[NEWS CLIP, Bill Clinton: My fellow Americans. If the 21st century is to be the century of biology, let us make an AIDS vaccine its first great triumph.]
Simone Polanen: That’s our first Black president, Bill Clinton. Those are Toni Morrison’s words, not mine, okay? Just, Google it.
Simone: It’s June 1997 and President Clinton is giving a commencement speech at Morgan State University in Baltimore, Maryland. And he’s got quite a big announcement to make…
[NEWS CLIP, Bill Clinton: Today. Let us commit ourselves to developing an AIDS vaccine within the next decade. [applause]]
Simone: Americans weren't used to hearing their president make such a call to action about AIDS -- or the Acquired Immunodeficiency Syndrome. It had been recognized as a disease for over 15 years by this point… and had already infected over eleven million people around the world… But there hadn’t been an Operation Warp Speed-style push for an AIDS vaccine. So Clinton publicly calling for one, that held a lot of weight.
[NEWS CLIP: [applause]]
Simone: And then, a year later…
[NEWS CLIP, reporter: Good evening, the U S food and drug administration gave the go-ahead today for the widest human testing yet of an experimental AIDS vaccine. This is a whole new approach…]
Simone: On June 3rd, 1998, Just 23 years ago this week AIDSVAX VAX004 made history. It became the first potential AIDS vaccine to reach the final stage of testing before approval. It was a very different time than the one we're living in now. But even this familiar expert weighed in... with his signature cautious neutrality…”
[NEWS CLIP, Dr. Anthony Fauci: It would be folly for me to say, I'm optimistic that this is going to work and equally so would it be for me to say, Oh, this definitely is not going to work. We don't know.]
Simone: That one’s for you, Fauci-hive.
Simone: From Gimlet Media, this is Not Past It, a show about the stories we can’t quite leave behind. I’m Simone Polanen. Every episode we take a moment from that very same week in history -- and tell you the story of how it shaped our world.
Simone: Today, we’re gonna break down why we still don’t have a vaccine for AIDS. We’re gonna take a look at the science -- so you can call me doctress -- but we’re also gonna take a deeper look at the narrative surrounding that pandemic. Because it has a huge bearing on how people were treated… and I’m not just talking medically. That’s coming up.
Simone: So, not to flex, but I’ve never had chicken pox. And I’m not saying that to be like “I’m not like other girls, I’m different.” Because, I’m actually quite a lot like MILLIONS of other girls. The chicken pox vaccine came around when I was a baby and these days, kids don’t really get chicken pox. Or smallpox. Or polio. Or any of that stuff. And we have vaccines to thank.
Simone: Today, humans live almost twice as long as we did 100 years ago. And we’re protected against all these viruses that used to kill millions of people a year. In our public health arsenal, vaccines are the big guns. Or maybe… more accurately… the tiny little guns… injected into our bodies… supercharging our immune system… into a mighty disease-fighting army.
Simone: So when a new infectious disease comes onto the scene… like COVID-19… we turn to vaccines to slow the spread or eliminate it entirely.
Simone: In 1981, AIDS was a newly recognized infectious disease. There were early clusters of cases, mostly among gay men — so people started calling it “gay cancer.” In these early years, authorities didn't know how it was spread -- or even what exactly was causing it.
[NEWS CLIP, Margaret Heckler: Good afternoon, Ladies and Gentlemen.]
Simone: Then, in 1984, Reagan-era Secretary of Health and Human Services Margaret Heckler called a press conference:
[NEWS CLIP, Margaret Heckler: First, the probable cause of AIDS has been found… a variant of a known human cancer virus… we now have a blood test for AIDS…]
Simone: Researchers figured out that a virus was causing AIDS -- eventually dubbed, as you know, HIV - the human immunodeficiency virus. At this same press conference, Heckler set a goal: she wanted to develop an AIDS vaccine and start testing it within 2 years.
Simone: They ended up doing it in three. The first HIV vaccine trials in the United States came about in ‘87. Over the years, a few more took place in the US and abroad. But the first one to actually reach Phase III trials, the final crucial stage of large-scale human testing -- came in 1998.
