Jon Cohen: [00:00:00] Thank you for that very nice introduction. I have 20 minutes, so I'm going to race through my slides. If you've been at the meeting, you'll see that my talk is very different from everything that's been presented. If you haven't, it's fine. You don't need to know anything about HIV to follow what I'm going to talk about. This is a word cloud I made of words that I've learned over the years covering HIV.
I first wrote about HIV in 1986. I was interviewed on Fresh Air in 2004 by Dave Davies [00:00:30] who was sitting in for Terry Gross. (1) Before we went on the air, he asked me, "How should I introduce you?" I said I'm an AIDS reporter. He started laughing and he said, "What's that? Really? You call yourself an AIDS reporter?" And his question really struck me because I had never thought twice about it for many years. There used to be a lot of people who covered the epidemic.
From that first era, I'm kind of the last one standing. Why have I covered it this long? I ask myself [00:01:00] that question. And it's because it's the most fascinating story for a journalist that I could possibly imagine. It touches every aspect of science, every aspect of society, and it has taken me to about 50 countries. Much of what I'm going to show you is based on my travels and what I've seen. But much of it simply about the journalism that has occurred and the main stories that have attracted journalists. You'll find there's a theme in journalism [00:01:30] that I think many people misunderstand. And it's conflict. Conflict drives narratives. It's used in Shakespeare, it's used in poetry and it's also in journalism. Conflict is not negative. It's things you don't know. It's ideas hitting each other and sometimes it is controversy and scandal.
This is the first report, which many people have shown at this meeting of AIDS. (2) And what many people haven't shown is that it was buried in the MMWR, the Type 4 [00:02:00] dengue infection in US travelers to the Caribbean took precedence. I think that's interesting. The word homosexual, I learned at this meeting, was taken off the title.
This is the first day that the MMWR appears. The story does not appear in major newspapers. It is not in The New York Times. It's not in the Washington Post. This is from the Santa Cruz Sentinel. "Pneumonia strain linked to homosexual lifestyle." (3) That's a wire story from AP. This is the [00:02:30] first New York Times story, July 3rd 1981, when there's a second report in MMWR about a rare cancer seen in 41 homosexuals. (4, 5) Now we've gone from pneumonia to cancer.
Larry Speakes (White House press secretary, 1981–1987): What's AIDS? Never heard of that.
Lester Kinsolving: Over a third of them have died. It's known as gay plague. [laughter] [00:03:00] No, it is. It is a pretty serious thing that one in every three people that get this have died, and I wondered if the President is aware of it?
Larry Speakes: I don't have it. Do you?
Lester Kinsolving: You don't have it. I'm relieved to hear that, Larry. [crosstalk]
Larry Speakes: Do you? You didn't answer my question. How do you know?
Lester Kinsolving: Does the President-- In other words, the White House looks on this as a great joke?
Larry Speakes: I don't know anything about it, Lester.
Jon Cohen: I dug up the old transcripts from three of the first presidential [00:03:30] press conferences about AIDS. They're all equally repulsive. That's how the federal government, at the highest level, responded to the epidemic when it surfaced. That's Larry Speakes (1939–2014) who's speaking for President Ronald Reagan (1911–2004).
This is the first report of the virus being isolated. (6) That's Françoise Barré-Sinoussi, who's here. This appeared in Science in May of 1983. I didn't have access to the French media so I don't know how much they [00:04:00] reported this.
This is a month later. It's the New York Native which had a long campaign questioning whether HIV indeed was the cause of AIDS. African Swine Fever Virus was one of many possibilities that the New York Native argued was causing the epidemic.
This is the first major US magazine cover that I could find about the epidemic. [00:04:30] Note that it's "mysterious" and "deadly." Those are two keywords for journalists that we use again and again when outbreaks and epidemics surface. "Mysterious" and deadly drives many stories including Zika, microcephaly, why is Ebola exploding in West Africa—Those are things that attract a lot of attention.
This is the most famous scientific press conference of all time, I believe, on April 23rd 1984. (8) [00:05:00] The day before it occurs, The New York Times runs a story that says that the French have discovered the cause of AIDS.
