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Mark Harrington: I'd like to thank the organizers very much for the introduction to speak here. Also, I'd like to thank the gentleman in the AV room for helping me to turn my talk into a PowerPoint, which began with a photo stream. My talk today is dedicated to my ex-lover Jay Kevin Funk, who was born in Framingham in 1958 and died in New York City on February 9th 1994, which I learned last night was also the day that Howard Temin died. Another weird [00:00:30] coincidence in the AIDS epidemic.

Mark Harrington is an HIV/AIDS researcher and activist, and is founder of the Treatment Action Group (TAG)

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Jay and I both grew up on opposite coasts during what I now call the antibiotic bubble era, or the era when we thought that all infectious diseases were on their way to being conquered. I remember getting the Salk vaccine as a kid or maybe the Sabin vaccine. It was thought to be a big deal because, "Hey here's another disease you're not going to get." We grew up under that protective belief. Last night, we also heard that a lot of science was being done in the '60s, '70s, and '80s that really [00:01:00] helped to pave the way for a much better response to the AIDS epidemic when it finally emerged.

I also want to point out that the '60s and '70s saw an outbreak of—really unprecedented since the Civil War—civil rights activism in the United States, and that led to civil rights, to the Voting Rights Act, to the women's rights movement, and then a little bit later to the gay rights movement. Just as the immunology and the virology communities were, to some extent, prepared, [00:01:30] although under-resourced for AIDS when it came along, it is very important to note in retrospect that the gay community had a lot more cohesion in 1981 than it did say if the outbreak had happened in the '60s or the '70s. Although it took quite a bit of time for this organization to really try to figure out how to engage with you, the scientists and a lot of my remarks are going to be attributed to the really strong alliances [that were] forged not without difficulty over the last three decades in our common struggle. [00:02:00]

There's me in June 8th, 1983, graduating from Harvard with my lovely parents who have always supported our work against this epidemic. I would just point out in reference to last night that this was about 18 days after Françoise Barré-Sinoussi's paper came out in Science magazine—although at that time I did not read Science on a weekly basis and so I wasn't aware of the important work that it described. (1) [00:02:30]

I was a California boy. Born and raised in San Francisco went to Lowell High School, which is a magnet high school for kids from all over the city. I was really interested in the humanities and history and literature. Although for some reason did very well in AP bio, AP Chem, but I took almost no science in college and mainly focused on why revolutions failed. We were about to be on the verge of a revolution of a very different kind.

After meeting [00:03:00] Jay and moving to New York City, I quickly became swept up in the activities of ACT UP, the AIDS Coalition To Unleash Power, and basically desperate attempts we were making to try to get the attention of the public, the media, and the government.

There was an emphasis on trying to discuss mistakes that were made and lessons learned. A couple that I would put out from the '80s for myself would be, one, don't vote for third-party candidates when you have your first election. I voted for John [B.] Anderson (1922–2017) in 1980, because I thought Jimmy Carter (b. 1924) was too conservative and we [00:03:30] ended up with [Ronald] Reagan (1911–2004). If the country had re-elected Carter, the response to the epidemic might have been a lot more rational, and a lot more well-resourced, and we might have been a lot further along than we were. Nonetheless, we had President Reagan and we had Mayor [Ed] Koch (1924–2013) another figure who didn't really want to do enough about AIDS. We, not knowing what to do, got trained in civil disobedience and we got arrested on Wall Street.

We also did demonstrations and posters about things like homophobia and the right to love. We [00:04:00]condemned government officials. Some of them still in this room. Apologies if we ever went overboard. Dr. Fauci.

I was involved and getting arrested in going into all these meetings and doing posters. I thought, "This isn't really going to get us to where we need to go." I thought we need to do something around science. I really believed that science was going to be how we would get our way out of this epidemic. At the time, we believed that the FDA [00:04:30] was reviewing and approving drugs too slowly and not allowing them to be made accessible to people who needed them before approval. We did a giant demonstration at the Food and Drug Administration headquarters campus on October 11th, 28 years ago, in 1988. This was a huge national demonstration with over 3,000 people, although it was very hard to get arrested there because the cops had been told to not touch us and they were all wearing gloves. They were afraid of touching us. [00:05:00]We made the news, and not only that we helped to persuade, with the aid of people like Dr. Fauci and also Dr. [Samuel] Broder, who's up in the upper row.