[NEWS CLIP, reporter: It's down to the wire for the biotech firm, VaxGen, the only company to bring the testing of an AIDS vaccine to its final stage.]
Simone: That’s our gal -- AIDSVAX VAX004.
[NEWS CLIP, reporter: Today’s approval of the FDA to begin testing of an AIDS vaccine is the most promising sign yet that people may one day be immunized against the disease. The vaccine was developed after 17 years by...]
Simone: For this final stage, over 5,000 volunteers agreed to test the vaccine over the course of several years. The participants were people with an elevated risk of contracting the virus -- most were white gay men, and some women -- predominantly Black and Latina -- many of whom had HIV positive partners.
[NEWS CLIP, interviewee: Measuring success is very straightforward. Do the individuals who get the vaccine have less HIV infection than those that don’t?]
Simone: For a vaccine against any disease, it’s a big deal to make it to this stage. For HIV/AIDS, it was even more so. Because it’s an especially challenging disease to create a vaccine for.
Simone: The way vaccines, typically, work is that a small amount of a virus -- watered-down enough for the immune system to handle -- is injected into the body. When the immune system attacks that small amount of the virus, it creates antibodies -- it learns how to recognize the virus -- so it can fight off any amount of it in the future. But you can’t actually do that with HIV.
[NEWS CLIP, reporter: Previous efforts to create a vaccine have been thwarted by the virus’s complexity and unique ability to evade the immune system.]
Simone: That’s because of the sneaky ways HIV behaves in the body.
Dr. Sten Vermund: HIV sits in a quiescent mode in a protected parts of the body, like lymph nodes, for example. And the immune response doesn't kill all the HIV because a lot of it's hiding out.
Simone: I spoke with Dr. Sten Vermund, Dean of Yale’s School of Public Health. He’s an infectious disease epidemiologist -- say that three times fast -- and at the time of AIDSVAX, he headed up the AIDS vaccine trials branch of the National Institute of Allergy and Infectious Diseases.
Simone: Sten says, your body can’t fight off a virus it can’t see.
Dr. Sten Vermund: There is an immune cell called the T helper cell. And T-helper cell is one of the most vital cells in the human body to fight off invaders. And that's the cell that HIV infects. It goes into the very cell that's designed to find it and attack it.
Simone: No offense, but it’s pretty effed up how this virus operates. It spreads between people through certain bodily fluids, like blood, semen, or breast milk. It then hijacks these very important immune system T-cells, rendering them useless. It takes control of their DNA, creates copies of itself -- and takes off into the bloodstream where it keeps hijacking more of these important immune cells. How is a vaccine supposed to stimulate protection with a pernicious little virus like that?
Dr. Sten Vermund: So it's been devilishly difficult to figure out a vaccine strategy against HIV because of this characteristic of it getting into the human being and very quickly evading the immune system.
Simone: On top of the way HIV eludes the immune system, it also mutates like crazy -- quickly changing its genetic code. So for vaccine developers, it’s essentially a moving target.
Simone: But if they could crack the vax, they could save millions of lives.
Simone: In the Phase III trials for AIDSVAX two-thirds of the participants were given a series of seven injections over three years, while the other third were given the same number of a placebo. Then, in 2003, the results were published:
[NEWS CLIP, reporter: A US biotechnology company called VAXGen had conducted the first major study of an AIDS vaccine. Today, they published. ABC's Ned Potter on the disappointing results.]
[NEWS CLIP, Ned Potter: The Vaccine was called AIDSVAX…]
Simone: After thousands of volunteers and hundreds of millions of dollars, it was official. AIDSVAX VAX004 had failed.
Simone: AIDSVAX didn’t produce enough of an immune response to justify approval. The people who got the vaccine during the trials basically had the same immunity as those who had taken the placebo. That’s to say: the vaccine was about as effective as taking nothing.
[NEWS CLIP, scientist: It's now 23 years into the epidemic. I think the real tragedy is that this is the first vaccine that has gone through wide-scale testing.]