Then there's a press conference at which Bob Gallo, who's here and helped organize this meeting is with Margaret Heckler (1931–2018), the secretary of Health and Human Services (HHS). She's made a goat of frequently for having said, supposedly, that there will be a vaccine in two years. That's not really what she said. What she said is there will be a vaccine [00:05:30] ready for human testing within two years. An equally irresponsible statement, because it did create a false impression that this was going to be a chip shot, this was going to be simple. Edward Brandt (1933–2007) who was there, the assistant secretary, did say there would be a vaccine in the market within a few years, but she didn't. Bob Gallo, that day, said at the podium, "There has never been any fights or controversies between us and a group in France," which, in retrospect, proved not to be true. [00:06:00]
Randy Shilts (1951–1994) who published And The Band Played On in 1987 wrote about the before and after moment. (9) He was writing about when AIDS came in to everyone's life. Everyone had a before and after moment, in the gay world, especially, because their lives were ripped asunder by this epidemic. But there's also a before and after moment in the scientific world, and it's the day after this press conference, when the practical solution start moving forward. The scientific charge to [00:06:30] develop a blood test and get it on the market, to develop drugs, to develop a vaccine. Those are the after moments to me. It's after the cause is proven.
The Wall Street Journal boldly says that there's a race to develop an AIDS vaccine. (10) That was a myth. There never was a lot of industry interest in doing this. Companies came and went. It says, charmingly, a Nobel prize to the winner. This is in September of '84. This is still based on the idea [00:07:00] that many people had that it was going to be easy.
Rock Hudson (1925–1985) makes the epidemic famous in a way that it hadn't been before these days, but note that the first story about Hudson the day before it's revealed that he has AIDS is about him having liver cancer. (11) I believe that was misinformation put out by his publicist, but the next day, he went public or it became public.
The first AIDS vaccine trial [00:07:30] took place in Zaire. It was not reported at the scientific meeting, it was not reported in the scientific journal. It was reported in The New York Times. (12) It was Daniel Zagury, a friend of Bob's. Bob said that, "If anybody stumbles on a way to open the door, it might be this guy because he has a good smell for what's going on, but he said he wouldn't do similar things because he'd be afraid to do it, of having troubles." That turned out to be prescient, as I'll get to in a minute. He did have troubles later because of these studies. [00:08:00]
AZT comes out, approved in March of 1987. (13) That's Robert Schooley, Chip Schooley (b. 1949) who said "a lot of people should be happy about this." A lot of people were, but it also led to a lot of anger and a lot of frustration. In part, because of what the drug sold for, it was very expensive, in part because people didn't have access, in part because it didn't work that well. As you can see, by October of '87, there were already stories about [00:08:30] people wasting away despite the drug. (14) It had become popular within a few months that this drug had limited efficacy.
There is a cold peace between President Ronald Reagan and Jacques Chirac (1932–2019) brokered by Jonas Salk (1914–1995) to stop a feud that occurred over the blood test patent and the royalty money. (15) That occurred after the US press conference. A lot of [00:09:00] lawyers on both sides of the pond fighting over this. I say it was a cold peace, because Jean-Claude Chermann (b. 1939) who's part of the original French group that Françoise worked with, said in this article, "I cannot help thinking deep inside of me that it was a surrender." So there are people who in that moment who are at the front are not happy about the peace agreement.
This is from the book Covering the Plague, one of the few books that looks at journalism and AIDS coverage [00:09:30] it came out in '92 from a Los Angeles Herald Examiner reporter, a paper that no longer exists. (16) He just charted, with the CDC's help, the number of stories that had occurred. As you can see, there's a very steep increase from '82 to 88.
This is one of the most unusual newspaper articles I've ever seen. (17) It ran 16 full pages in the Chicago Tribune. It was written by investigative reporter, John Crewdson. It resurrected the feud between [00:10:00] the French and Americans over who discovered the virus. Made Bob Gallo's life difficult, I think that's fair to say, triggered investigations by the NIH, by Congress.
