Webinar – Grassroots Leaders Reversing HIV Stigma: Peter Staley, David France, Requel Lopes, and Linda Villarosa
March 9, 2022
Sabrina Sholts:
I am Sabrina Sholts. I'm a biological anthropologist here at the museum. I'm the curator of the Outbreak Exhibit that I just mentioned. I'm a blonde-haired woman wearing a green jacket over a white shirt. Behind me, you can see my rather cluttered office here at the museum in downtown Washington, D.C.
On the screen are portrait photographs of our three panelists and our moderator, along with the date and title of today's event: Grassroots Leaders Reversing HIV Stigma. Peter Staley, David France, Requel Lopes, and Linda Villarosa. Thank you so much for joining us.
As people continue to trickle in, I am going to go through our standard housekeeping notes as we do for those who are new to our programs. First, closed captioning is available by clicking the arrow next to the CC button on the Zoom tool bar. That should be located either at the top or the bottom of your screen.
We will be opening up for our audience Q&A after the conversation portion of the program. Please feel free to submit your questions for our panelists at any time in that Q&A box on the Zoom tool bar. The Q&A goes by really quickly, and that will help us answer as many questions as possible if you submit them when you have them.
Let's get started. I'm super excited for this conversation today. For the past five years, the Outbreak Exhibit and our associated programming has been educating the public about viruses that spill over to humans from other animals about the pandemic threats of the emerging infectious diseases. Yes, for five years.
How human animal and environmental health are all connected as One Health. I'd like to take a moment to say thank you to the many organizations that have provided support for Outbreak over the years, including those that provided funding. There are a number of epidemic and pandemic viruses that are featured in the Outbreak Exhibit now, including SARS‑CoV‑2.
HIV has been always and remains to be center and the heart of the exhibit, I have to say. Despite all the people and the perspectives and the experiences of HIV pandemic that we've tried to represent in the exhibit, there are far more stories than we have space to tell.
That is why our programs have been so important in expanding our ability to bring more voices and faces into the conversation. Today's program continues more than five years of conversations that have aimed to raise awareness about the HIV pandemic. To honor the more than 36 million lives that have been lost to AIDS and to call attention to all the challenges that remain for all of us.
After more than 40 years, since the first cases of AIDS were reported in 1981, there is so much more work that still needs to be done in order to end this pandemic further. HIV stigma remains a huge barrier to achieving that goal. That's why it's the focus of this program and why we are so grateful and I'm so excited that we're joined by such an inspiring group of people.
Who have dedicated so much of their work and lives to this cause. Our conversation features long-term AIDS and gay rights activist, Peter Staley. Filmmaker and award-winning investigative journalist, David France executive director of the World AIDS Museum, Requel Lopes.
The conversation will be moderated by journalist, Linda Villarosa. Before we get started, and I turn things over to Linda, I'm just going to take a moment to introduce each one of our guests to you. Peter Staley is a long-term AIDS and gay rights activist, who first started as a member of ACT UP New York. He became the founding director of TAP, the Treatment Action Group.
He was a 2016 Fellow at Harvard's Institute of Politics and is a leading subject in the Oscar-nominated documentary, How to Survive a Plague. More recently, Peter co-founded the prep for all collaboration and the COVID-19 Working Group New York. He is the lead named plaintiff in Staley v. Gilead, a major federal antitrust case against big pharma set for trial next year.
Also, Peter recently published his memoirs, a fantastic book titled, Never Silent: ACT UP and My Life in Activism. David France is an Oscar-nominated filmmaker, New York Times bestselling author, and award-winning investigative journalist who has been covering the U.S. AIDS epidemic since the early 1980s.
As a filmmaker, he made his directorial debut in 2012 with of his Oscar-nominee documentary featuring Peter, How to Survive a Plague. His non-fiction books have won numerous awards. I recommend the book, How to Survive a Plague, as well as the documentary. Some of his journalistic work has inspired other films, including the 2005 Showtime series, Our Fathers.
Requel Lopes is the executive director of the World AIDS Museum and Educational Center. A museum dedicated to the history of HIV. The mission is to promote dialogue that eliminates HIV AIDS stigma through education, artistic expression, and cultural programming. Additionally, Requel held the seat of chair of the Broward County HIV Planning Council.
Had sat on the board of the Poverello Center. One of the largest food banks that services the chronically ill and HIV-positive members of Broward Council. Finally, Linda Villarosa is a contributing writer at New York Times Magazine covering race and public health. She's a former executive editor at Essence Magazine.
In 2017, her cover story, America's Hidden H.I.V. Epidemic rather was honored with an Excellence in Journalism Awards by The Association of LGBTQ Journalists. That organization inducted her into its Hall of Fame in 2020. Further her book, Under the Skin: The Hidden Toll of Racism on American Lives and on the Health of Our Nation, will be published this June.
Look for that. Thank you again to our guest for being here today. With that, Linda, I'm going to turn it over to you.
