 Okay, I think it's... Hello? It's on. Okay, I think we'll have to start, because we have a quite a tight schedule. So I would like to welcome everybody to this last and also public session of a very productive and informative meeting that we've had for the last couple of days on HIV, AIDS research, its history, and future. So I will share this last session together with Dr. Warner Green from San Francisco. My name is Anders Valne and from the Kalinska Institute in Sweden. So this first hour we will have three presentations given by John Cohen, who is a journalist and science writer, by Stefan Hildebrand, who is a Swedish documentary filmmaker, and by Victoria Harden, who is a historian from ANIH. So first I then welcome John Cohen. He is a science writer and reporter, as I said, specialized in medicine, and is widely known for coverage of HIV and AIDS. Mr. Cohen has written four nonfiction books on scientific topics, and is widely published in magazines. He has been a reporter for science since 1990, and has also written for the New Yorker, Atlantic Monthly, The New York Times, magazines, Miss Union, Technology Reviews, and many other publications. So please, John. Thank you, Anders. Should I put on the lab? 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. And if you haven't, it's fine, and 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, who was sitting in for Terry Gross. And before we went on the air, he asked me, how should I introduce you? And I said, I'm an AIDS reporter. And 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. And there used to be a lot of people who covered the epidemic. At the time I was there, I'm kind of the last one standing. And why have I covered it this long? I asked myself 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. And much of what I'm going to show you is based on my travels and what I've seen. But much of it is simply about the journalism that has occurred and the main stories that have attracted journalists. You'll find there's a theme in journalism 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. And 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. And what many people haven't shown is that it was buried in the MMWR. The type 4 dengue infection in U.S. travelers to the Caribbean took precedence. I think that's interesting. And 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. A pneumonia strain linked to homosexual lifestyle. That's a wire story from AP. This is the first New York Times story, July 3rd, 1981, when there's a second report in MMWR about a rare cancer seen in 41 homosexuals. So now we've gone from pneumonia to cancer. Now it's from the Center for Disease Control in Atlanta that the IBS is now an epidemic of over 600 cases. It's known as gay plague. No, it is. It's a pretty serious thing. One in every three people that get this have died. And I wondered if the president is aware of it. I don't have it. Do you? I'm relieved to hear that. You didn't answer my question. How do you know? The White House looks on this as a great joke. I dug up the old transcripts from three of the first presidential 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 Speaks, who's speaking for President Ronald Reagan. This is the first report of the virus being isolated. That's Francoise Barrisinoce, who's here. This appeared in science in May of 1983. And I didn't have access to the French media, so I don't know how much they 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 slime 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. Note that it's mysterious and deadly. Those are two key words for journalists that we use again and again when outbreaks and epidemics surface. Mysterious and deadly drives many stories, including Zika and 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 23, 1984. 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, the Secretary of Health and Human Services. 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 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 Brent, who was there, the Assistant Secretary did say there would be a vaccine on the market within a few years, but she didn't. Bob Gallo that day was 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. Randy Schultz, who published and the band played on in 1987, wrote about the before and after moment and he was writing about when AIDS came into everyone's life. Everyone had a before and after moment in the gay world especially because their lives were ripped a thunder 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 solutions start moving forward. There's a massive charge to 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. That was a myth. There never was a lot of industry interest in doing this. Companies came and went and it says charmingly a Nobel Prize to the winner. This is in September of two years ago based on the idea that many people had that it was going to be easy. Rock Hudson 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. So 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 took place in Zaire. It was not reported at a scientific meeting. It was not reported in a scientific journal. It was reported in the New York Times. And it was Daniel Zagary who a friend of Bob's and 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 to be prescient as I'll get to in a minute. He did have troubles later because of these studies. AZT comes out approved in March of 1987. That's Robert Schooley, Chip Schooley 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 to the drug because it didn't work that well. As you can see by October of 87 there are already stories about people wasting away despite the drug. So 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 brokered by Jonas Salk to stop a feud that occurred after the U.S. press conference and it was a very high, a lot of lawyers on both sides of the pond fighting over this. And I say it was a cold peace because Jean-Claude Sherman who's part of the original French group that Francine 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 that came out in 92 from Los Angeles Herald Examiner reporter, a paper that no longer exists. And he just charted with the CDC's help the number of stories that had occurred. And 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. It ran 16 full pages in the Chicago Tribune. It was written by investigative reporter John Crudson and it resurrected the feud between 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. This is a story of a coalition of my interpretation, my rendition of ACT UP, the AIDS coalition to unleash power, the NIH on its final hour. So 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 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. So 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 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 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 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. I would argue that the story now is possibly more compelling than ever. This made AIDS, these three people, Magic Johnson and Kimberly Bergallis and Ryan White in the United States, made AIDS a popular disease. It could happen to anyone, to quote-unquote innocent people because the whole stigma and discrimination that had happened with gay men, well it couldn't apply to a hemophiliac. It couldn't apply to a young woman who goes to her dentist. It couldn't apply to our favorite thing as 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 leadership that 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 that scientists hadn't decided was worth running. And it was led by a company that hired Russell Long, the son of Huey Long, and the whole thing 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 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. in 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 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 Crudson article led to the 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 be a residue of palpable wrongdoing. That is not the case. 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-1990s that this was a global problem and that the antiretrovirals were limited in much of the world 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 a man having sex with men. There was this hope surge that occurred in the mid-90s. Every journalist loved to do the hope story about the vaccine. I put it on top of the Obama poster. The doom and gloom ends in 1996. The first report that I saw publicly of drugs working was at 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. 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, the end of AIDS and David Ho was the man of the year on Time Magazine. There was a Berlin patient that many people forget about. This is Berlin patient number one. He had gone on the drugs and gone off the drugs and the virus didn't come back. 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. 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. They had 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. We know that it probably came from Cameroon, moved down the river to Kinshasa. 