Tony Malliaris: This is a story of a coalition, my interpretation, my rendition of ACT UP, the AIDS Coalition to Unleash Power, the NIH on its final hour. Can you say it with me, Storm the NIH. Let's go. Storm the NIH. [00:10:30] This is war. For the sick. For the poor. Act up. Fight back. Fight AIDS.
Jon Cohen: ACT UP by 1990 had become a very large and powerful movement. They had already shut down the FDA. They had shut down Wall Street, and on May 21st, 1990, they shut down the NIH for all intents and purposes. There were police riding on horseback. I was there that day. A lot of it was comic, [00:11:00] in ACT UP's way, and Tony Fauci, who's head of the largest AIDS Institute in the US government said it was, "Interesting theater, but it was not helpful," but he also said, "These are intelligent, gifted, articulate people coming up with good, creative ideas." (18) Tony Fauci really had started to create a bridge between activists and the scientific community that didn't exist, and that day they burned him in effigy and several other leaders, which is why he said it really wasn't helpful because there were a lot of scientists [00:11:30] who were reluctant to become involved, and Fauci believed that the activism was pushing people away.
That's me in 1991 at the International AIDS Conference (in Florence, Italy) when I had a lot more hair and I show this picture because I was in a press room at the conference filled with a few hundred journalists, 20 of them, I would say, made the AIDS epidemic their main beat. I was terrified constantly of being scooped by these incredibly good reporters [00:12:00] and I was routinely scooped.
I just went to the International AIDS Conference in Durban, South Africa, this summer. The New York Times I don't think was there, The Wall Street Journal, The LA Times, The Washington Post, all of my former colleagues and competitors, their institutions didn't even send people. The interest in AIDS has plummeted from that period of time, when worldwide there was perceived to be a great story to tell. [00:12:30]I would argue that the story now is possibly more compelling than ever.
These three people, Magic Johnson (b. 1959) and Kimberly Bergalis (1968–1991) and Ryan White (1971–1990) in the United States made AIDS a popular disease. It could happen to anyone, to, "Innocent people," because the whole stigma and discrimination that had happened with gay men, well, it couldn't apply to hemophilia, it couldn't apply to a young woman [00:13:00] who goes to her dentist. It couldn't apply to our favorite famous sports stars who was heterosexual, none of it fit with the earlier narrative. And it created a sense that this could happen to anyone, it created a sense that you should care about this, even if you really don't like homosexual people, which was part of the narrative up until that point and largely driven by a political—portion of the political leader leadership that [00:13:30] reinforced that narrative again and again.
There also was a rise of another type of advocacy. This was a lobbying campaign to steer $20 million to a therapeutic AIDS vaccine trial, but the scientific community had not collectively said they wanted to see—that it wanted to see happen and indeed it outraged many people when I wrote this story and exposed the lobbying campaign that had taken place behind the scenes to put $20 million into the defense department budget to run a trial [00:14:00] that scientists hadn't decided was worth running. (19) And it was led by a company that hired Russell Long, the son of Huey Long. And the whole thing was it was, as I quote a researcher saying it, it was, "An incredibly outrageous move," but that's the level this had gotten to. The epidemic had so attracted concern now that you could hire a lobbying team as a company and try to steer money into your own coffers to get around a very established peer [00:14:30] review system that says scientists should decide collectively how to spend public money like that.
The doom and gloom was incredible. The 1993 AIDS Conference in Berlin. This is in Washington, D.C. and the NAMES project. This is the Quilt, if you've never seen this. These are people who have died, quilts in their honor. This is just the United States, but doom and gloom was everywhere because the drugs that were on the market weren't working very well. AZT had, I think an 18 month survival benefit in [00:15:00] combination with other drugs that had come forward. There was a little bit more of a bump, but people were still dying routinely and it was still considered a death sentence.