Linda Villarosa:
Thank you, Sabrina for that introduction and to the introduction all the panelists. Thank you to the National Museum of Natural History at the Smithsonian for hosting this conversation. The young adults in my life are hungry to make sense of the world and hungry to find their place in it, and to figure out how to make change.
I'm always curious about how much they look to the past. They look at activists who've been in it the long-term. Especially, in the HIV/AIDS epidemic that is so long-standing. To look at how activists in the past, including the three who continue to be activists in the present have dealt with this in different ways, and how they were able to make social change.
There are no three better people than to talk about some of these issues than the people here. David France, I'm scared to say how long we've known each other, but I'll just put it this way. When I was a baby editor at the New York Times science section, and David was my baby writer. I edited his work and was surprised and happy when he went into filmmaking.
Peter Staley, I have known you in print and in David's film in your book and in your work. I'm really inspired by you. Requel you're a new friend. I have looked at your work. I'm really interested and engaged and inspired by the work you do on the ground and continue to do. Please join me panelists and we will get this conversation started.
Don't be like me, keep your hands still. My first question is when we're thinking about how we can make social change and it's hard now. It's different from when many of us were first starting out in doing this kind of work. Talk about what it has meant to you, each of you, in your lives.
How activism has enriched your own life, the work you do. How it has enriched you? We'll start with David, go to Peter, and then Requel.
David France:
Thank you, Linda. Thanks, Requel and Peter for allowing me to join you on this panel. It is an honor to be among you. To see you again, Linda, after all these years. For me, to be on a panel that activists and activism challenges my thinking about myself and my role for all these years, I have been a journalist and storyteller.
In that regard in HIV that has required activism to take on and to reveal those hidden truths. Those truths that have been kept from us has taken aggressive journalism to do. I've thought of that as being my work. I continue to do that work in HIV. It's been harder at certain periods of time to convince gatekeepers to let those stories come out.
That's really been my mission is to insist upon transparency and accountability. At the same time, gather our stories of success and failure of trauma and achievement. Make sure that they are preserved for future generations to consume and to know what we encountered. What we were up against. How and when we were able to prevail.
Peter Staley:
Thanks, Linda. I've always said I've got into activism initially for very selfish reasons. I was a totally closeted bond trader on Wall Street when I found out unexpectedly that I was HIV-positive in 1985. I was 24 at the time. In the biggest stroke of luck of my life a year and a half later, a movement was born in my backyard here in New York called ACT UP.
I joined very early on, really because I thought it was my only chance at buying myself some time, some months, or maybe years of additional life. By that summer, a few months into it, that selfishness began to fade away as I caught the bug, as it were. The bug of progressive activism in a people's movement. People coming together in large numbers with passion and drive.
Ready to change the world and to help lives outside the room that we were meeting. It wasn't just about us. It was about tens of thousands and eventually millions of people with HIV that we were fighting for. Once I caught that bug, there was no turning back. It was a glorious feeling and I've been at it ever since.
Requel Lopes:
I think that my life is about as activist. It is coming from a family and generations of people who have fought for their very existence. I looked to my grandmother's. A question was asked earlier today in another meeting because it's Women's Month. International Women's Day was yesterday. Who were influential women in your life?
I turned to my grandmother who fought to get an education and then to fight to be a principal to educate children in Cape Cod [inaudible 00:13:57] where I'm from. Then I look at my aunt, my grandmother's sister, who traveled the world and was able to see the freedoms that other people had that was not afforded to her in the United States.
I came to college with that, "Let's do some attitude." In my first year at Barnard College at Columbia University was 1985. It was really smack-dab in the middle of what was really happening. You could see it on the campus. You could see it in New York City, and you could see it in Harlem because Columbia, although they say it's Morningside Heights, it's in the middle of Harlem and watching it there.
I feel like activism has always been a part of me. HIV and AIDS was the mantle in which I chose to rally around what was happening and the lack of humanity people had for individuals who were living with HIV at the time.
Linda Villarosa:
I really love that answer, Requel. David, I relate to you talking about the difference between activism and journalism and people often mistake that. Somebody called me an activist journalist and I said, "I prefer an engaged journalist or something. A principled journalist." Journalist with an edge.
Requel, I'm going to start with you. I love when you talked about the inspiration that came from your family. For each of you, was there a turning point? Something switched inside of you. Peter, you talked about this, but was there something that changed?
Something that happened that was that moment that turned you toward activism or really drove the inspiration up even higher? We'll go with Requel, Peter, and then David.
Requel Lopes:
I think watching death around me. It was happening very quickly in the '80s from people that I was getting to know as a freshman and in New York City and the community. I think what really motivated me the much is I became a buddy for a woman whose husband had contracted HIV and had passed. She too had HIV and so did her young daughter.