We were actually able to persuade the FDA within a single year to really change the way that they regulate drugs to allow earlier approval based on surrogate markers, even what turned out to be shitty surrogate markers like CD4 cells and changes in CD4 cells from single nuc [nucleoside] regimens; and to do the parallel track, which was a huge program to allow the second nucleoside ddI (didanosine/Videx, a nucleoside analog of adenosine) out to about [00:05:30] 35,000 people before approval.

That was a huge gamble on all our parts. It turned out to be a gamble that was worth it because when the clinical trials finally came through in '92, it was shown that ddI had a clinical benefit over long-term AZT and people who'd already been on the AZT for a while. We dodged a bullet there. Then leading to parallel track was—You know, demos are inherently more interesting to look at than reports, so I tried to put as many [00:06:00] demos into this slideshow in as few reports as possible.

But the real way that we got our work done was by the combination of the demonstrations and the reports, and using these reports like the "National AIDS Research Treatment Agenda" that we presented in Montreal in 1989 to figure out how to sit down and bargain with the scientists at NIH and FDA in industry. (1) These became important tools for us both—You can read them and cringe to see some of the things we were saying and demanding, [00:06:30] like a placebo is nothing more than a form of medically sanctioned Russian roulette, or some of the drugs that we may have been asking for that didn't have any known mechanism of activity and didn't work when they were finally tested by NIAID. But there was some other stuff in there like parallel track that actually turned out to be workable and usable.

The next step after the FDA was really the NIH. Tony [Fauci] had come up to ACT UP treatment and data committee. He had been very open to listening to us, and here's another mistake that was made [00:07:00] in the '80s, which was not to put more money into studying the opportunistic infections and cancers earlier, because we could have had pneumocystis prophylaxis five years earlier than we did. But we found out that the AIDS clinical trials group at the NIH wasn't really so hospitable to us as Dr. Fauci had been personally, and so we decided to do another massive national demonstration there on May 20th, 1990.

In here, you see me doing a little die-in with the "healthcare is a right" and wearing the biohazard [00:07:30]medical jacket that we had done for wave three doing a die in. As I was saying, the Paul Volberding a couple of minutes ago, we're actually still glad to be here and not to have to do die in's all the time anymore. We use smoke bombs. It was considered to be very dramatic, but we told the NIH police in advance and they were okay with it. The most noteworthy thing that came out of the storm, the NIH demonstration, was that Dr. Fauci really ordered the ACTG [AIDS Clinical Trials Group] to let the activists and people with HIV [00:08:00]attend the meetings.

From then to now, a hallmark of the AIDS research effort has been that every clinical research network—and some of even the basic science networks, like the Martin Delaney Collaboratories, have community involvement. This is not only in the United States but it's worldwide. I think it's a new template for activists and people living with the disease to work with the scientists who are concerned with that disease.

Over the next couple of years, as ddI and then ddC (zalcitabine), d4T(stavudine), and 3TC (lamivudine) came on the market, it became really clear [00:08:30] that single drugs were not the answer. Indeed, that we didn't know enough about what was happening with HIV inside of the cells of our own bodies. In April of '92, I submitted myself to a lymph node biopsy by Donald [P.] Kotler and Giuseppe Pantaleo. Giuseppe jumped into the plane and went down to Bethesda where it was chopped up by Cecil [H.] Fox and Jan [M.] Orenstein. They put some insightful hybridization on it and they found out some the green signal is HIV and that looks like an infected [00:09:00] T-cell in a lymph node.

Then here's a picture with a bigger, wider focus, showing a lymph node, where the white indicates HIV particles. You basically see that in a single lymph node of my body in mid-'92, with a CD4 count of 600, but an inverted CD4+/CD8+ ratio, my body is crammed with virus. Meanwhile, as I just told you, my immune system was doing fine. There was a mismatch between what we understood about HIV and what we needed to understand. [00:09:30]

This led Gregg Gonsalves (b. 1963) and me, by then we left ACT UP and formed Treatment Action Group along with some of our colleagues like (Patrick) Spencer Cox (1968–2012) and Peter Staley (b. 1961) to really hypothesize that the way forward in AIDS research was going to be through emphasizing the importance of basic science.