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. The mothers were still infecting newborns all over the world and orphanages were still filled. That bottom picture is a trial that proved that you could take one pill of nivarapine 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 drip and it just wasn't practical. And all of this fueled an AIDS denialist movement. The AIDS denialist movement said HIV didn't cause AIDS. Peter Duesburg was the head, that's me talking to Kerry Mullis who won the Nobel Prize for PCR and Kerry and I arguing about this and then I got into a fight with the Mbeki, when President Mbeki was president of South Africa, I got into a fight with Parks Mankan Shlana the head of his press office who was a spokesman and he told a lie, 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 is a movement to get drugs that are working to the world. The evidence that these drugs are working is overwhelmingly powerful and clear and the global fund in 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 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 drugs, 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 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 from the New York Times magazine in 2006 about pre-exposure prophylaxis 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? Jung Cohen's bright idea. It wasn't my bright idea and this ended up proving itself and it's now a staple in prevention. Timothy Ray Brown 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. I would urge all scientists to refer to him as Timothy Ray Brown that's his name 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 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 transmit to their partner if they're on drugs and their virus is undetectable 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 they have blueprints of how they want to do this. They're actually ramping up greatly to try and end the epidemics so right here in New York it has one of the most progressive plans to end an epidemic. South Africa is even discussing it. 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 are infected or who are at risk. People are still dying from AIDS you can see San Diego 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 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 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 on to a single page. Now we have these high hanging fruit this is my last slide. The challenge is now to find a vaccine to find a way to use these are 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 in 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 bug to cure. It's not because people aren't trying to do these things. It's that the low hanging fruit I believe have been picked. So I had kept this up on my wall for a long time. I wrote a book about the search for an AIDS vaccine. This is the day that the polio vaccine was announced effective and the first sentence is 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. So I hope the 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 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. Thank you very much. For the sake of time I think we take all the questions during the hour afterwards. So now I'd like to welcome Stefan Hildebrand who's a Swedish documentary film producer and an old friend who's also affiliated with my university Kavlinski Institute and he's been filming the AIDS epidemic since 1986 and I take it more than 700 hours of footage on the AIDS epidemic. You call it the phase of AIDS project and you're going to talk about it here. I should know this. I'm a documentary filmmaker from Sweden and you know our dream as a documentary filmmaker is to have this one time life assignment not just to do a documentary film and release it and discuss it but also to be involved in something long term. That's like a dream. One February day, very cold winter in Stockholm, I got a phone call from a person that I have heard of from the TV but I never met. His name was Hans Vicksell and he was the former president of the Carolinska Institute and the Carolinska is also the leading Swedish medical university who is also awarding the Nobel Prize in Medicine. So when a guy like that calls and asks for a meeting, you go. If you're a young filmmaker. So I went to the Carolinska with the bus. I lived just about 20 minutes bus ride from my home and I saw this guy. I made also a little research on him before. He was and still is an international AIDS researcher. And also like very close to the activists. So he had been very important in the first years of fighting HIV-AIDS in Sweden in the activist side but he was also involved in the international effort in the AIDS research for treatment and for a vaccine. So I went to his office and sat down and he said I have three teenage kids. They have watched your movies because I have done several movies about young people and social problems in Sweden like Sex, Drugs and Rock and Roll and so on. So they have watched that and he had asked me on breakfast I need a filmmaker who should, can you give me an idea? And then they mentioned my name and I went to him and he said you're a documentary filmmaker. I have a vision as a scientist. It's very important to capture the history. And the history happens now with HIV and AIDS, 1986 long before the treatment. This was when diagnosis of HIV was equal to a death sentence. And he said I want you if you like to take your camera with your cameraman and go out in the world capture the epidemic, talk to the scientists, talk to the activists, to the patients, to the public health persons, to the social workers, the teachers but all of these people who make up this wonderful alliance, the global AIDS alliance that started in the US with ACT UP that we saw in John's photos and I want you to do this for at least 30 years because this is a chance to capture an ongoing epidemic live on camera as it evolves. And he said go home and think of this and we can talk further. And you know in my brain it was just boom. I already made up my mind. I don't need to think three weeks. I like to do it. And I said mind you it's 30 years. Yes, I said. And then he provided through the Swedish National AIDS Commission and the Carolinska, the first two years of funding so I could go around. And the first major production I made was for the fourth International AIDS Conference in Stockholm in 1988 where many of you here participating in the Cold Spring meeting were there in Stockholm. And then in Stockholm Hans Vicksell connected me to the Canadian delegation from Canada that had the next International AIDS Meeting in Montreal. So he convinced them that I should do that film also. And then when I did the Canadian film I had already become a friend with Paul Wolbering in San Francisco who was chairman of the Six International AIDS Conference in San Francisco the next year and then he gave me the assignment and then this is the way the project has gone on. And you know from the beginning Hans and his team at the Carolinska said we are not so interested in the films you are doing. We are more interested in all the material that constitutes the film. All the unedited material because that is exactly you know if you do a film and you interview Gallo you have one and a half minute but in reality I have one hour. So these original material that's what we like to have and we like to do for the world in the future when there is a distribution system because this is before internet before digital video before YouTube this is 60 millimeter film very heavy very clumsy and it takes a lot of space. So he had this idea there will be a distribution system in the future and then we should show the world that for young students and for researchers they can go back and see the history as it evolved. The first trip I made was to Sydney Australia after I accepted this assignment and we made like a deal Hans and the Carolinska and I and then I came to Sydney which had a big AIDS epidemic at this time. It was second to San Francisco in the western world with six seven thousand gay people already infected when I came and they had a strong AIDS activist movement and many scientists already working. So I came to a hospital and filmed my first dying AIDS patient. I was not prepared I did not see I had not met anyone in Sweden this went so quick so I went away for the first filming trip through Australia and it was professor John Dwyer in Prince Henry Hospital in Sydney and he took me into the room with the cameraman and the sound engineer and this guy was a writer a young writer on the up going up he was a gay and he had total crystal clear in his mental mind and I was interviewing him and he knew that he would in a few days a week or so die but he explained the importance of fighting HIV AIDS and he wanted to give his contribution by this interview and then when we when we were finished with the interview and we were packing up our equipment he started to sleep and we were very shocked all three of us the young cameraman and me so we were you know going sneaking out of the room and Dr. Dwyer stopped so I said where are you going well we are finished with the interview did you say goodbye no no he started to sleep we can't wake him we can't wake him up so you have to sit down take his hand and you know he had carposes that come all over his body and then I was forced to confront my own fear and then we went into the room and he woke him up he was still