The purpose really was to give people hope where she didn't have hope. She was willing to give away everything that she had and didn't see any reason to live. She, for me, was the galvanating force to say, you know what, for those people who can't speak for themselves.
This is an opportunity to really touch upon the reality of what HIV was happening around everybody in this world. It was the idea of storytelling much like David said. I think that storytelling is a way for people to really connect in ways they probably wouldn't if it was in academic didactic.
I'm going to talk to you and at you, as opposed to feeling the story of somebody's struggle and pain. Viscerally understanding what was going on there. I think I really look to her in giving me the strength to really say, "This is much bigger than me and that I need to really be focused. Live into the power of being able to speak."
Peter Staley:
For me again, I'll continue where I left off. Those Monday night meetings at ACT UP, right from in the get go, the first meeting I walked into, it was already over 100 people. It was a real mix generationally. There were some Stonewall veterans. We had our core of lesbians who had experience with prior movements and had that movement memory.
They were going to help us hit the ground running. We had a frightened, naive, closeted gay men like myself who didn't know a thing. There was no doubting from the energy in the room. As I looked at those faces, including the Stonewall veterans that everyone knew we were going to make history.
This was a new level of passion for the queer community in New York that hadn't been experienced since Stonewall in a sense, and it was all in. We didn't know whether we'd actually create change that affected lives, but we knew we were going to be in the limelight for a while, and we were going to make waves and catch people's attention. I just got very swept up in that.
I believed ever since that the strongest activism is coalition work. It's people power. I've never felt powerful as an activist individually. All the activism I do including today is with groups of others in coalition. Certainly, the people power of ACT UP was extraordinary to witness and a great education for me in how change happens.
David France:
I came to the AIDS movement years before either you Peter or Requel did. I had moved to New York to leave the closet behind, to live in that isolated bubble in New York that we used to call the queer ghetto. I arrived just weeks before first reports of HIV, not yet called HIV, hit the New York Times and exploded with this news of this pending disaster. As it became clear over those next couple of months and years that this was really going to be a disaster, everybody that I knew who was engaged as I was already at that point in queer politics felt a need to do something.
That often was to take care of people like you were talking about Requel, to be assigned a buddy to help people individually in their journeys through the healthcare system. I didn't have that capacity to do that. I had no bedside manner that would be at all appealing to anybody. I had very little to offer that I knew of.
That's when I started thinking about journalism as the possible response for me. It allowed me an arm's length distance from the medical realities of the disease, where I was squeamish and unwilling to run into those rooms, at least initially. And I identified this lack of information as being one of our key challenges.
Although, I had no training in journalism and had no plans to enter journalism, it was literally something I took up in response to HIV, so that I could offer whatever I might be able to find and insights maybe hidden truths to people who needed it the most. By 1987, in the watershed that Peter's talking about with the advent of ACT UP grassroots AIDS activism, those Monday night meetings became necessary fulcrum for information for people. I went to all those meetings to report not on what ACT UP was doing, but on the information that ACT UP was digging up or hearing rumors about. Then trying to find ways to verify that information. To challenge the information, to bring it out in the public.
I don't remember what years you and I were working together, Linda. At some point, this became very personal though I was trying very hard to avoid it when my boyfriend got sick. This need for information became much more urgent for me in a very day to day way, and drove my journalism even harder during those years.
He unfortunately died before the advent of effective medication in 1996. He made me realize that I couldn't stay on the sidelines of the medical aspect of HIV having remained somehow miraculously HIV-negative myself over the years that I had to dive into those hospital suites where so many of my friends were.
Linda Villarosa:
Thank you for that, each of you. A question for all of you, it's not the '80s or the '90s anymore. Certainly, we've progressed since those early days, but where are we now with discrimination against people who are living with HIV/AIDS stigma.
Also, discuss, which are the groups that remain the most vulnerable? We'll go with the same order. Requel, Peter and David.
Requel Lopes:
I've been thinking about this question a lot because when we do what we do at the World AIDS Museum it's really imperative to look at HIV not from just a small area, but from a global area or a national area. Really look at what and who is being really impacted by HIV.
Yes, we've done wonders in biomedical interventions from what we were doing in the early days, but biomedical interventions can't be the only way that we work to eradicate HIV. There's still a need for preventions. Although, the rates of people passing with HIV may be going down, the rates that people contracting HIV are high.
There is still a need to have conversations in all communities about why it's relevant to still talk about HIV. Talk about it as a pandemic and understand what that really means. Not only because people who don't have sex with the same gender believe that they're not at risk for HIV, but our youth and our seniors.
Our seniors specifically because at a certain age, if you were married and had children, you've done your children, and now you have this freedom, it's the second sexual freedom that we all have at a certain age. In saying that we don't really talk about prevention. We think that if for women, if we're in menopause, we can't get pregnant, that's great.
We don't talk about all the other things that go along with intimate relationships, and so I look at that. I also look at our youth who, as we all know, we went through a period of not really understanding these concepts of sex or interpersonal relationships, and stumbling through them. Maybe doing things we didn't want to do.