We put forward a proposal to reform the way that NIH AIDS research was done, to strengthen the [NIH] Office AIDS Research to give it the ability to budget across the institutes in accordance with the scientific strategic [00:10:00] plan. Here you see me in an uncharacteristically well-dressed outfit giving a press conference about that. We had released this report about the NIH about how it was both underfunded and uncoordinated and this later was turned into law by President Clinton. (2)

Something important for all of you to realize is that really basic science was the foundation of TAG's theory of change for the next few years, because we were unhappy with what was happening in clinical science. Gregg [Gonsalves] went around the country and interviewed [00:10:30] 36 basic scientists, and the report is still worth a read because it really shows you the importance of a whole bunch of different aspects of basic science to creating a comprehensive research effort to understand and eventually to control the epidemic. (3)

It's important to emphasize it, by '93, with the Berlin AIDS Conference and the failure of AZT and ddC dual therapy, the hopes that drugs were soon going to lead to a breakthrough were down at their very lowest. On the same day that we were in Berlin, President Clinton signed S1 which was the [00:11:00] NIH Revitalization Act [of 1993].

But quickly it became apparent that there was going to be problems with the next class of drugs, which, if, taken as a single drug, would, just like the nuc’s, lead to [drug] resistance within weeks. (4) We were worried that the protease inhibitors would be approved with an inadequate evidence-base, and so we asked that they do a better job on creating clinical trials that would give us better answers about the protease inhibitors. That led to a flurry of new trial designs, including the Abbott [Laboratories] trial [of ritonavir, RTV], which showed a 50% reduction in deaths in six months and led to full [00:11:30] approval in '96, the first approval of a new ARV [antiretroviral] based on clinical endpoints since AZT.

In the middle of all this, Jay Funk died of pulmonary KS (Kaposi’s sarcoma) in February 9th, 1994, the same day that as I mentioned before that Howard Temin had died. Other activists that we lost over that decade were Jesse Dobson, in the middle, from Project Inform, and Martin Delaney (AIDS activist, 1945–2009) on the left, who died in the 2000s of liver cancer. Luckily, Donald Abrams on the right is still with us. We continued to push forward on protease. (5) [00:12:00] We went to [the 11th International Conference on AIDS in] Vancouver and heard the exciting, amazing breakthroughs that happened there. (6) Many of us then who had an immune system that was intact started HAART (highly active antiretroviral therapy) as soon as we got home.

The next few years, we spent figuring out how to use the drugs, when they should be started, what the side effects were and drug regimens began to get easier. And then there was growing, growing pressure to treat people all over the world. The Durban AIDS Conference (2000) was [00:12:30] truly a historical turning point where once we had all met together, we would work together in solidarity forever with the Treatment Action Campaign (TAC) in South Africa and many, many other groups around the world where the epidemic was unimaginably worse than it was here in the United States.

We had leaders like Nelson Mandela (1918–2013) coming to tell [Abdurrazack] Zackie Achmat (b. 1962), the leader of TAC, that he needed to start his ARVs even before the government program started in 2003. South Africa now has the world's biggest ARV program with over three and a half million on ART (antiretroviral treatment), [00:13:00] and another three and a half million that need to go on it.

We started working on the TB (tuberculosis) pandemic because TB was resurgent because of HIV and the collapse of the Soviet Union and MDR-TB (multiple drug-resistant tuberculosis) outbreaking there. Here we have Madiba, we have health Helene [D.] Gayle (b. 1955) from the Gates Foundation, and there's little me in the back and we had just gotten a grant from the Gates Foundation to work on TB-HIV (coinfection), which we're still doing both domestically and globally.

Here's a TB-HIV working group meeting from the London School [of Hygiene and Tropical Medicine] in 2006. We did some important [00:13:30] work around a TB/HIV research agenda around diagnostic guidelines for smear-negative and extrapulmonary TB. Also importantly, in TB, where we don't have anything like the $1 dipstick (Abbott Determine antigen test), we did a lot of work around TB diagnostics, and here's a MGIT (mycobacteria growth indicator tube) machine, which it's a liquid culture machine that makes it a lot easier to grow TB and find out which drugs it's susceptible or resistant to.

Again here, the alliance with TAC was critical, and here you have a March for TB patients that you would never see in the United States because [00:14:00] there were more people at this march that we have with TB in the country, but as you know there, it's a huge problem.