crystal clear after one or two minutes so I sat down I took his hand he was very sweaty and carposes had come all over so I was like scared and but I was hitting that the sound engineer and also the the cameraman and then we did that and we go away and then Dr. Dwyer would follow us to the elevator in the hospital and then he said you know I know exactly what you are thinking now you are going to wash your hands quickly but I'll tell you you don't wash your hands until you have lunch because this is not infecting you and if you are going to be a chronicler of the epidemic you have to fight you or your own fear and start now and he was stern like this and I was very moved and we went to the elevator and the sound engineer said please Stefan can we take an early lunch so that day and then we continued to film other interviews in Sydney coming to our hotel I get a phone call in there there is no mobile phones at this time I get a phone call from Dr. Dwyer to my hotel room eight o'clock in the evening we were just about to eat and then he said thank you for the interview I hope you learned something today the patient died just a few hours ago so the interview was his last contribution to the fight against HIV and AIDS thank you I said and then from that moment from that phone call all the fear disappeared in my soul and I felt very humble and that was a very important step for me in documenting HIV and AIDS to fight my own fear but then also it made me understand other people's fears you know that you meet in all this stigma that is still surrounding HIV and AIDS because you had it yourself one time far away back then I went to San Francisco to Paul Volberding it was also very a few days we were one of the few film team here really let us lose in the Ward 86 unique in the world for treating try to find new ways of treating and also taking care and comforting the patients with compassion it affected me very very much and then I had this Sydney experience behind me and then the first scientist I met was first we went to the Pasteur Institute meeting Montanier and Francois and the other filming there and then we went to Bob Gallo in his lab at the National Cancer Institute and also the activism I think has been very important as I see it you know I'm from Sweden we are a little Bernie Sanders all of us and so we think that the activism is driven by scientists, the political establishment, the media it has been very very important driving force the two waves of activism that John described the one from the US in the 80s with ACT UP and also ACT UP Paris very important and then also the second wave when the treatment came 1996 now I have worked for 30 years I started October 1986 with this meeting with and I just talked to Hans Vixel who has been here at Cold Spring before making this trip and he said I said at least 30 years so you have to go on and my dream is like John's I like to go on I'm old now but I like to go on until you can see the cure or vaccine or something like that and if it is not happening then I have to finish a young filmmaker to take over what I have done I like to finish by showing I did some editing from the archive and now all my 800 hours that I have done during the 30 years in 50 countries I started the same time as John now everything will be presented online in a digital format with very relevant metadata for students and anyone of interest it will be free of charge and it will be uploaded by the Karolinska in about one or two years they are just working on it and they own and curate all my 800 hours so that was the initial goal that Hans and I had from 1986 is now happening and I like to show you just some clips from the archive and how you will navigate in one or two years thank you A new disease known as Acquired Immune Deficiency Syndrome AIDS was first identified about 18 months ago and now has public health officials work. They found several cases where people who had been sex partners both had the conditions. Researchers are now studying blood and other samples from the victims trying to learn what is causing the disease Speaking to you as the head of the Food and Drug Administration of the United States but with the world contacts that you have would it be fair to say that the drug development effort to fight AIDS is the largest and most aggressive international effort that has occurred to find a treatment for a single disease In my experience Dr. Mann you are absolutely correct the world is taking this very seriously I think it is a serious issue and I think we all need to be very heavily involved in this war on AIDS Time has not been said that the people who are getting AIDS are the people of the city who could have lived if we gave them understanding if we gave them education if we gave them support and health I don't see very many cells right now possibly the virus has killed all of them but it may try to transmission into more cells or blood again or to another cell line Well we think the macrophage as my colleague Zaki was saying could be an important reservoir for the virus the macrophage doesn't die like the T-cell so easily even if it's triggered stimulated in some way the virus forms sometimes and still the macrophage lives we have the beginning of understanding of why You've been running for years till you get you got it made Only if you knew shooting drugs need to give you AIDS Come straight to the heart by the blood in your veins Mess up your life for a minute, help entertain Who among you had sex last night? Why are you smiling? How many women did you have in your life? No there's no problem about that you will have a lot of women There's nothing you have to consider Sex is a very important thing and it is just like breathing it is a normal function but in the West the idea of sex is presented in a very different manner and this is a focal point a focal issue when we consider the issue of AIDS I had to deliver the baby No doctors tried to They were afraid for you? They put me in one place like a room like a garbage like that and only nurses that assessed me My relatives The doctors were afraid of you? Yes And relatives they were afraid of you? Yes I got AIDS in 2001 Then I went to the start centre They tested me and I was positive The time I got AIDS I used to sleep with these truck drivers from Jobek to Zaire This is my mother they are looking after my mother But for me sometimes gate one As a man you need to have two, three, four, five It's normal and it's a need to survive But how do you manage? Do you use this stuff? These things are much better than what I showed you One of the great accomplishments of AIDS was that it led to the largest mobilisation of public opinion and civil society around a health issue in human history and probably around almost any issue AIDS became a social movement the fight against AIDS became a social movement and that movement is there is there to build on I'm an activist because I believe I believe in human rights I believe that people deserve an equal chance of life I believe just because you have HIV it doesn't necessarily make you any less different than that other person that is HIV negative I believe that whether you have TB or you don't have TB we both are equal and this is why I became an activist It seems evident but maybe it needs to be said that the documentation of the epidemic is extremely important Otherwise in the course of time people will forget and we shall have mythology and not the truth Now step by step the entire archive will be made accessible to the research community to students, not only medical students you know you have a behavioural students political science, religion, sociology and many many subjects that are interested in the issues related to HIV and AIDS AIDS is related as you said to inequality between the sexes it's related to social development it's related to security it has links with almost everything we do in life Mankhan has been suffering from many epidemics in the past this is the first time when a new disease was coming up you had an information potential a system, technology and you could document it and I found that most people didn't understand this and I believe you are unique in this regard and I feel this is the obligation for Mankhan it sounds big but it is big This panel at 315 we will hear from Vicki and then have questions and that will leave us 45 minutes to hear from the organisers about their thoughts about the meetings and the history and future of HIV and AIDS I think that's probably the best division of our time so it's really a pleasure to introduce Vicki Hardin Dr. Vicki Hardin who has been previously the head of the office of NIH history and the Steppen Museum She has done historical studies on HIV and AIDS including the public debates surrounding this disease and she received her Ph.D. from Henry University so welcome Vicki Somebody has the microphone Oh, I'm sorry I'm so sorry Okay, well I'd like to it's alright I'd like to thank the organisers for inviting me but much more importantly I want to thank them for hosting this meeting I don't know when in the future we will have this many luminaries in AIDS research assembled under one roof and thinking about the next panel I personally want to encourage the organisers to get these proceedings published I think it will be extremely