[NEWS CLIP, scientist: The future research will continue.]
Simone: That’s the story of the failed AIDSVAX. Seems straightforward, right? A new disease shows up, scientists try to fix it, they fall short, and go back to the drawing board. If you’re only looking at the clinical results, that is the story. But these researchers weren’t just up against the complicated science, they were up against a slew of other interests: political interests, economic interests, cultural interests.
Simone: And unfortunately, the people caught in the middle were the ones who should have been at the center of attention -- the people with HIV. People like Richard.
Richard Berkowitz: I went to my doctor who I often saw regularly for sexually transmitted disease checkups. We wanted to be responsible, you know and, I said to him, you know, am I going to die?
Simone: To understand the full story of AIDSVAX, let’s take off our lab coats and goggles and step into the real world.
Simone: That’s after the break.
Simone: Welcome back. Before the break, you heard the story of how AIDSVAX VAX004 -- the most promising AIDS vaccine of its time -- failed. But vaccine development doesn’t happen in a vacuum. So what was going on in the broader culture? And what was it like from the perspective of someone who actually had AIDS?
Simone: We’re going back to the 80s to tell another version of this story, but this time, we’re going to look at what was happening outside of the lab… And our first stop is the Big Apple.
Richard Berkowitz: I've lived in Manhattan, y’know, Greenwich Village in New York City for the last 42 years. I'm still in the same apartment.
Simone: That’s Richard Berkowitz. He’s a writer and an activist… and I’m assuming pays the lowest rent in New York City. He co-wrote a booklet called “How to Have Sex in an Epidemic”... in 1983. The story of the AIDS crisis is also his story.
Simone: When Richard moved to Greenwich Village in 1978, he found a thriving queer community. It was something he could only dream of as a kid in New Jersey.
Richard Berkowitz: Coming into the city as a teenager, I'd see gay men kissing on the street and that alone was life-changing, the notion that there was a place where gay men of all different backgrounds, where they didn't have to hide who they were and they weren’t ashamed to be who they were was absolutely life changing.
Simone: Richard settled into a life in the village. He studied at NYU for a while but had to drop out because he couldn’t afford it. He started sex work to make some extra money -- think, leather, whips, chains… Rihanna S&M vibes.
Richard Berkowitz: Most of it wasn’t actual sex it was more about psychological fantasies. And I learned so much about all the different ways that people can experience and could express their sexuality. Then suddenly AIDS started to appear.
Simone: These were the early days … before people were even using the term “AIDS.” Richard watched as many of his friends started to develop rare and mysterious illnesses. Otherwise young and healthy people were getting very sick and dying.
Simone: In the media, they talked about it like it was a “lifestyle disease.”
[NEWS CLIP, reporter: The lifestyle of some male homosexuals has triggered an epidemic of a rare form of cancer.]
Simone: Like I mentioned earlier, most of what was known was that the disease was spreading quickly among clusters of gay men. But also sex workers, and people who used intravenous drugs.
[NEWS CLIP, interviewee: Most of these people that they're not fit, they're not human beings. They have emotional problems]
[NEWS CLIP, reporter: Investigators have examined the habits of homosexuals for clues.]
[NEWS CLIP, man: I was in the fast lane at one time in terms of the way that I lived my life. And now I'm not]
Simone: And then in the summer of 1981, Richard started to notice his lymph nodes were swollen. His doctor urged him to get a blood test and a biopsy.
Richard Berkowitz: I said, have a gland cut out of my neck? I was mortified. And he said, it's the only way to know if you have something. And I'm like, I have something like what?
Simone: The tests revealed Richard had a number of health concerns including Hepatitis A, Hepatitis B, and a viral infection.
Richard Berkowitz: These are all the classic symptoms of the early onset of AIDS. And I basically went to bed for three days and was convinced I was dying.