A lot of what I look to is how do we continue to give tools in the toolbox for not just our youth, but for everybody. I think that we all still need to really talk about the stigma of men who have sex with men. That we don't want to talk about that still. We don't want to talk about how people contract it? Who get HIV?
Whether that be from sex or drug use, or where they work and sex workers. These are people that we don't really want to have conversations about or with, and yet we are all part of this human fabric. For me, it's important to really talk about healthcare and how we really don't have adequate healthcare for people.
People who are marginalized and who don't see that as an important aspect of our life because there's other things that are more important. Like putting food on the table, or having a paycheck, or having a house to live in. Until we really talk about what they're now coining as determinants of health that affect what we do, then we are back to the same question of how do we prevent or do effective prevention?
I think in the early days we did really good prevention conversations in education that went to the wayside, my opinion. When biomedical interventions became more prevalent because people weren't dying. Yet, people are still getting HIV. We don't start doing work there. Then, we're going to be in this hamster wheel for a very long time.
I'm always about public health. Always about talking about HIV in all groups that I talk, that I go and interact with. There's always a place to put it. If you tell them you're the executive director of the World AIDS Museum, that's front and center, you can't get around it. Some people have had, I don't want to say audacity, but maybe that is it.
To step back as if there's a contagion that happens when you merely speak the word HIV. Part of what I try to do is make that word less threatening, but empowering. It is powerful for the people that are living with HIV and have been living with HIV for the last 40 years to hear that there's empowerment with the word HIV and that they're not alone.
There are people out there that are working to support as well as walk side by side with individuals for people who are looking for support. It doesn't mean that they're all activists, but they're activists in their own way because they're giving voice to their lives. What the importance of that is. That's it.
Peter Staley:
Thanks, Requel. First off, I want to thank the Smithsonian for putting stigma front and center in an HIV discussion. As far as plagues over time, it's stunning and remarkable how much stigma has played a central role in HIV from day one. That movement that helped save my life people forget that it started six years into the crisis.
The first cases were in '81 and ACT UP didn't get formed until '87. There was activism before that, but really it wasn't big enough to burst onto the national scene until ACT UP came around. The reason we were so late to the scene is because the first cases were in gay men.
We were as a group, one of the most hated minorities in the country and our government. Most of the population was perfectly willing to let us die and didn't respond to this new virus in any meaningful way for years. Famously, we had a president who didn't even say the word for many years.
Stigma set in from day one, it became worse and worse as the years went on. Homophobia actually increased during the first six years of the crisis. ACT UP's job number one was to try to make a dent in reversing that stigma in order to get a response initially to Republican presidents, Reagan and then Bush.
Get a response from government in general. We took a real risk because the reason we hadn't burst out nationally is because we were always worried we'd make the backlash worse. The stigma was that frightening. We were worried about being quarantined. We were worried about violence.
ACT UP said, "Listen, let's just put all our anger, our true selves on the line on TV. Let's go all in and pray that some Americans see our humanity." That began to actually change things and it changed the dynamic. Over time the groups have changed as white gay men have climbed the privileged ladder over time.
HIV like all viruses take advantage of ignorance and stigma. It has spread to far more diverse communities. It's around the world. The activism today, Requel is very right we haven't focused enough on prevention. We have continuing infections mostly in people of color, young gay men of color, trans women of color.
One of the reasons as I joined a group called PrEP4All in 2018 is because this new biomedical intervention that blocks HIV transmission by nearly 100% was only being used by middle-aged gay white men. It wasn't really getting distributed and talked about in the most effective communities.
Stigma continues to drive this virus. It drives most viruses as Requel pointed out it affects our healthcare system in general. We definitely saw it play out with COVID. We have our work cut out for us. You're muted, David.
David France:
I don't know that I can add anything to that except to say that obviously, the stigma and bias and bigotry run hand in hand. We saw that at the early part of the HIV epidemic. We saw it as that epidemic started to change characteristics and move into other communities.
Today, I think nobody knows this better than Linda in your reporting that the pandemic is a burning fire in the United States in communities of color, where the statistics are shocking. There's a one in two lifetime chance of being diagnosed HIV-positive for African American gay, bisexual and men. That's enormous.
One in 20 African Americans of all genders will also test positive in their lifetime. Those numbers are remarkable unaddressed and an ongoing tragedy. They reflect the in position of this stigma on marginalized communities. If we didn't know that before COVID, COVID showed us just how broken our healthcare system is.
Just how alienated and ejected from the healthcare community of so many Americans are. The data just showed that we have communities of color in the U.S., who are suffering chronic illnesses that are otherwise treatable, whose healthcare is so already depleted that the arrival of this new viral pandemic struck them much more dramatically and fatally than other people.