important For myself personally it has been a great pleasure to become reacquainted with and to meet in person for the first time what I think of as many of my footnotes It is also appropriate that I have been asked to be the final speaker as a historian because as we all know in the long run historians always have the last word so historians take a long view of events often surveying centuries rather than decades so to begin this talk let's compare the story of medicines role in three major historic pandemics when the black death ravaged Europe in the 14th century a plague doctor in his hazmat suit featuring herbs through which to breathe to avoid the presumed plague infested air could do little for victims people knew that the only hope for avoiding the plague was to flee to the countryside when pandemic influenza struck six centuries later in 1918 medicine did understand airborne transmission various theories argued for bacterial or viral causation but lacking the tools to identify the cause medicine could only offer symptom alleviation and public health warnings astoundingly in contrast when HIV aid struck medicine was able to identify its cause and develop diagnostic tools therapeutic interventions that within 15 years transform the disease into a controllable chronic condition so in my allotted time I want to reflect on how the history of HIV aids has already been told and how it will be retold in the future when none of us are still here to tell the story first I want to emphasize that there is no such thing as a single exhaustive history of AIDS the story of AIDS is like a colorful marbled cake one can cut through it in many different ways to tell specific parts of the story writers of history also have personal interests and biases that may lead them to emphasize or ignore particular aspects of the story just choosing which facts to include means leaving out others so the notion of some all encompassing definitively true history of the epidemic is unrealistic historians of the future will begin with the evidence that we leave behind as they attempt to synthesize and write their own histories I want to look briefly at the five types of histories I have listed here that have already been written and suggest what you can do to ensure that the parts of the AIDS story you think are important will be among the materials available to historians of the future media presentations about the epidemic overwhelmingly focus on the human suffering caused by HIV AIDS and the heroic stories of community activists in the face of prejudice they capture an important theme of the epidemic they emphasize how the conservative political climate of the 1980s delayed passage of legislation to help people with AIDS they address homophobia in society and they tell stories of how brave individuals struggle to help those with AIDS medical personnel however particularly public health officials, medical researchers and regulatory officials are often portrayed as slow to help or even obstructionist I was most recently stunned to see for example at the end of the movie Dallas Buyers Club a statement in the passive voice that quote something I'm paraphrasing but effective therapies were eventually developed as if this was just something to be expected and really wasn't very important there have been a number of books focusing on more narrow aspects of the epidemic Jim Consellus book was the first to analyze how the media portrayed the epidemic such as the problems it faced in talking about sexual transmission on television one particular example he cited was the 1985 ABC interview with Tony Fauci in which journalist George Strait got Fauci to speak the words anal sex so that Strait didn't have to say them himself science journalist did a yeoman service in translating highly technical details into understandable language for the non-scientist and my colleague John Cohen's history of the effort to produce an AIDS vaccine is one fine example of this historians expert on individual countries have scoured them for evidence about AIDS history as John Elifi did for the entire continent of Africa scientist authors who undertake to write for the public also contribute to a broader understanding of particular aspects of the story as Canadian Jacques Pepin did in his book on the origin of AIDS next I want to turn to personal memoirs here we see the memoirs written by Bob Gallo and Luc Montignier about the research on identifying the AIDS virus for others which tell us about the epidemic from different perspectives Randy Schultz's early very moving account Larry Kramer's caustic stories a vergazes narrative about AIDS in rural America and Peter Piot's account of the U.N. AIDS effort to confront the global epidemic via each individual author's point of view each book illuminates a particular one particular aspect of the story I have to stop though and note that all the authors of these books are male we are missing the female scientist point of view still at this time I must also mention the discredited writings about the epidemic because they exemplify a well-known historical occurrence that is that when medicine cannot provide preventatives or therapies that clearly halt the epidemic alternative theories and practices will appear and thrive in the story of HIV AIDS Peter Duesberg's challenged HIV as the cause had profound consequences and delaying the adoption of antiretroviral therapy especially in South Africa even after it was demonstrated effective the website virus myth.com continues to perpetuate the Duesberg theory online although its reach has been much diminished since combination therapy was introduced in 1996 a rigorously researched book by British journalist Edward Hooper reflects a different kind of discredited writing Hooper suggested in great detail how the pandemic originated and contaminated polio vaccine administered to Africans between 1957 and 1960 later examination of stored vaccine samples however demonstrated that they had not been contaminated thus demolishing his argument on the fringe of the debate we saw the conspiracy theorists the earliest of these circulated in 1983 and it suggested that the CIA had manufactured AIDS Alan Cantwell, a retired dermatologist believed that because no formal history no formal history, that needs to be done the National Cancer Institute's virus cancer program had been written and published the program must have been a secret government program that served as cover for the development of HIV since NCI has laboratories at Fort Detrick Cantwell argued that this was conclusive proof that HIV was being prepared as a biological agent biological warfare agent turning to scholarly historical overview studies of the pandemic the first account was by French physician historian Mirko Grameck in 1989 in his narrative, Professor Grameck emphasized the nationalistic rivalry between France and the United States in the race to discover the causative virus he argued his own theory of pathosinosis that diseases in the world seek equilibrium this theory postulated that perhaps it was the elimination of smallpox in 1980 that destabilized the disease equilibrium and allowed HIV to emerge writing from a postmodern view that disease per se does not exist what diseases are socially constructed was the book by sociologist Stephen Epstein, Impure Science it was published in 1992 at the time AZT toxicity was being assailed and before any effective therapy had been developed this book and others like it reflect the emphasis on postmodern analysis in academic medical history circles as physician historian Howard Markell noted however it's easy to say that disease is socially constructed until you happen to find yourself in bed with one and in my own view I think HIV AIDS dramatically put paid to the notion that infectious diseases were not real entities Jonathan Engels book The Epidemic takes a broader historical approach but is light on scientific history and stronger on policy and cultural events for my own book my goal was to explain how the intellectual models of molecular biology and immunology that were emerging in the late 70s and early 80s guided the biomedical community in understanding and addressing AIDS this brings me to one serious concern about how AIDS history has been and will be written I see a large gap between how scientists tell the story and how some humanists do some of you may recall that in 1959 C.P. Snow, the Cambridge physical chemist and novelist bemoaned what he saw as the two cultures science and the humanities because the gap between them was a hindrance to solving the world's problems sadly the split has continued and perhaps widened as each camp writes for its own audiences my examples here are the 2011 fine historical article by senior CDC officials but is published in emerging infectious diseases for clearly an audience of scientists and in contrast I offer a completely non-scientific quick look at a listing of one page of dissertation abstracts in the humanities and social sciences on the subject of HIV AIDS if you can read the titles you realize that none of these dissertations require a lot of detailed scientific knowledge they're aimed at an audience of their peers in the humanities and social sciences this is all fine but someone needs to bridge the gap and I believe that