Simone: The Centers for Disease Control and Prevention had officially labeled A-I-D-S an epidemic. In the fall of '82, reporters were looking for more information from the government. But as you'll hear in this next exchange - between a reporter named Lester Kinsolving and deputy White House Press Secretary Larry Speakes - they weren't getting much. The reporter speaks first.
[NEWS CLIP, Lester Kinsolving: Does the president have any reaction to the announcement of Center for Disease Control in Atlanta that A-I-D-S is now an epidemic. Over 600 cases. It's known as 'gay plague.’ [laughter]]
[NEWS CLIP, Kinsolving: It’s a pretty serious thing--one in every three people who get this have died. And I wonder if the president is aware of this.]
[NEWS CLIP, Larry Speakes: I don't have it. Are you? Do you? [laughter]]
[NEWS CLIP, Kinsolving: You don’t have it. Well I’m relieved to hear that Larry. [laughter]]
[NEWS CLIP, Speakes: Do you?]
[NEWS CLIP, Kinsolving: Well I’m delighted.]
[NEWS CLIP, Speakes: Do you?]
[NEWS CLIP, Kinsolving: No I don’t.]
[NEWS CLIP, Speakes: You didn’t answer my question. How do you know?]
[NEWS CLIP, Kinsolving: In other words the White House looks at this as a great joke?]
[NEWS CLIP, Speakes: No, I don’t know anything about it, Lester.]
[NEWS CLIP, Kinsolving: Does the president? Does anybody in the White House know about this epidemic, Larry?]
[NEWS CLIP, Speakes: I don’t think so.]
[NEWS CLIP, Kinsolving: Nobody knows?]
[NEWS CLIP, Speakes: There’ve been no personal experience here Lester. [laughter]]
[NEWS CLIP, Speakes: No patients have suffered from A-I-D-S or whatever it is.]
[NEWS CLIP, Kinsolving: The president doesn’t gay plague is that what you saying? Or what?]
[NEWS CLIP, Speakes: Nope, I didn’t say that.]
[NEWS CLIP, Kinsolving: Didn’t say that?]
[NEWS CLIP, Speakes: I thought I heard you at the State Department over there. Why didn’t you stay over there?]
[NEWS CLIP, Kinsolving: Because, because, I love you Larry.]
[NEWS CLIP, Speakes: Oh I see. Let’s don’t put it in those terms, Lester.]
[NEWS CLIP, Kinsolving: Oh! I retract that! [laughter]]
[NEWS CLIP, Speakes: I hope so.]
Simone: This tape is hard to listen to, but it’s not surprising. I mean, Ronald Reagan himself refused to even say the word “AIDS” in public. For years.
Simone: And this dismissive and derogatory attitude wasn't just coming from the White House briefing room. That sentiment had permeated.
[NEWS CLIP, William Dannemeyer: Homosexuality is a sin.]
[NEWS CLIP, reporter: California Republican, William Dannemeyer leads a group of conservative Republicans who hoped to make AIDS a political issue.]
[NEWS CLIP, reporter: To prohibit those with aids, from working in health care, to make it a felony for those in an aids high risk group to knowingly donate blood and to prohibit children with AIDS from attending school.]
[NEWS CLIP, reporter: The good news that aids may be leveling off in the gay community is tempered for some by a new fear that this virus could spread to straight America.]
Simone: This narrative around AIDS had a real impact on the research on being done. Scientists at the CDC complained that funding was inadequate, which was hampering their progress. They only got their first federal dollars when it was coupled with Toxic Shock Syndrome and Legionnaires Disease in a larger Public Health Emergency Trust Fund. In a 1983 memo, one CDC staffer wrote that the lack of funding “presumably deepened the invasion of the disease into the American population.”
Simone: By the end of 1984, there had been nearly 8,000 AIDS cases and over 3,500 AIDS deaths in the US. It’s around this time that Richard first heard about the possibility of an AIDS vaccine.
Simone: Do you remember, like when you heard the news of a possible AIDS VAX, what, do you remember your reaction to that?
Richard Berkowitz: I’d become cynical about vaccines because from 1984, when president Reagan, secretary of health, Margaret Heckler, held this big press conference, declaring that the cause of AIDS had been discovered. She concluded by saying, and we should have a vaccine in one to two years.