That's not just in the U.S. We see that the problems with the roll out of HIV medication around the globe have lot to do with stigma. People not wanting to take the medications, because it will reveal to those around them that they are HIV-positive. Countries where talking about being HIV positive is nearly I possible in a cultural and social way.
How you address those campaigns is certainly something outside of my realm of knowledge, but that I have been in this pandemic for all these decades and still have not overcome that is a remarkable failure. Shows how much work we have to do.
Linda Villarosa:
Thank you for acknowledging my work. I wanted to add to that at the beginning of the pandemic, I remember there were people saying over and over, "Viruses don't discriminate." It was before we had any numbers that looked at what the impact was in different races. I was on a Facebook live conversation.
It was two years ago. Everyone had been involved in HIV aids in some way, it was organized by Phill Wilson of the Black AIDS Institute. Then there were people who were physicians, activists, worked at agencies, and we're talking about this is going to hit black people hard. There was no conversation about it.
People had been trying to place editorials and essays about this, about the racial disparities that are going to come, because viruses do discriminate. They hit where -hit hardest- where there's marginalization and stigma, and there's problems already. I just remember, I went to the Times and I said, this conversation's going on.
One of the other parts of that conversation among these people who already had so much experience with HIV, they were saying, "The mainstream media doesn't care about this." I remember I said to my editor, "They're saying the mainstream media doesn't care about this. We are the mainstream media. I am that. I care, do you care? What should we do?"
That was how we ended up writing that, running that first cover story about racial disparities in HIV and COVID-19. I just remembered everyone that raised that red flag was someone who had experience in HIV/AIDS. I never forget that lesson. It's an important lesson to listen to people who already have experience and know something.
I want to turn back to you, David, to talk about can we all know about How to Survive a Plague, but also your films that cover international issues. Whether in Iraq, Chechnya, and other places. Can you talk about how you come up with the ideas? Where you decide that you're going to decide to cover in a film?
Films take a long time. They take a lot of money. How do you decide what to cover?
David France:
That's an interesting question. My first three films are my effort to study and elevate activism and activists. How to Survive a Plague is really a story about how activism changed the course of science. Permanently changed the course and science and medicine, and politics as Peter is pointing out in really central ways.
That radical transformative queer activism is something that I've always admired. I've always wished I understood how it worked. After that film, I went on to look backward in time to tell the story of the original transgender activists, Marsha P. Johnson and Sylvia Rivera.
How they having no formal education, no access to power, no philosophical tradition managed to reimagine gender possibilities at the very dawn of the modern queer movement. How that clashed with a movement was really fascinating to me. Those two individuals with such little power and such a distance from the megaphone, who might have been able to do that.
The third in this trilogy was about for me, about how that works today and that's what brought me to Chechnya. I've followed on the heels of reporting. One of our colleagues, Masha Gessen, who had traveled to Russia to tell the story about what activists were doing there in response to this ongoing genocide against the queer community, and that kind of heroism.
When individually, they did not need to do that. The people who stood up and endangered their own lives to the point of many of them having now been forced into exile is something I really wanted to understand. That's my trilogy of activism films, which I learned so much about.
Over the last two years I've been back in the area of science and I've just finished a film, How to Survive a Pandemic, which will be on HBO later this month. That's the work of the researchers, many whom we've all known from HIV who had decades of failure, unfortunately, in their efforts to find a vaccine against HIV.
Recognized that they were in a position to do something really affirmatively and successfully against this new coronavirus. Scored such a remarkable victory across the board in the development of vaccines. That's been my work so far in film.
Linda Villarosa:
Thank you for that behind the scenes look into your brain. Peter, you've spent much of your life and work fighting the government and pharmaceutical companies to make medication more affordable and more accessible. Can you talk about where we are with that now?
I was thinking about this question, because when we were talking yesterday. I went to my mom. My mom's 91 and she has a medication that costs $491 for a month. We couldn't believe it. I just thought, "Well, this is the work you do." How has the work you do in fighting for affordability changed over the years?
Peter Staley:
When I started getting my hands dirty on designing actions for the treatment and data committee of ACT UP New York access issues were top of mind. Right off the bat, ACT UP's first demonstration on Wall Street came out a few weeks after the approval of ACT.
The world was shocked that the company which had very little to do with its development, the government had done most of the work had slapped on a price tag of $10,000 a year, which that sounds cheap these days. Back then, that was the highest price of any drug in history by a mile.
Initially, we just used really heavy public pressure and demonstrations, and taking to the streets. We invaded their headquarters in North Carolina. Shut down trading the New York Stock Exchange. Worked in coalition with other groups. Over a series of few years, we got two price decreases out of the company.
Thankfully, the dose was cut in half, which cut its price a further 50%. We reset the level for antivirals because Bill Welcome was making it very clear to us that $10,000 was going to be the cost of all future AIDS drugs, each one of them. We got that all the way down to a little over $3,000.