scientists have reached across the gap more successfully than humanists but both groups need to aim work at broader audiences so where does this leave us in thinking about sources for the future histories about HIV AIDS it hasn't happened yet but maybe someday there will be a Ken Burns type documentary about biomedical research on AIDS what evidence will be available for producing such a film or for the written histories that will certainly be produced since AIDS research spanned the paper digital divide I fear that much of the early email correspondence reflecting collaborations and projects has already been lost more successful have been efforts to collect oral histories of the epidemic in the late 1980s I began interviewing scientists at NIH when I realized that no one else was systematically documenting the NIH response to a new pandemic disease a colleague on the west coast historian Sally Hughes compiled a wonderful oral history resource on the epidemic in San Francisco similarly the activist organization ACTUP has been compiling oral histories from community activists and making them available on its website historians Gerald Oppenheimer and Ronald Bayer interviewed New York physicians for their book on AIDS doctors their original interviews are available for $30 on request at Columbia University but not publicly accessible and recently I am delighted to report the Centers for Disease Control and Prevention have launched an oral history project with their personnel who were on the ground in the early years of AIDS these represent just a few oral history collections what is yet missing are systematically collected oral histories from many other countries in the world archives and museums will also be the sources of information for future histories of AIDS and what is in them depends on who donates my colleague on this session Stephen Hildebrand has already shown you some of his work with the face of AIDS archive my other colleague John Cohen has himself donated the research materials for his book to the University of Michigan the names project archived panels of the AIDS quilt and can make them available for study and exhibits the collections of the Staten Museum in NIH to cite the example that I know best Hull's artifacts is varied as a bottle that contained original AZT tablets and a book of children's drawings about AIDS from the NCI pediatric AIDS ward as well as scientific instruments used in AIDS research and the National Library of Medicine Hull's a wonderful collection of AIDS education posters from around the world collected by Bill Helfand some of you may know he was a Merck executive until he retired to end I want to suggest what you should do to ensure that the history of HIV AIDS will have available evidence of how the biomedical community in our time address this pandemic future historians will not read every single one of your fine publications documenting the step-by-step accrual of knowledge about HIV they need guidance about how you thought about your work with whom you collaborated and what the realities were as well as the successes they will want to know about the process not just the triumphs to get at this you should sit for an oral history if you haven't done so already perhaps the most important task though onerous you will think for you is to organize your unpublished documents scientific notebooks, emails related to your research photos, your artifacts and donate them to an archive or museum and I hasten to add you don't have to do everything at once and it doesn't have to be perfectly organized that's what archivists do for you these archives and museums are sometimes thought of as dry dusty places that scientists occasionally like to make fun of that will preserve the evidence of your work long after all of us have departed this life if you're able and willing pull your story together into an article or personal memoir and get it published the bottom line here is that you should not think yes, yes I'll do this when I retire we're all working a lot longer these days until you retire until you are so physically or mentally diminished that you no longer have the stamina to do the job what does not get saved goes into history's black hole never to be written about again I encourage you to take action now so that the scientific story of HIV AIDS will be available to the future thank you I should clarify one thing what was reported on I wasn't telling you my opinions about things so much as showing you what the major stories were over time and Bob was concerned that I weighed in about the controversy between the French and American governments and the scientists and I wasn't I was simply telling you that was a major news story and it was and don't kill the messenger I think that we owe a lot of thanks to both the French and American teams for collaborating the way they did and that's my own historical opinion about what really happened but that's not necessarily how it was always reported heroes of mine in your own form of media and give you one reflection and then ask you to help solve this problem in the beginning of AIDS I used to feel like AIDS topics and health topics in general were not being treated as seriously by journalists as for example national defense things like this through an era afterwards that John referred to where there were lots of very good people who understood the whole story and when a breakthrough came through they could put it in perspective themselves now we're in a situation not only a declined diminished interest in AIDS but the newspaper itself is a ghost of its former self so we don't even have daily journalism you know for the Lori Garrett's and the Donald Drake's and all these other people to write too because there isn't any newspaper in most cities USA Today is our newspaper so what do we do when we want to I mean the kinds of talks you heard today are not easily interpreted and scientists always will have enthusiasm about the importance of their discovery you know cures around the corner and you know you have to really know quite a bit to put that in perspective and either to dismiss it or over promise so what do you suggest to all of us who would like to hype our own work but without eventually being criticized two weeks later for over hyping it John you want to talk to that first? It's complicated and it's very hard to promote your work and not hype it but one thing you can do when you are speaking to journalists is make sure they understand what other people are doing similar to your work so that it broadens beyond you simply tooting your own horn maybe even tell them some people who don't necessarily agree with your thinking and then you get more of a balance and you can remove the hype that way there is good age journalism happening still the Pulitzer Center started 10 years ago and it recently funded a project of many young journalists that I worked with around the world they put out a book that's free and you can look at it I think there is a lot of really good reporting still happening it's just not in that old form of newspaper and I still find a lot of reporters who open my eyes to things but it isn't what it once was that's for sure I could add one thing and that is I think you who are working in the science field should be a little more personal because you have very interesting personal stories also beside the professional stories that you make the personal story when you tell it can be a bridge between the scientific work and the public opinion at large something like that I will say one more thing I think you need both the personal and more easily understandable side but don't be afraid to archive your serious science if we look back how many people in the general public would have understood Robert Cook's science in the late 1880's 1890's not many everybody knows bacteriology if they go to high school these days the same thing is true with DNA DNA was brand new it was very complicated but people the DNA has become a metaphor in our general conversation I think in the future people will know more of this science and I can guarantee you that there are historians of science who just eat it up they love to sit in the archive and figure it all out and they will learn your science John clarified something for me that was important I don't want to waste a lot of time on it but I do want to emphasize really the problems came from the press conference and then the patents for the blood test none of which the scientists had any role in I was called back from Cremona, Italy from a tumor virus meeting because Secretary Heckler found evidence of our papers in press, in science and elsewhere and she felt she had no choice but to make an announcement but I had just told the people at the Pasteur Institute if these viruses are the same as what you described last year I think that's the problem I think is over in terms of etiology we've got a blood test that's scoring close to 100% we can grow the virus forever it's a lot of data so we'll make a joint announcement I come back, call back the mistake I made was entering that room and that caused problems but I would like to stress many times it's the easiest thing to say is that there was an argument over who was first all one has to do is go to the press conference I made it very clear it's in my archives