The Crewdson article led to an investigation of Gallo where he was found guilty of misconduct. And later all charges were dropped. And the appeals board that essentially wrote the final verdict said, "One might anticipate that from all this evidence, after all the sound and fury, there would at least [00:15:30] be a residue of palpable wrongdoing. That is not the case." (20, 21) So that's how that story ended. After a great deal of time and effort to fight a battle that to many people at the front had been settled earlier.
I went to Thailand in 1995. This is somebody dying from AIDS. It became apparent by the mid 1990’s that this was a global problem, and that the antiretrovirals were limited in much of the world [00:16:00] and in terms of access. Their effect, as I mentioned, was limited. And every place had its own epidemic. In Thailand it was largely an epidemic driven by injecting drug use, heterosexual sex work, and also men having sex with men.
There was this hope surge that occurred in the mid 90’s. Every journalist loved to do the hope story about the vaccine. I put it on top of the Obama poster. The [00:16:30] doom and gloom ends in 1996, the first report that I saw publicly of drugs working, was it the retrovirus meeting in February and you could see by those two curves that people were living in a way that they hadn't before, and the idea of eradicating the virus came to the fore. (22, 23) The idea of cure became a topic that was no longer a dirty word, or as dirty.
The champagne was completely uncorked. The New York Times: "When AIDS Ends," (24) "The End of AIDS," [00:17:00] and David Ho was the man of the year on Time magazine. (25) There was a Berlin patient that many people forget about it. This is Berlin patient number one and he had gone on the drugs and gone off the drugs and the virus didn't come back. (26) So there was this talk of, maybe you don't have to take the drugs for life, especially if you treat people early enough, Bruce Walker had studied him, I believe, Bruce, didn't you? It raised a new possibility that was very exciting. [00:17:30]
At this point in time, the major science puzzles had been solved. The low hanging fruit had been picked. We knew how the virus got into cells. We knew the epidemiology, what was driving it and these drivers of spread were the same. Each country had its own collection of these drivers, but we knew how the virus moved from place to place.
We knew at this point, by 1999, we knew the narrative of the origin, and the origin story has attracted a tremendous amount of media attention. It came from chimpanzees, [00:18:00] we know that it probably came from Cameroon, moved down the river to Kinshasa—hunters probably, these are hunters I met in Gabon, and it moved down to Kinshasa, a major new city, and took off there.
These are all people I met dying from AIDS post 1996, all over the world. These are all different countries. All these people are dying, none of these people have access to any antiretroviral medication. [00:18:30]
And the mothers were still infecting newborns all over the world and orphanages were still filled and that bottom picture is a trial that proved that you could take one pill of nevirapine to prevent mother to child transmission, or to increase the odds of not transmitting. Very simple intervention. But it was desperate, because since 1994, there had been a known, proven intervention that just couldn't be used in most of the world because it involved an intravenous [00:19:00] drip, and it just wasn't practical.
And all of this fueled an AIDS denialism movement. the AIDS denialist movement said HIV didn't cause AIDS. (27) Peter Duesberg (b. 1936) was head, that's me talking to Kary Mullis (1944–2019) who won the Nobel prize for PCR, and Kary and I arguing about this. Then I got into a fight with—When President [Thabo] Mbeki (b. 1942)was President of South Africa, I got into a fight with Parks Mankahlana, the head of his press office, who- his spokesman, and he told a lie. [00:19:30] He said that he never met with me, that's a picture taken in his office that my photographer took when I met him at their white house, which I had to get in with documents and everything and he lied and said he had never met with me and that I had created the story and I said, "It's all on tape." I had it on tape, but then I wasn't allowed to play the tape for legal reasons, which caused another problem.
Then in Durban, in 2000, everything changes because there was a movement to get drugs that are working to the world. The evidence that these drugs are working is overwhelmingly [00:20:00] powerful and clear, and the Global Fund and PEPFAR are born, two large financial mechanisms and bilateral mechanism to get drugs out to people, and today there are 17 million people in poor countries who have antiretroviral drugs, largely because those programs were born.
The first vaccine efficacy trial, completely different headlines in the news, very confusing, until this day there remains debate about most [00:20:30] results from efficacy trials of AIDS vaccines, except for one where it clearly didn't work and possibly even—or probably did end up infecting people.