When the next drugs did come out, they were not $10,00 they were actually cheaper than $3,000 each, which is still ridiculous, but that created price competition. When a new class of HIV drugs came out, they also stayed away from the $10,000 level. Protease inhibitors were about $5,500, $6,000 at the time.
There was huge innovation with that price competition. That innovation is the reason I'm on this screen these days. Since then, as activism faded in after 1996, the company has very quietly just kept increasing their prices. They started playing a game in the early aughts where they started gaining the patent system.
They were in an area where we were combining those pills into single pill tablets. The companies got together and quietly, they were signing contracts to do this. Unbeknownst to people with HIV, they were putting language in that contracts that would keep generics off the market far longer than a law should bring them to market.
That's what this case is involved that I'm the lead name plaintiff on Staley versus Gilead. It's Gilead et al. We also are taking to court J&J and Bristol Myers Squibb, et cetera. All the companies they signed contracts with. We are now with HIV these single pill tablets are $40,000 a year, which is insane.
We know that they could be at least half that if they hadn't had the language in those contracts. That's what the whole case is about is striking down that language as anti-competitive and basically calling out Gilead, et al. Saying, "You've created a monopoly and we are going to break it apart." Stay tuned. We think we got a great case.
There are now 30 law firms involved, believe it or not. 20 companies have been roped into it. Including all the payers for HIV drugs, insurance companies, et cetera. That's just a U.S. battle. Obviously, the more powerful win was breaking those patents in the early aughts so that we could get access for these drugs in the rest of the world.
Very specifically, where the bulk of HIV was being transmitted, Sub-Saharan Africa. That took a great deal of activism from a great many groups. That victory is the reason we now have, what is it, David, close to 30 million I think are on treatment around the world. Somewhere around 25 to 30 million.
David France:
I think 25 million. That's amazing. That number grows every year.
Peter Staley:
Pricing, patents, access, we're still knocking our heads against our wall on this, and it's a never-ending battle. To answer your question in a short sentence, it moved from street activism for me to the federal courts, at least in the U.S. We're using all tools by any means necessary.
Linda Villarosa:
I like that. Requel, we were thinking about the role of museums in both creating change and reducing stigma. Certainly, your museum does that. I was also thinking of what we love when we call the Blacksonian. Can you talk about the role of museums in creating change in reducing stigma?
What can museums around the country even around the world do to join in this change?
Requel Lopes:
I like the way you said it's a Blacksonian. I really do like that. I also want to thank the Smithsonian because without it would be challenging to have these very in-depth conversations around subject matter as this. I think that museums have a role. Most people don't think that museums are activistic, and I beg to differ.
Anytime you really talk about the history of anything on some level that is activism. Some people just don't want to hear where things come from or how people's reactions to those things have manifested. I think that rightly so, one of our founders Steve Stagon said, "That stigma is as deadly as the disease itself."
That's a really, for me, a true statement that stigma in itself in any form, isms in any form, really go to the heart of how people buy into it, and then replicate it. Then you are now thinking it is truth. Truth is something that has been challenged as of late for many years.
When you go back in history and history in itself is somewhat flawed because it's in the viewpoint of the individual who is doing the conversation in the book and the research, but yet there is a fabric in a diaspora of our history, all of our history that still hasn't come to light, or is coming to light and people are challenging it.
The role of museums for me is that it tells that story. It goes back to storytelling. It goes back to putting in the information, so it is able to be absorbed by all. There are museums of science. There's museums of various histories. There's museum of automotive. There's a museum that tells story from a viewpoint that is really relevant.
I think that what we are trying to do at the World AIDS Museum is tell the story from various viewpoints on HIV. Realizing that it's a large task that it can't just be one institution doing it. It should be many institutions doing it. There are some who are telling it from various points.
I think that the collaborative effort in telling the story and educating and being able to be a part of that is what I always strive for. Collaboration is the key. You can't do it in silos as Peter said. You have to work with other people. I'll give you one example quickly is that when I first started this job, we were being a part of a grant of capacity building.
We were all nonprofits from various background. I happened to be the only one from HIV. I knew the facilitator of this particular workshop. He asked me point-blank, "What do you think people around the room know about HIV?" This is in 2018, '19. All of these come from their heads of nonprofits.
I said, "Well, I don't know." I said that knowing that arrogantly that people at least knew something, and that they wouldn't pass on misinformation. He asked a woman next to me, and the woman said AIDS is cured. HIV is cured. I did the same thing and I had to hold my tongue because the next guy who said that the problem with HIV in the black community is that Magic Johnson looks so good.
That he's getting different pills than everybody else. Another person said, "Well, you can just take a pill and everything will be okay." Inside, I am raging at the idea that this is come to fruition that stigma and lack of education because of the stigma has got us to a point where we're having "learned people" continue to perpetuate laws under the guise of fact.
For me, that really launched this idea of the hashtag until the last story's told. It tells me that the conversations still need to be had everywhere. This pandemic is not going to end until we have real serious conversations about what it means and why we're still here 40 years later. Yet the research that we've had that came out of HIV helped propel what we got for COVID.
