Greg Gonsalves keynote on the history of HIV and AIDS: transcript

Key points

• Gonsalves has been an AIDS activist for about 35 years and has lived with HIV for about 30, kept healthy by antiretroviral therapy.
• In the 1980s there were no effective treatments, survival after diagnosis was about a year, and stigma and discrimination were severe.
• He joined ACT UP and pushed government and drug companies for research; AZT and similar early drugs did little good.
• Protease inhibitors and combination therapy in the mid-1990s caused AIDS rates to plummet, and a trial drug saved his life.
• Access stayed unequal in the US and globally until activists in South Africa, Thailand and Brazil demanded affordable drugs, leading to PEPFAR and the Global Fund.
• He says recent US cuts to USAID, PEPFAR and the CDC threaten gains, and urges listeners to organize and press governments.

Chapters

1. 0:00Gonsalves introduces his life with HIV
2. 1:08The 1980s: no treatment, funerals and stigma
3. 3:13ACT UP and the failure of early drugs
4. 5:26Protease inhibitors change the epidemic
5. 7:26Inequalities in access in the US
6. 8:34Global activism, PEPFAR and the Global Fund
7. 11:16Current funding cuts and the danger of reversal
8. 12:47A call to organize and fight for political will

Full transcript

0:00Hi, everyone. My name is Greg Gonsalves. I am an associate professor of epidemiology at the Yale School of Public Health. More importantly for today's discussion, I have been an AIDS activist for close to 35 years, and I've been living with HIV for just shortly under that, about 30 years. I want to take you through a tour of history and the AIDS epidemic, past, present, and future. You know, as I said, I've been HIV positive, well, going on 30 years at least.

0:33And I'm here today because of the drugs I take every morning called antiretroviral therapy. In my case, it's a combination of integrase inhibitors and some other drugs. But I want to take you back to sort of the dark days of the pandemic. In the 1980s, when I was a high school student and then a college student, the situation was far bleaker than it is today. Many of you don't remember those times firsthand, but I can tell you it was frightening to come of age when a new disease was sweeping among the gay community and for the first few years we had no idea what even caused it.

1:08And there were never any treatments really available until 15 years into the pandemic. So the 1980s were a very, very devastating scene of carnage, of people going to funerals. Again and again and again. I remember living in the East Village in the beginning of the 1990s and going to funerals a couple of times a month while friends of mine had a more devastating experience of the pandemic and were burying friends week to week. But we had no treatment back then and if you look back at the history of the pandemic, people were scurrying around to try to free our ways to keep themselves and their friends alive.

1:44first people were grasping at cures that they heard from friends on the street or friends in their in their social circles or in the New York native or other LGBTQ papers in New York City but these were destined not to have any effect and some of them really didn't do much good at all even if they did a little bit of harm people were cooking up egg lipids in their bathtubs they were trying different kinds of um uh alternative and holistic remedies but nothing worked the the average length of life after an aids diagnosed in the united states in the in the 1980s was was a year or so um so once you you had a diagnosis of hiv there was not much uh longer you were going to live and you you settled your affairs um as best you could remember we were living under.

2:37A lot of stigma and discrimination then. Families couldn't come to see their, partners couldn't go see their lovers in the hospital. Funeral homes wouldn't accept bodies. People could be fired from their jobs, evicted from their house just because they're HIV positive. Things were bleak. The first drug to treat HIV infection, AZT, came out in the late 1980s. It had maybe a minimal effect, but it certainly didn't stem the devastation that we saw in those early years of the pandemic. You know, my first experience with HIV was with a former boyfriend who was HIV-positive.

3:13And when I found this out in the late 1980s, we squirted around to find information about how we could keep him alive. And I happened to find myself amidst a group called ACT UP, the AIDS Coalition Unleashed Power, and found myself within that group working with people who were interested in research and development of new drugs, treatments for opportunistic infections that actually kill people living with HIV, and we pushed the United States government and drug companies to do better and to do more for HIV. And by the end of that decade, there were a few other drugs related to AZT that came about towards the end of the 1980s, beginning of the 1990s. Again, excuse me, none of them did much good.