Activism has gone global now. Everybody's picked up on the ACT UP tune, and there's an era of fine-tuning. The first generation of good drugs are causing lipodystrophy, camel hump. There are many pills people have to take every day, and there's resistance. So things have improved greatly [00:21:00] since this period of time, because now you can take a pill a day and you don't need to take drugs that cause these side effects and as people have reinforced here, repeatedly, resistance rarely happens if you take your drugs every day.
I did a story for The New York Times magazine in 2006, about pre-exposure prophylaxis. (28) The idea that you can take a daily pill to prevent infection, like you would take an anti-malarial if you were going to a malarial region. I don't know what the scientific optimism website is, but they said, "Why not give AIDS drugs to everyone, Jon Cohen's bright idea." It wasn't my [00:21:30] bright idea, and this ended up proving itself and it's now a staple in prevention.
Timothy Ray Brown (1966–2020), on the left is the only person who's been cured of HIV and he's Berlin patient number two, that's how he was known for quite a while. (29) I would urge all scientists to refer to him as Timothy Ray Brown, that's his name, he's public about things. And on the right is a man who has tried to take advantage of what was learned from Timothy by receiving a cell infusion that does a similar thing to what was done for Timothy, of crippling [00:22:00] his CD4 cells so that they become resistant to HIV infection.
The evidence that treatment works as prevention comes out in 2011, in a study that shows that in couples where one person's infected, they don't transmit to their partner if they're on drugs and the virus is undetectable. (30) Basically it had 96% success, which leads to this idea that we have the tools to end AIDS epidemics and San Francisco, New York state, [00:22:30] they have blueprints of how they want to do this. They're actually ramping up greatly to try and end the epidemics. Right here in New York, it has one of the most progressive plans to end an epidemic, South Africa is even discussing it. (31, 32) South Africa has 19% of the infected people in the world.
And I just want to emphasize something. I did a book where I spent two years going to Tijuana regularly to meet with people who were infected or who are at risk. People are still dying from AIDS. You can see San Diego [00:23:00] from Tijuana where I live. I watched this man die, never having seen a doctor, never having had access to antiretroviral drugs. I put a recipe together of how to end the AIDS epidemic at the end of my book about the Tijuana situation, and I did this in part to be a little cheeky to say, "We all know how to do this. You might quibble with some of the things in my recipe. (33) You can change it if you're the cook, but you're really not going to argue all that much, and I could get it onto a single page."
Now we have these high hanging [00:23:30] fruit. This is my last slide. The challenge is now to find a vaccine, to find a way to use antibodies that are going to work against every strain. The challenge is to design proteins that can work as a defense or to get rid of reservoirs and people in the sanctuary. These are all very hard to do. The reason HIV persists at this point in time is because it's a really difficult bug to make a vaccine against, and it's a very difficult [00:24:00] bug to cure. It's not because people aren't trying to do these things. It's that the low hanging fruit I believe had been picked.
So I had kept this up on my wall for a long time. (34) I wrote a book about the search for an AIDS vaccine. (34) This is the day that the polio vaccine was announced effective, and the first sentence as the world today learned that its hopes for finding an effective weapon against paralytic polio had been realized. I want to write that sentence one day about the AIDS vaccine, and I'm going to stick with it until I get to. I [00:24:30] hope that people here who work on AIDS vaccines hurry up because I'm getting older. And I have a lot of people to thank, but mainly the meeting organizers, Science magazine, which has supported my work for many years, the photographers and artists who I've borrowed from here and everyone who's given me their time to tell me their stories or to teach me about science, so thank you very much. Sorry I went over.
Anders Vahlne (Moderator): Thank you very much.
[00:24:56] [END OF AUDIO]
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- Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press, 1987.
- Chase, Marilyn. “The Race to Develop Vaccine Against AIDS Mobilizes Researchers.” The Wall Street Journal. September 4, 1984, Eastern Edition edition.
- “Hudson May Have Liver Cancer.” The Baytown Sun. July 24, 1985.