Helped propel a lot of other research. I leave this point is that although HIV is here, there's a lot to be grateful for in terms of where we are, and how we've moved forward. Yes, there's a lot of work to still be done, but we have to at least sit here and say, "We've done a lot of work." The end of HIV is closer than it was years ago.
It takes everybody in this room, everybody on this call, everybody in our own communities to be able to continue to tell the story of HIV, so that then our children can then say, "We remember when HIV raged in the world."
Linda Villarosa:
I think all of those answers are really inspiring, moving, and thoughtful. I'd like to open up the conversation to everyone out there. I have a couple of questions in the chat. I'll start with the first one. The first question is how soon will insurance plans begin covering the cost of injectable PrEP? What is the current state of HIV vaccine development?
Peter Staley:
I can do the injectable PrEP one. For the audience, PrEP is pre-exposure prophylaxis for HIV. The first two version of that were daily pills. A third competitor come on the market with a long-acting injectable. The first two already went through a long process with our healthcare system where it gets listed as a preventative.
Therefore, insurance companies have to pay, have to fully cover it including all the ancillary expenses like blood work, et cetera, and doctors visits. That exists for the first two drugs, but not for this new expensive injectable. HIV prevention activists are pushing hard. Unfortunately, that's a cumbersome time process with this committee looking at it.
Hopefully in a year, two years most, we will have the long-acting injectable. The harder challenge that we're trying to do at the same time is international access because we have generic Truvada for PrEP for around the world at very, very cheap prices. The long-acting injectable, which is made be the spinoff of GlaxoSmithKline. They are refusing the licenses around the world to generic companies like they do with all their antivirals.
We've just learned this and HIV activists are just like, "What is this 1998 again?" We're furious. It's going to take a lot of button-pushing and hardcore activism to make that company bend and break and open that up to licensure to the generic companies in India, et cetera, so we can get the long-acting PrEP around the world.
David France:
I can give a brief update Peter, on the vaccine front. Two years ago, when we first learned about this new pandemic the field of HIV vaccine research had become so dispirited that there was only one candidate in human trials anymore after billions and billions of dollars and decades of effort.
That was a candidate out of the Harvard Lab. Just the last year phase three trials of that vaccine proved that it also was no match to HIV. However, the good news is that so many of the researchers have learned so much just in the last year and a half in the COVID fight, that they are feeling reinvigorated to go back and readdress the challenge of an HIV vaccine.
Linda Villarosa:
Thank you. The second question is talking about structural and institutional barriers that existed in the past. Those are the kinds of things that ACT UP and TAP you were fighting against. It was just like governments keeping people from getting the treatment and care they needed.
The question was, "What kinds of those structural barriers remain today?" One of the comments was, "Such as the limitations on gay men giving blood donations. What kinds of structural and institutional barriers still remain for people living with HIV/AIDS?"
Peter Staley:
Requel, do you want to go first on that or should I?
Requel Lopes:
Oh my goodness, I knew you were going to do that. I'm not sure that I can give, well, I think that there are organizations that are really doing the fight and the activism around HIV-positive or gay men being able to give blood, but there's also activism around decriminalizing HIV where you still have that on the books in many states.
I think that the work that needs to be done is in arenas of just basic human rights. I'm sorry, human rights is what I'm going to put this under that you can't give blood, even though all the blood banks have tremendous screening that they've had for a while. Although, they did not want to do this in the beginning, it has been in place for decades now.
This kind of discrimination is no longer needed. I think that what we have is a stigma of HIV playing an integral role in how we view human trials for HIV and how we don't want to make a "mistake" by letting these go. Then, something happens. Now, people are alarmed about letting rules and regulations that are archaic go to the wayside. That's my staff at here.
Peter Staley:
I would just add in that this issue really gets to the inequalities that are built into the U.S. healthcare system in general. It goes beyond HIV. We really saw it play out with COVID. I'm glad that COVID brought a new focus to it. It's all that epi Twitter is talking about these days, which is a really good thing.
As long as we have this very complex patchwork healthcare system, where people have to put together various programs, they have to get on healthcare and then they have to do additional programs to patch up all the holes in their healthcare. The most marginalized are going to slip through the cracks.
I think we've seen that again and again. We continue to see it with HIV. Let's be frank, we're not going to ever be able to really solve that until we start winning elections by larger margins against a Republican party that wants to solve debt.
Linda Villarosa:
I wanted to add. Last year, I went to Charleston, West Virginia, where there is an opioid crisis and to look at and understand the HIV/AIDS outbreak that is going on in that area, in that region as a result of opioid use and people sharing needles.
While I was there, the city dismantled and with the help of the media dismantled the harm reduction in the syringe exchange program. The night I was there after this was dismantled, you saw the largest number of people at this free testing site be diagnosed HIV-positive.