by the way they told transcript yeah the transcript and I said to a reporter don't use the name I use use the name also from the Pasteur Institute maybe use double names until we get a common agreement and discuss what it really should be and I made it very clear that what was new I had to say something but it's new we have a lot of data and I'm saying what they couldn't say before this is the cause and we have a blood test for it because we can mass produce the virus and we're scoring about 100% as you saw in the paper Bob I think if you were to do an analysis of how many words have been written about the AIDS epidemic and were to stack up how many of those words were about that controversy it's probably the most covered topic within words and that was my real point I know John but you know the sensitivities here you know I know it remains sensitive but it was a heavily covered thing in the media I was saying I was satisfied I was I don't know what you call it but I was ordered that I couldn't talk to the press so you couldn't even defend yourself you just had okay here goes and you go back to your lab and you know in all fairness to you too the press was often inaccurate and often extremely biased on one side or another and you know a lot of the media looked back at it about the controversy simply isn't accurate and it's it's fictional to anyone who was there as you know in enclosing we sent a lot of reagents to the French group to do their work and the idea to look for anyone who hasn't talked to people who were principles and who has seen the movie and the band played on to speak to the principles about the difference between what's in the movie and what they think really happened I think it's an interesting contrast I understand that there are a lot of older people who in second relationships are HIV positive because they figured that if they get AIDS it won't show up before they get anyhow so they're having unprotected sex I will say the senior population is one of the most at-risk populations forgetting AIDS because they don't think they're at risk they when they were young and sexually active they worried about getting pregnant and once they passed 50 and didn't think they had to worry about getting pregnant they didn't think about STDs at all especially about AIDS and so they are at risk now your argument that they they don't worry about it because they may die first it may be there but I would worry about it if it were me and also because they know that HIV can be treated you take a pill every day if you get it it's not the end of the world so they're not so worried that is true for the younger group also there is a there was a film that I found very chilling I think it was called The Gift where young gay men wanted to be infected to be a part of the community because now it can be treated it's not a big deal well it is a big deal those drugs are very hard on your liver, your heart, your kidneys and getting that message out is another problem I have a very short question is there any effort on the part of journalists and historians to not necessarily make stories which are sensational but also make it interesting for readers I don't know if that's possible I think certainly what Stefan's doing there's nothing sensationalist about it, there's no spin whatsoever and I certainly struggle to not do things in a sensationalist way and the editors I work with certainly don't want to do that I think people misunderstand the media all the time there are really bad journalists there are a lot of competent journalists they're exceptional, it's no different than science it's no different than garbage people it's always the same and it's a bell curve and so yes there are some who blow things out of proportion they do tend to get more attention but they're not the main bulk of the journalists I know it's just not how it works and there are historians similarly biased but the good news is that in the long run when we are 200 years out they will not have the personal interests that people have today the personal biases and so they will review the evidence that's why you want to leave the evidence and make a more balanced judgment well please join me in thanking our panel for a most well-liked discussion thank you if we can have the four organizers please come down and sit here in these chairs we have exactly 39 minutes for this session 38 what Bruce says what I would like to do is maybe to have each of the organizers take a minute or two and talk about what the meeting has meant to you the history, the future just to summarize in your own words what this meeting has meant why don't we start please I started this meeting with the sentence that the past helps the future and I was actually very very happy to hear it again and again from those who made this happen fight against epidemics and this effort to what we already know 35 years against AIDS and against HIV I have a few slides just to show you that in the scientific world today for these 35 years with 35 400 it's not easy for me to do it here but 400 4000 articles published and I'm talking about scientific work I'm talking about scientists so it was really important I don't know how the green so when David Baltimore today this morning he gave a talk he said and this is his quote HIV is the best understood virus on the planet so what we thought here was the idea for this meeting for this topic came from our president Bruce Tillman so that it is incredible effort from scientists and maybe it will be absolutely incredible effort for us to bring those major contributors to the field to this place and we have succeeded and this is the all and we've heard 63 talks and discussions and we've led the world to hear the scientists so this is how it's happened we really wanted to bring and as Vicky said it was incredible but it's happened all major contributors scientists to this field were in this room for three and a half days so and I advise you all probably in couple weeks to come to our site and you can see on the top so all the talks will be available there do you like to say a few words you know just repeat what she said if we're going to talk about the meeting I've had I don't know how many people maybe a dozen that are participants that said it was the best meeting they've ever attended in their career and one or two commented there was never anything like it before and there will never be anything like it again I actually agree with all of that it's the best stage meeting ever in this unique meetings with more data but this was the most thoughtful conceptual and you get the feeling I guess for the individuals I really feel like I got to know people in the field I know John forever but I get to really know John for example you really get to know the person and the thinking and see the development you could get your hands on and on internet everybody can tete-a-tete speak to Bob because they can hear his talk or everybody else like all other 63 people yeah well I didn't know that but we would I think a book is important I don't know who had it was your idea of a book and maybe getting it into a journal we'd have to condense though for a journal for a book maybe not so much condense but yeah the meetings that we usually go to are very scientifically oriented you hear a little bit of scientific background and then what people are doing we came into this meeting with a somewhat different concept and one of the things that we encouraged the speakers to do was to weave the science of what they were doing along with their own personal story and I think quite frankly I think we were very successful with that and I just learned a lot from the different backgrounds and the way all these different people kind of approached these problems from different directions there were people that came into it because there were some people who came into it because they had relatives who had contracted and died of AIDS themselves from personal experience and then there were others who came into it more like me because they were challenged by the interest in the scientific problems and others because there were physicians and they really wanted they saw a real problem for treating patient care there was an extraordinary collection of getting these people together and then there were of course activist community as well the extraordinary combination of these I think is unique actually to my it certainly contrasts for example with the way cancer research has progressed over the years it's approached this now more but when I came into it in camps there were the clinicians and the scientists and they barely talked to one another I think it was you Paul that said that to me last Paul and I learned something from Bruce before he talks Bruce talked about funny things that happened to him and that he was bad going into science and I've used that when I talk to students let's say at a graduation or something because students love it to hear how many times you fell in your head and how many times you were but I thought I learned at this meeting so do adults I mean everybody was very happy to hear you falling all over the place but let me close with one other remark somebody also asked me it was Hildebrand where is Stefan right there in front of me you asked me on the interview the first question