4:05And there was a great sense of terror and despair even to the early 90s in the United States. I remember friends of mine talking to each other back then and saying, you know, we're all going to be dead. That was the kind of devastating feeling we had even as drugs like AZT with other kind of alphabetical names like DDI, D4T, DDC came on the market. Nothing seemed to work. Even the drugs that prevented or were treated opportunistic infections, such as drugs for PCP pneumonia, for fungal infections, except were only giving people a few months more additional time as their immune systems continued to collapse under the weight of HIV and its destruction of the core immune cells that keep us in our immune systems, guarding the CD4 cell, the CD4 lymphocyte.

4:54But it was a devastating time. I don't think it's possible to explain it to people who didn't live through it. It was akin to living through a war in which, as Vita Rusya said, only the people who seemed to be in the trenches knew that it was happening. Other people didn't really recognize what was going on. That was the scale of this devastation. When we got to the middle of the 1990s, something remarkable happened. Over the course of a couple of years, the entire shape of the epidemic changed in the United States.

5:26There were drugs called protease inhibitors that were being developed. Early in the 90s into clinical trials. They were developed based on existing drugs called renin inhibitors, which had been developed for other kinds of conditions. But as the data started coming in, something remarkable seemed to be going on. In combination with other drugs, the older drugs I talked about, AZT and its cousins, there seemed to be a remarkable ability for this new combination therapy or highly active antiretroviral therapy to suppress HIV.

6:00completely and let people's immune systems assure themselves fast forward in my life it's 1995 or so and i just lost my cousin carl um he had disseminated aspergilliosis which was a fungal disease um and pcp um and he died in 1995 um as did a friend of mine a good friend of my my own and my former partner mark harrington jay funk also died of pneumocystis carinia and pneumonia and and Kaposi's sarcoma that year. That was the year that everything changed though. That's when I got my diagnosis. Again, wasn't sure about what was going on in the world. The promise of these drugs had not been borne out yet, but I was lucky to enroll in a clinical trial of a drug called nilfinivir, one of the early protease inhibitors which had some terrible side effects, gastrointestinal side effects, I'll spare you the details, but that saved my life.

6:54I was able to take these new drugs just at the time I knew I was HIV positive, even though my infection probably was a little bit older than 1995. But I started taking these drugs, which I take all the way through to 2025. It's a remarkable 30-year course of basically controlling a virus that for 15 years is uncontrollable in most bodies around the world. And in 1995, 1996, 1997, you saw AIDS rates plummet in the United States.

7:26People were no longer dying from the disease, they were living with it. This created inequalities in different settings. In the United States, people who had health insurance, who had access to medical care, could easily get these drugs. It turned their lives around and they got up from their sickbed, so they were able to resume their old lives. and the pandemic for many people, quote-unquote, was over. But for many people, it was not over. People without access to regular medical care who did not have health insurance or people who simply did not know their status until they got too sick to benefit from the drugs themselves.

8:03These fractures in the response to protease inhibitors followed the social geography of the United States as the epidemic became more and more under control among gay white men in New York City in Los Angeles and San Francisco, the virus headed south to black and brown MSM in the south and in rural communities. In which the AIDS epidemic exploded in the 90s and the 2000s. And it's still the epicenter of the epidemic as we talk about it today. So we talked about disparities in the U.S.

8:34But what we were realizing in the late 1990s and early 2000s is that the bulk of the epidemic was not happening in the U.S. It was happening all around the world. The United States had a small epidemic compared to the epicenter of the international epidemic was happening in sub-Saharan Africa. activists and people living with HIV around the world were saying why do people like myself and my colleagues have access to these drugs when the people who actually need these drugs the most have no ability to get them. Why?

9:05Because largely they were they were thousands and thousands of dollars which were far beyond the private means of most people around the world and the public means of health systems across the world. So what happened in the late 1990s early 2000s is activists from South Africa, from Thailand, from Brazil started to speak up and say we want these drugs we demand them we didn't demand that the cost of these drugs be reduced and they yoked in people like myself and others from Europe and North America to join them in it in a crusade to ensure that access to these medicines was not a matter of privilege but a right and to and there was a call to end the medical apartheid that was a hallmark of the late 1990s early 2000s in terms of the AIDS epidemic and we had great champions back then too Along with community members. We also had people like Nelson Mandela Bill Clinton and others who spoke out on behalf of people living with HIV to push for their Inclusion in this new revolution in AIDS treatment that it started in the US and in Europe and new

10:11program first started President Bush remarkably and surprisingly started the President's emergency plan for AIDS relief which has saved millions and millions of lives kept millions and millions of people from being infected with the disease global actors stepped in there's a new group called the global fund to treat AIDS TB and malaria to fight AIDS TB and malaria was formed as a multinational organization a multilateral organization with support from all around the world world, which again underwrote HIV, TB, and malaria treatment for millions of people around the world again.

