was occurring to either homosexuals or Haitians. But I want to mention three things. One was Dick Cavett going on TV and saying, listen, let's talk -- let's get away from the...
NNAMDIYou got 20 seconds.
NICKThank you. You're not going to get AIDS from a toilet seat. Then when I was in -- a (word?) officer in Panama...
NNAMDIAnd I'm afraid you're just about out of time, but thank you very much for your call, Nick. Christine Campbell, thank you for joining us. Christine is vice president of national advocacy and organizing with Housing Works. Adam Tenner is executive director of Metro TeenAIDS. Cornelius Baker is longtime Washington AIDS advocate and former executive director of the Whitman-Walker Clinic.
NNAMDIHe is a member of the Presidential Advisory Council on HIV/AIDS. If you go to our website, kojoshow.org, you can get more information about the international conference next week. I'm Kojo Nnamdi.
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