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- Cimons, Marlene, and James Gerstenzang. “U.S., France to End Legal Dispute, Share in Patent Rights for AIDS Test.” Los Angeles Times, April 1, 1987. https://www.latimes.com/archives/la-xpm-1987-04-01-mn-910-story.html
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- 2.4 Robert Gallo — Discoveries of Human Retrovirus, Their Linkage to Disease as Causative Agents & Preparation for the Future
- 6.3 Bruce Walker — Role of T Cells in Controlling HIV Infection
- 8.2 David Ho — Unraveling of HIV Dynamics In Vivo
- 9th International Conference on AIDS, Berlin, 1993
- 13th International AIDS Conference, Durban, 2000
- ACT UP (AIDS Coalition to Unleash Power)
- activism, civil rights, protests, and social movements
- AIDS Quilt, NAMES Project
- antibody test, antigen test, serological test, serology
- antiretroviral therapy (ART)
- AZT (azidothymidine)
- Bergalis, Kimberly A. (1968–1991)
- Berlin patient, Timothy Ray Brown (1966–2020)
- Brandt, Edward Jr. (1933–2007)
- Caribbean and West Indies
- CDC (Centers for Disease Control and Prevention, US)
- Chermann, Jean-Claude (b. 1939)
- chimpanzee (Pan troglodytes)
- Chirac, Jacques (1932–2019)
- clinical trials (phases of clinical research)
- Congress, US
- credit, priority
- dengue virus
- Department of Health and Human Services, US
- Duesberg, Peter H. (b. 1936)
- early names for AIDS — gay cancer, gay pneumonia, GRID, 4H, KSOI, slim disease, etc.
- Fresh Air (radio talk show)
- gay men, gay community
- Global Fund to Fight AIDS, Tuberculosis and Malaria
- Heckler, Margaret M. (1931–2018)
- HIV vaccine
- Hudson, Rock (1925–1985)
- intravenous drug use
- Johnson, Earvin "Magic" Jr. (b. 1959)
- Mbeki, Thabo (b. 1942)
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Found 7 search result(s) for "Jon Cohen" OR "Cohen, Jon".
... you some of his work with the Face of AIDS archive. My other colleague Jon Cohen has himself donated the research materials for his book to the University of Michigan. 00 ... ...
Apr 27, 2021
... data together convinced us that we have the right molecule for the Tcelltropic cofactor. Jon Cohen had an article on this in the issue of Science. (11) We got some nice responses ...
Apr 27, 2021
... https://libwiki.cshl.edu/confluence/pages/viewpage.action?pageId=12943566 8.2 David Ho — Unraveling of HIV Dynamics In Vivo https://libwiki.cshl.edu/confluence/pages/viewpage.action?pageId=12943576 9.1 Jon Cohen — Responding to AIDS: A Journalist's View https://libwiki.cshl.edu/confluence/pages/viewpage.action?pageId=12943592 Session 10: What Have We ...
Mar 06, 2021
... 41:16. John: Like the president of the United States. Bob: This is clear obligation of Jon Cohen. It’s your obligation now. Jon: No one answered her question by the way. Bob: 30 years from now ... ...
Apr 27, 2021
... 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 ...
Apr 27, 2021
... Preparation for the Future https://libwiki.cshl.edu/confluence/pages/viewpage.action?pageId=12943622 2.5 Françoise BarréSinoussi — Discovery of HIV https://libwiki.cshl.edu/confluence/pages/viewpage.action?pageId=12943624 9.1 Jon Cohen — Responding to AIDS: A Journalist's View https://libwiki.cshl.edu/confluence/pages/viewpage.action?pageId=12943592 5th International AIDS Conference, Montreal ... ...
Apr 27, 2021
... September 1, 2016): 830–39. doi:10.1056/NEJMoa1600693 https://doi.org/10.1056/NEJMoa1600693. 25. Cohen, Jon. “HIV Treatment as Prevention.” Science 334, no. 6063 (December 23, 2011): 1628 ... ...
Apr 27, 2021
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