And once Bob [Gallo?] was telling me that he thought we needed a PEPFAR (President's Emergency Plan for AIDS Relief) right here in the United States. At the AIDS Conference in Washington in 2012, Charles King from Housing Works and I both got arrested together and were put away into it 106° van. Decided that we would try to improve on President [Barack] Obama's National HIV/AIDS Strategy (2015) by using New York [00:14:30] as a laboratory to try to put together all the tools that we have, which include in our case, Medicaid expansion, ACA (Affordable Care Act) drug price reductions negotiated by Medicaid, roll out of PrEP (pre-exposure prophylaxis), roll out of fourth-generation testing, strong working with the community to create a blueprint to end AIDS is an epidemic in New York state by 2020, and to create a template for ending it in other jurisdictions. (7)

Secretary [Hillary] Clinton (b. 1947) has actually endorsed this approach, and if she's elected [to the presidency], as many of us may be hoping, she will appoint a task force similar to the one that [00:15:00] Governor [Andrew] Cuomo (b. 1957) appointed and basically reinvigorate the National AIDS Strategy with our goal to ending the epidemic in the next 10 years in our country. We now actually can go to the White House and not be arrested, which is another major nice thing that has come out of all this work.

In Durban, a couple of months ago, we had a wonderful reunion with some of the major leaders of Treatment Action Campaign who have really are some of the most unheralded heroes of this epidemic and whose work has just been Herculean [00:15:30] and for whose work I have the most immense respect.

Then finally, along with Jay [Funk], I would like to dedicate my remarks to Dr. William E. Paul (1936–2015) the Director of the Laboratory of Immunology at NIH at the NIAID; and also between '94 and '98, the Director of the Office of AIDS Research. It was under his leadership that AIDS research was greatly expanded under President Clinton, that HAART was discovered, that [ACTG Protocol] 076 came out, and the seeds were laid for the later [00:16:00] and very important trials that happened in the last 15 years, like HPTN 052 and iPrEx studies (of TasP and PrEP), and SMART (Strategies for Management of Anti-Retroviral Therapy study, 2002–2006) and START (Strategic Timing of Antiretroviral Treatment study, 2011–2016), which led to the recommendation to treat all.

We're halfway there, we have the tools, I think, to really greatly bring down the epidemic and maybe even ended in some settings, we still need much more funding for NIH across the board and for HIV research within that and we need to work all together to do that. I would like to thank you all and everyone that works with you from the bottom of my heart on behalf of the world's [00:16:30] 37 million people that are still living with HIV.

Also, on behalf of all those who made it because they too live longer and with more hope because of the efforts that you made. I believe that basic science is one of the most effective and beautiful investments that the American people or any other can make and I think we need to work together to revitalize basic science under the next administration. Thank you very much.

[applause]

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Mike Gottlieb (moderator): Thank you, Mark, it was excellent. Questions please, there are time for a couple. Robin.

Robin Weiss: Well…I just like to thank you and Jay for keeping us all conscious that it's not just science, that it's people and that we have to find new paradigms. [00:17:30] Thank you once again, Mark.

Mark: I think the important point there is that the science belongs to the people and people need to understand the science and we're living in an environment where there's hardly any science reporters left besides Jon Cohen. Really the last of his kind. Citizens have to understand science in order to interact meaningfully with it, or else you get AIDS denialists or vaccine denialists or what have you.

In our case, we're not cured yet, so we have to spend a long time learning the science, but for those of us lucky enough to be around, it [00:18:00] was worth it. We need to think about how to do a better job of making it easier for citizens to learn about and to participate in science.

Larry Corey: Mark, Larry Corey, you certainly have markedly changed in very effective ways what went on, and it's interesting to contrast the lack of activism in some other diseases like cancer, as to [00:18:30] why some things are not going quite as quickly or as efficiently as HIV. I do want to say a couple of things about what went on there with respect to not every activist movement was on point and I think that the reality of the activism as it related to AZT did have the fallout of delaying the 076 study for about two years.

Mark: That was one of [00:19:00] the reasons why ACT UP and TAG split because we supported the ACTG in doing the study and we thought the people who were opposing it were wrong and you're right, activists can do great harm.

The French activists who shut down the microbicide in PrEP trials in several countries, did great harm. There's no question that activists are just as flawed and human and likely to make mistakes as anyone else, including scientists.

Larry Corey: Just again, that story that we did have a lot of tension between [00:19:30] the people who felt that AZT was poison and the Brooklyn women who wanted it for their babies, and it took a long time to separate that out and actually we created the AIDS pediatric clinical trials group as the mechanism to get that separated out, but that took a while to delay that study for a couple of years.