It was a direct cause and effect that as if you get rid of the thing that works, which is harm reduction, you actually harm people and make it worse. That's my two cents. This is really a kind of great question. Is each of you, is there someone or a group young folks that are inspiring to you taking action, making social change that you might point to that maybe people in the audience should be tracking?
Peter Staley:
I'll go first. I'm very inspired by younger queer activists these days, which unlike ACT UP, which was definitely had a diversity problem. We were over 90% white two years into our movement. A majority of those who were being infected in New York City with HIV were African-Americans.
There was a real disconnect that we were very aware of and I think we worked hard to compensate for. I see a lot less of that now in AIDS activism. I find that very inspiring, especially among young queer activists involved in HIV. Especially, the young HIV-negative gay men who are some of the leading activists now in HIV prevention.
They got angry because they were seeing their friends become HIV-positive in the last 10 years, even though there's a drug on the market that blocks that, blocks HIV transmission by 100%. That made them angry. HIV prevention activism is really driven by queer millennials in the U.S.
The only reason I wake up every day and I get beyond the cup of coffee and depression is because they're in the game and leading the fight. Find those people and pick your movement. Start creating change.
Requel Lopes:
I'll piggyback that. I think that is so true that in every generation, it's the youth, the young people that we look to really motivate the change that we want to see in the world. Yes, I took that from Gandhi, but I also think that we need to look into our communities of color who are equally doing the work.
This may not give you getting the mainstream coverage that people expect to see. It's interesting, this guy, who's a professor came to the museum and he was unaware of the work that was being done in communities of color. His comment was absolutely true is that, "He's searching the mainstream media."
No offense, Linda, but there wasn't a lot. The last time there was something in one of our mainstream medias was in the '90s and a person said, "Once you do this series, what are you going to do next?" The answer to this particular media group said, "Well, we just report it. We don't really do it."
I thought, "Hmm." Whether that is true or not, there are people who are journalists who actually do it, who do continue to talk about it. That seemed like a bad answer so that it was not something they wanted to cover again. They felt like they did their job by doing it once.
I think that's young people and even people of a certain age, I don't want to age anybody here, but that are still in the game wanting to make changes that we're going to have to educate and help prepare our next generation who have technology that we may or may not have had when we were starting.
Technology is helping propel how activism is looked upon nowadays. Youth and technology and collaborative efforts between generations are really going to move the needle forward. I bet you can find it in your own backyard wherever you are in the world, that people are doing that in the youth are doing it. You just need to look for it.
David France:
That's such a great answer. Thank you. Requel, if there's one organization that has given me hope and inspiration over these last couple of years, it's Black Lives Matter and the movement for Black Lives. When the pandemic hit, I really was despairing about America and what could be salvaged.
What could be defended in America against this incredible transformative moment in our healthcare and in our economy, and in our social lives. It wasn't until the BLM folks took to the streets that I felt there was potential that there was a possible new America that would be built around better ideals.
We've seen this with BLM that was built in large part on some of the successes and insights and inspirations of the HIV/AIDS movement, just as the HIV/AIDS movement was built on the queer movement before the feminism movement, before that the anti-war movement, the civil rights movement.
This rolling of accumulation of clever dedication to social justice is reaching a real significant zenith in this movement today. I wish we read more about them. I know that the agenda for the Black Lives Matter movement is as broad as any that's ever been taken up about addressing every systemic aspect of American trouble and devising ways to improve it.
For that, I find myself truly inspired. For the first time in a number of years, very hopeful.
Linda Villarosa:
I wanted to throw in this group called the Institute for Healing & Justice in Medicine. It's these medical students at UCSF in Berkeley, they're going to Berkeley Public Health School, who in undergraduate were radicalized by the Black Lives Matter movement.
Went into medical school wanting to be different kinds of healthcare providers. Even while going to medical school, they're educating other medical students around the country, across the country to be better future doctors, to not go in with the prejudice and discrimination mostly implicit bias.
To really examine that and to examine the way some of their textbooks and to turn away from stigmatizing and discriminating against groups, whether it's queer people, people of color, and those who are just not like them. I'm really amazed by them and their energy. Well, thank you.
This has been a really illuminating panel. It's so good to be in conversation like this. You've left us all with much to think about and also much to do. I like that we closed on that idea of who are the young folks that are energizing us, but I think those of us here we're not exactly young, but we are part of an intergenerational movement.
We're not done. I hope that today has inspired you and engaged you, and made you think so. Thank you very much.
Sabrina Sholts:
I will say thank you all for your thoughts and your experiences and your wisdom. Thank you to our audience for being with us and joining us in this conversation. I think that we all learned a lot. The last thing that I will say is that you will see in the Q&A link to a survey.
Please, if you have a moment respond. Let us know what you thought about this. It's going to help us improve our programming and deliver more conversations like the one we had today. Thank you all very much. Have a great day and take care and stay well.