10:45And so the early 2000s were a heady set of days for many of us, where we saw AIDS controlled in many settings in the US and in Europe, and we saw greater, greater access to these drugs across the world, going from a few hundred thousand people outside of the US with access to these medicines to now. Tens of thousands, hundreds of thousands, millions of people, tens of millions of people who have access to these drugs, you know, within a short few years.

11:16The problem is that these gains have never been, we've never been able to keep this momentum going. And what we see nowadays is that the fruit of all the work we did from the 1980s to the 1990s to the 2000s fighting for antitiviral therapy and TB and malaria treatment of the world is in deep danger of going in reverse. As many of you know in the United States President Trump has basically destroyed USAID, which was the backbone of the infrastructure of many HIV programs around the world. He decimated the President's emergency plan for AIDS relief, a program that Republicans and Democrats in the United States have have had bipartisan support for years. Even the end the HIV epidemic in the U.S.

12:08which is an initiative President Trump started in his first term has been decimated by their destruction of the CDC and other agencies that have been central to managing the epidemic in the United States. And so that's a rapid trip through the history of the AIDS epidemic from a very personal perspective, but I think we need to think about its future. And the future is that we are not going to go backwards. And the big danger right now is that the United States is abandoning its role as a leader in the fight against HIV in a way that is destroying most the ability of national programs to treat and prevent the disease locally.

12:47It's an abrupt total withdrawal of support has made the chance for new infections to rise rapidly, new deaths rise rapidly, all but certain across the planet. And so what can we do? We have to figure out how to get ourselves back on track for an end of the AIDS epidemic, both in the U.S. and globally, and that means we need to organize. The Vanyan comrades I had in the early days of the AIDS epidemic can act up. The friends I had in South Africa with the Treatment Action Campaign or Grupo Pelle Vida in Brazil or the Thai Treatment Action Group in Thailand or front aids in places like Russia, the Delhi network of people living with AIDS. I can go on and on. There are hundreds and hundreds of people around the world who fought the good fight to keep AIDS treatment available to those who need it around the world and expand the franchise to ensure that more and more people get access to these drugs and live.

13:41Healthy lives, free of the virus, at least in terms of its most devastating effects on our immune systems. But we need your help now. I'm 62 years old. When I started these drugs in my early 30s, I didn't think I'd be alive to tell you this tale today, but I am here. But I need to pass the baton to everybody who's listening to this talk and say, you need to talk to your government. You need to do more than that. You need to fight for people who are in severe danger of losing their battle against HIV, as many of my friends and family did in the early 80s and the early 90s.

14:17It's up to you to carry the torch now to make sure that we have the ability for governments around the world to provide the health care that their citizens and their residents need. And that's going to mean a fight. It's going to mean getting up off the sidelines, doing the work to make sure that we have a world free of AIDS. And we have the tools to prevent this epidemic, we have the tools to treat this epidemic, we have the tools to stop this epidemic, and it's all come down to political will. And if the U.S. is not going to lead, the rest of the world needs to step up and take its place.

14:49Meanwhile, here in the U.S., join us in fighting for a renewed commitment to HIV. President Trump will not be here forever, and we need to pick up the pieces and build back better than we did when we started this so many years ago. Thank you very much.

Source and licence

Recording: File:Greg Gonsalves keynote speech at the WMLGBT+ World AIDS Day 2025.webm by Wiki Media LGBT (2025-11-29), via Wikimedia Commons. Licence: CC BY 4.0.

The transcript is machine speech-to-text by the TidyTools Audio & video transcriber; the summary, key points and chapters were written by Claude from that transcript. Both may contain errors: check the recording before quoting it.