Simone: This press conference Richard's talking about -- it's the same one we told you about at the top of the show… When Heckler announced that ambitious goal to start a vaccine trial within two years.
Simone: Richard’s doctor told him not to get his hopes up. That this is how the game was played…
Richard Berkowitz: This is how money gets raised. This is how funding gets released. This is how you have to talk in public to the corporations and the government institutions that have the funds to get money released. And it wasn't that they didn't want to get a vaccine. It's that you've got to be a salesman and you've got to sell things. And so they sold it.
Simone: But Richard says -- when you sell a promise you can’t deliver on, you don’t just disappoint people at risk… you could be putting them in even more danger.
Richard Berkowitz: They raised a lot of people's hopes with no basis for doing that. “Oh my God. That could be a vaccine in two years. I'm going to be okay. Maybe I don't need safe sex.” And nothing came out of it in two years. And then in three years, another company came out, handed out press releases, had press conferences.
Richard Berkowitz: Every year, there was some institution or business, you know, coming forward, raising people’s hope that they have the lead on some research that's going to produce the HIV vaccine. And none of it went anywhere.
Simone: Over the next decade, the public narrative around AIDS started to shift little by little…
Simone: AIDS activists were doing a lot of work on the ground. Some were spreading resources and information. Raising awareness through events like World AIDS day. Some were actively pushing back against the misinformation being spread about the infectious disease — like that you could get it from swimming in a public pool or using a public restroom. Others were protesting in the streets, fighting against discrimination and lack of action from the government. Meanwhile, a series of very public stories captured the public’s attention, starting with the death of Hollywood heartthrob Rock Hudson in 1985.
[NEWS CLIP, Roger Grimsby: Good evening. I'm Roger Grimsby. Here, now the news. Actor Rock Hudson dead. His year-long battle with AIDS at an end. He was 59. Hudson died quietly in his sleep…]
[NEWS CLIP, reporter: Ryan White, the Indiana teenager who gained widespread celebrity support from Hollywood in his fight against AIDS died yesterday in an Indianapolis hospital…]
[NEWS CLIP, Magic Johnson: Because of the HIV virus that I have attained, uh, I will have to retire from the Lakers. Uh, today.]
Simone: NBA superstar Magic Johnson came out as HIV positive in 1991, one year after the death of teenager Ryan White. AIDS was moving from the “fringes” of society to the more mainstream. During this time, AIDS also continued to spread outside of the US. But especially across sub Saharan Africa -- where by 1993, as many as 9 million people were infected with HIV.
Simone: As for Richard … he had managed to stay relatively healthy since he tested positive in the 80s -- but by ‘95, he was starting to see his health deteriorate, fast.
Richard Berkowitz: My blood counts began to plummet. And I just thought, well, I made it to 40 years old. Maybe this is all I'm going to get.
Richard Berkowitz: I had my living will made up, drawn up. And I just thought, this is it. But in late 1995, they started opening up study sites to give people this new protease inhibitor.
SIMONE: Protease inhibitors were an experimental new drug treatment for HIV. Richard got enrolled in a study. And began taking them.
Richard Berkowitz: My blood counts started jumping back towards the normal range. And in two months, my blood counts were close to normal. I felt reborn.
Simone: These drugs are able to stop or slow the rate at which HIV makes copies of itself in the body. They basically stop HIV from multiplying.
Simone: It wasn’t the perfect solution—in the early days, some of these meds had really intense side effects… and they were complicated to take. But it really felt like they were saving people’s lives.
Richard Berkowitz: Within a year, the New York Times, Sunday magazine published an article by Andrew Sullivan: “AIDS. Is it over?” And what it really meant was for wealthy people and white people, it was. We now had a manageable disease that could be controlled by medications. If you had healthcare. If you had health insurance.
Simone: By the late 90s, AIDS stopped being an immediate death sentence to those with access -- the wealthy, the famous, the insured.