Mark: Absolutely. [00:20:00]

Wasif Khan: I'll start so that we don't waste time. You really provided a beautiful example of how community and science can work together. I would like to ask you with your vast experience in this, what are the lessons we can learn to bring basic science to people, and, in reverse, get the communal input to science development? [00:20:30]

Mark: I think another lesson learned is that both in 1981 and also with Ebola and Zika, we found out that we didn't have the right structures in place to respond rapidly enough to an emerging disaster. It was only once the communities were fully involved in West Africa that the Ebola outbreak was able to be brought under control. Thanks to NIH and others were able to put candidates into trials a lot more quickly than we were able to in the '80s, but we still lacked the ability to really create [00:21:00] a drug or a vaccine at scale. We still lack the ability.

I think there had to be a lot of myths that were deconstructed in the course of educating communities in West Africa about Ebola. Basically, integrating basic science into life needs to start in kindergarten and it needs to be part of how we educate people, because science and technology are so critical to the way that our world is and the way that our world changes. We need to do a much better job of integrating that into our education[00:21:30] systems and also into other policy and political structures. Our Congress, obviously, by their response to Zika doesn't really understand anything, any of this.

Wasif: Basic science needs more community input like you do.

Mike: We have time for one more question. One short question in the back.

Sharon Hillier: This one is short. I'm Sharon Hillier from the University of Pittsburgh, I work in HIV prevention and thank you so much for reminding us that we have 37 million people today living with HIV. [00:22:00] For every two people going on to treatment in the developing world, three more become infected. We clearly have to, in some way, raise advocacy, the next generation of advocates. When you look around this room, we are all of a certain age, many of us. We have to think about how do we generate energy for the next generation of advocacy to take it to the next stage because we cannot take our foot off the pedal. Mark, what do you [00:22:30] think we need to do, to reach out to bring up the next generation of science and advocacy partnerships that can make this happen?

Mark: When we started doing the New York project in 2012, the community hadn't been galvanized around domestic prevention for so long, and we really essentially failed. Several generations of young gay men and young transgender women and young Black women and young Black people in our country, because we had an inadequate focus on prevention. Then [00:23:00] when prevention breakthroughs happen like PrEP or treatments-as-prevention (TasP), we didn't roll them out.

On the other hand, when we started the New York process bringing in young people and people that were pissed off about the status quo and wanted to help their own generation get away from the scourge, was really successful. What we did was, actually, we provided them with some hope, which was: we have this blueprint, if we can implement it, we can greatly bring down the epidemic. I think activism around any epidemics can give people both hope and a mission which can then lead to activism and appropriate [00:23:30] actions at the local, state, and national and global levels.

Thank you all again.

Mike Gottlieb: Thank you, Mark.

[applause]

[00:23:42] [END OF AUDIO]

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Citations

ACT UP. “A National AIDS Treatment Research Agenda.” V International Conference on AIDS, Montreal, June 1989. https://joeclark.org/dossiers/actup/agenda/agenda-edited.pdf.
Gregg Gonsalves and Mark Harrington, “AIDS Research at the NIH: A Critical Review” (New York: Treatment Action Group, July 20, 1992), https://www.treatmentactiongroup.org/publication/aids-research-at-the-nih-a-critical-review-part-i-summary/.
Gregg Gonsalves, “Basic Research on HIV Infection: A Report From the Front” (New York: Treatment Action Group, June 1, 1993), https://www.treatmentactiongroup.org/publication/basic-research-on-hiv-infection-a-report-from-the-front/.
Spencer Cox et al., “Rescuing Accelerated Approval: Moving Beyond the Status Quo, A Report to the FDA Antiviral Drugs Advisory Committee” (Silver Spring, Maryland: Treatment Action Group, September 12, 1994), https://www.treatmentactiongroup.org/publication/rescuing-accelerated-approval-moving-beyond-the-status-quo/.
David Barr et al., “Problems With Protease Inhibitor Development Plans” (Treatment Action Group, Gay Men’s Health Crisis, February 23, 1995), https://www.treatmentactiongroup.org/publication/problems-with-protease-inhibitor-development-plans/.
Mark Harrington, “Viral Load in Vancouver: A Report from the 11th International Conference on AIDS” (Treatment Action Group, 1996), https://www.treatmentactiongroup.org/publication/viral-load-in-vancouver/.
“New York State’s Blueprint to End the AIDS Epidemic” (New York State Department of Health, 2015), https://www.health.ny.gov/diseases/aids/ending_the_epidemic/docs/blueprint.pdf.

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