what's special about Cold Spring Harbor you know he caught me off guard and I was looking at the beauty around me and the buildings and I said you know maybe it's a modern cathedral compartmentalized cathedral we look at that way and I think why did we have such ease in attracting everybody well you think it's you only but it's the grounds here okay it's the grounds here the history here and Jim I think people know that this is Jim's home and I think that adds to the need to come the desire to come the environment in total was not just us good organizers but it was an easy place to get people to agree to let me just add one thing to that in addition Cold Spring Harbor has sponsored the most important science meeting in retroviruses for about 50 years now actually I've been to 44 of them over the years every single once it's 1975 and there's those Bamburians also yeah I think it was really fitting that the meeting was here because Cold Spring Harbor and Bamburia played such a central role since the beginning of the epidemic and bringing scientists together but I came into the field as a physician seeing patients and being confronted with a new disease we had no idea what was causing it all we knew is that people died really rapid deaths a lot of pain and suffering and what was interesting to me about the meeting was just tracing the history of this from the very beginning when everything was a black box to sort of categorizing and cataloging how HIV slowly revealed its secrets to us as clinicians and scientists and looking at the progress that's been made since the beginning of the epidemic it does seem on the one hand like we've been working on this for decades but that's a very short period of time given the enormity of the problem and you connect those dots and you can't come away but be really inspired by the notion that we are actually going to solve this problem when you see the progress that's been made thus far and so to me the meeting actually ended up being really inspiring and that's what I'll take away from it The first HIV infected patient was seen and the Cancer Institute admitted to the branch that I worked on and we rotated in order and a young hematology fellow from Hopkins was rotating at the branch and he had responsibility for this patient and what ensued was just the worst of all downhill courses it was six weeks of just one disaster after another and at the end of that six weeks there was kind of a strategic decision at the branch not to see any more of these patients they were just too hard to take care of in the clinical center and it's called a clinical center because it's not really a hospital patient number two went to Tony Fauci and I think back up on that and I think boy that was I'm sure glad that worked out because certainly Tony has the NIH and has led NID in the most persuasive way around HIV care but it was a moment in time when things could have you know could have been somewhat different I always wonder what if I had been one place back in the order what if I cared for that patient what would have happened I don't know yes there was a question here can you wait for the microphone I have some friends and the gay men friends know about pre-exposure prophylaxis but my straight girlfriends don't and neither did my microbiology teacher so I just want to know why it's not widely advertised or what people don't know about it well I'll take a stab at that PREP is pre-exposure prophylaxis and it is what it means essentially is that you take the pills that fight HIV ahead of time so that you don't become infected and it's recently been shown to be really spectacularly effective if people take it on a regular basis and it sort of underscores a point that was apparent in this meeting is that we do have the tools if we could apply all of them now to prevent infections much more effectively than what we're currently doing it's just delivering those things etc it's also an issue of education and there I think we have to make much better effort to educate the population Warner may actually want to talk about this because one of the cities that has been the most effective in rolling out PREP and preventing new infections is San Francisco so Warner do you want to say something about that I could say something or Paul could say well San Francisco has a program called getting to zero and that is exactly what they're trying to get zero new infections with HIV and they're making steady progress treatment as prevention is one of the getting making sure that everyone who's infected is on treatment suppress their viral load to diminish their ability to transmit but the curve really turned down when in fact PREP was introduced more broadly you have to know that even soon after PREP was approved it was not welcomed it was viewed with great skepticism but now the communities are really embracing it and it's really rolling out FDA approval CDC guidelines reimbursement for PREP so it's really moving and it is highly effective if you take the pill it's 95 plus percent so it's that I know I'm concerned for my friends because I feel that if that's another way that they can protect themselves at what is it 98.9% or something so again we need to be better about communicating all of the tools in the prevention toolbox hi PREP actually remains controversial in much of the community I think in AIDS community it's less controversial and almost all of the uptake has been in gay men where it's even less controversial it remains controversial in heterosexual populations and of course the efficacy trials were very very mixed in heterosexual populations when they were done the other thing is that there's a lot of social media, gonorrhea and things that are much more common in women so it's important to give holistic sex advice to people what I want to say though is that Patrick Sullivan who is on our faculty in Emory along with AIDS View is setting up something called a PREP locator which will give throughout the country in every county where people can get information it could be advertised because that's something that would be thousands of places where people can get it the other issue of course is paying for it and following the FDA and CDC guidelines which involve first of all HIV testing but then also clinical studies and toxicity studies and repeat follow up a lot of these things are barriers to the normal young people who are reluctant to sign up for Obamacare so I mean it's a tricky business but PREP locators should help anybody who wants information about it and there should be information to people on how to get it, when to get it how often to take it and what I'm waiting for is injectable PREP because I think the adherence compliance issue is a problem with everything I mean we have to remember that condoms are 100% efficacious and efficacy is always higher than effectiveness which is much higher than program impact we've got to get something a lot easier than daily pills that's just philosophy we're just saying what you mean by injectable PREP for the long duration yeah so this is basically a drug in a form that would be given as an injection every few months ideally even less frequently than that and would give adequate drug level so you wouldn't have to take pills every day and it has been a real challenge globally in terms of dealing with the HIV epidemic that adherence being able to take the pills reliably every day is key to success and that remains a really big challenge as anybody who's tried to take a two week course of antibiotics knows it's hard to remember to take pills every day I certainly wouldn't tell a young woman that she could take PREP and avoid condoms and she'd still use condoms and the other lesson is from the family planning history and family planning literature which we can learn from what are those technologies which really improved a woman's right and a woman's ability to have sex safely and one of those things is long acting contraceptives or so called larks which have saved many millions of women throughout the world to that point I'm not an expert in this but I have heard people from these at risk communities using the excuse for taking PREP that they could then slack off on other methods of prevention and that's a it's something you don't like to hear because PREP is you miss a couple of pills and it's no longer working and so that that kind of disinhibition I think is still a problematic issue that I think needs to be dealt with what has been discussed these last days has been where should you put the money for research vaccines or for PREP that we just discussed or for cure so what's your opinion about this my answer is yes yeah but if you have to choose it's probably Emilia you know I thought you were going to ask me something different but you said you were going to ask me what we could have done better but we forgot already between there and here I know what you're going to do if you answered that question that's so full of controversy and I don't think anybody really has an answer to that Emilia wasn't very optimistic about future for vaccine Robert Saban before he died wrote to science of vaccines and now that I understand what a retrovirus is a vaccine will be impossible yet we work on it and there is increments of progress I was going to talk about it but I saw that