Simone: And this brings us back to Bill Clinton’s announcement at Morgan State University. He was pushing for a vaccine within the context of all of this. Medications were already starting to save people’s lives. So calling to focus efforts on a vaccine… people felt like it was counterproductive…
[NEWS CLIP, reporter: Part of the president’s proposal is to take 30-50 NIH researchers from existing programs and re-assign them to vaccine research. That drew immediate criticism from AIDS activists who fear that resources will be taken away for the search for a cure.
[NEWS CLIP, activist: It leaves us with the real possibility that we will be robbing Peter to pay Paul.]
Simone: So when the AIDSVAX VAX 004 trials came around the following year in ‘98, Richard was over it.
Richard Berkowitz: It was like, oh no, here we go again, we were desperate for something hoping it would work.
[NEWS CLIP, reporter: Researchers are working on a dozen other potential AIDS vaccines. Next time they pray they will do better.]
Simone: In the years since AIDSVAX, there have been multiple attempts at an AIDS vaccine. And they’ve all failed. But the science is ongoing. Moderna -- the makers of one of the COVID-19 jabs -- is sending their HIV vaccine into Phase I trials this year. And when it comes to drugs, there’ve been revolutionary new meds - like PreP, a daily pill that prevents transmission up to 99%.
Simone: But a vaccine would still be a game-changer. Especially, Richard says, in communities that may not have great access to meds...
Richard Berkowitz: There are still tens of thousands of people in rural America where hospital and healthcare has been decimated by budget guts. People stuck in certain prisons, are denied HIV medication.
Richard Berkowitz: There are immigrants who don't have access to healthcare who get infected with HIV. There are people without health insurance who live really, um,horribly impoverished lives. People are still getting infected and people are still dying of AIDS. That's America, we don't always see the whole picture.
Simone: The HIV/AIDS crisis continues…
Simone: It continues in the gay community, in the trans community, it continues in rural America and across parts of Africa, it continues among people who use intravenous drugs. AIDS still claims around 700,000 lives per year.
Simone: In some ways, we’ve come a long way from the days of the giggling White House Press Briefing Room. But the stigma implanted in the culture from the very beginning - it remains in many ways. Celebrities like Billy Porter and Jonathan Van Ness have publicly come out as HIV positive in an effort to reduce that stigma, but they’ve shared that this was after years of agonizing over the decision.
SImone: I wonder if there’s a lesson we’ll take from a universal experience like COVID that we don't seem to have taken from the 40-years-and-counting AIDS pandemic. Ending a crisis for some is not enough. And our comfort with the loss of certain people: I hope we now have the fortitude to confront that.
Simone: Not Past It is a Spotify Original, produced by Gimlet and ZSP Media.
Simone: Next week we’ve got a story about a pitcher who throws the game of his life while tripping on LSD.
[ARCHIVAL TAPE, Dock Ellis: She said what’s wrong with you? I said, I’m high as a Georgia pine. [laughs]]
Simone: This episode was produced by Kinsey Clarke, and Sarah Craig. Our associate producers are Julie Carli and Jake Maia Arlow. The supervising producer is Erica Morrison. Editing by Andrea B. Scott, Abbie Ruzicka, Zac Stuart Pontier and Lydia Polgreen. Fact checking by Jane Ackermann. Sound design and mixing by Bobby Lord. Original Music by SaxKixAve, Willie Green, and Bobby Lord. Featuring “You say you’ve done this before” by Gerald Busby. The theme song is Tokoliana by KOKOKO! With Music supervision by Liz Fulton. Technical direction by Zac Schmidt. Show art by Elise Harven and Talia Rochemann. The executive producer at ZSP Media is Zac Stuart Pontier. The executive producer from Gimlet is Abbie Ruzicka. Special thanks to Emily Bass, Lydia Polgreen, Dan Behar and Clara Sankey. Liz Stiles and Nabeel Chollampat.
Simone: Follow Not Past It now to listen for free, exclusively on Spotify. I'm Simone Polanen. Thanks for hangin’. See you next week.