there would never be any time but we have something that's in phase one now it's based on I think rational concepts it's going really good in primates but I already know the antibodies don't last and I know that's true of all GP120 vaccines and I know that they should all fail unless we solve this problem so for me one of the things I want to do is while this goes slowly forward and we're now funded to do so try to understand why and correct it that the antibodies to GP120 don't last very long right now I think prep is important if Harrington were here he'd be screaming at us that's a lot of things that has to be done I think in high risk groups it's certainly something that has to be very strongly considered and for me I'm not as you know and I don't want to get debates with some colleagues about it I wrote what I thought in science this week as was shown by someone who thinks differently but our Australian queen but you know you could debate it and I like the idea of long term virus suppression if we had a pill you know every six months every four months or something like that and we had a reminder for it and that really worked I mean after all we live with bacteria we live with other viruses if this was a became a harmless virus that you took a pill three times a year for it gee I wouldn't complain as long as I know I'm not being hurt and going to die prematurely from something else the other approaches are highly experimental and in my view they're potentially have spin-offs we don't want side effects that we would rather not see and I believe those side effects will be seen in some of the trials or there's something missing that I don't understand because when you start playing around with activating T cells and it goes wider than the cell that you're after I think we know from monkeys we get in trouble so I don't know I mean that's the direction I would go and that's the answer to that so I certainly think all three I couldn't say stop this or stop that so we divide the pie whatever size the pie is and hopefully it's not one of those frisbees I used to get when I was a kid frisbee remember that? Is anybody old enough to remember frisbee pies aren't that big? Okay so could I say something else? I mean there you know this has some parallels to the polio epidemic I think and Barry Bloom a former Dean of the School of Public Health at Harvard made a comment to me once along the way that really stuck with me and that was that there was a lot of controversy about where to put funds during the polio epidemic should you make more iron lungs that you knew could save children's lives or should you put those funds towards a vaccine and obviously in the end the vaccine has has obviated the need for the for the iron lungs I think there's some parallels there that we have a lot of tools that we can do for prevention but we're really not getting at the root of the epidemic then through that we have this smoldering epidemic that can still flame up and I think we have to work towards vaccines and cure in parallel. Okay this has been a history meeting so and you were all here during the epidemic from its start in the hindsight is there anything that you would have done differently? Yes I would have done differently I think I learned something that the scientist has power and when you're the only you're in the only group that really was aware and knowledgeable in depth of the story and you really do have power and I did not realize that so there was a committee formed between leaders at HHS and I was on it and I lasted a week and I asked Jim Weingarten the NIH director why this wasn't going on he said it is but you're not on it anymore he said why what are they doing it's nothing he said but you know the other people couldn't spell retrovirus and I should have demanded you needed somebody there that's one I didn't do the second was get back to the press conference I mean I should have said no I'm not going I mean I would have been in trouble but how much trouble when you think about it it's like Howard Teman who came up many times in this meeting told me that he once came to NIH when I was going through that Dingle stuff that John Cohn spoke about who had been attacking David Baltimore and now it was my turn Howard called the press conference on the NIH campus to give me help and Howard was then told if he entered the NIH campus they would arrest him he would be arrested it was the day he had received the presidential medal so he told me after it was the one thing he really regretted in his career because he had the press conference in a small hotel room in a little hotel near NIH campus he said what could they have done to me and the answers they could have done nothing and the third is more medical and that's the hemophiliacs the government in the United States was very proud of how fast they moved the blood test from our lab to the world but we had the blood test in February 84 quite ready and they came out with it in January 1985 it's a year later so I was sitting with a family of hemophiliacs everyone was infected the father he had infected the mother the children were infected four and he was mad at French government and what happened and not using our blood test right you know for quite a while and so he was suing and all this stuff and then I said to him when did you get infected and he said oh July 84 there was nothing you could do then I thought about it nothing I could have done if we simply thought about it but factor eight was in concentrated packs how many hemophiliacs are there six more technicians maybe I could have if not the world certainly maybe we could have set up for the United States in Europe and we could have saved many many many more lives certainly hemophiliacs not all the blood transfusion people we couldn't do that we wouldn't have enough virus we wouldn't have enough hands if they had been sensitive enough well yes it was yeah I think that would not have been a problem ultimately so I know Robin made that point and bowed to it but I don't think that's the case at least we could have certainly tried so what did I not do I did not do anything thinking that these things are being handled by the bosses above me at many layers not one boss thought of this or if they thought of it they didn't certainly do anything about it so I think for me a lesson the number one lesson when I look back is that the scientist really does have power when you are in a position of unique knowledge like you have been and many people here might be in their country for a while and you don't have to just take because somebody is your administrative boss you can just say no I'm this is the way it has to be I know more than you know I didn't have the gumption to do that so that's what I regret John and Bruce personally well I guess I could have done better was get my own work into AIDS research sooner I had been working in sort of basic retro virology since I was a graduate student in the late 60's and so I had been working for many years on other retro viruses but not HIV and I followed the HIV story very closely as it evolved in the early 80's and even wrote a couple of essays on the topic during the 80's and early 90's I actually didn't do any start doing any research on AIDS really until the late 90's sort of in a direct way and then that was actually by accepting a part time job to start an AIDS research of what I believe to have been to be a very successful AIDS research organization as part of the National Cancer Institute I myself never actually turned my own laboratories research to HIV and AIDS for a very long time after the start of the epidemic maybe it would have helped a little bit more but I think I'm typical actually quite a few retro virologists who are quite slow to get into the quite slow to get into the business and I think that may have might have slowed down some progress all progress was remarkably fast compared to any other infectious disease that's ever come along Jonathan Mann used to say in the history of the onset of a mysterious disease 82 to 85, what happened? Yeah, but and could it have been quicker not just from 82 to 85 but ever since then and I think one of the problems that we had was that we made the HIV field very insular that was a plus in many ways because we had our own study sections we had our own methods for allocation of funds and what it did was it set the HIV virologists and HIV immunologists and HIV molecular biologists separate from the rest of the scientific community we had our own meetings we would see the same people and I think if I think about what I might have been able to do more of is to really search out people from other disciplines who weren't working on HIV and that what the problems were that we were facing because I think that there and I think the same thing stands today that there are a lot of solutions out there for problems that we're dealing with that we're just not accessing because science is built in such a siloed manner and because if you're not already in the HIV field you'll never get a grant to study HIV That's the question Going back to allocation of resources I was wondering if you could speak about what efforts are being done to confront AIDS globally and what you think could be done better What efforts are being made to confront AIDS globally and what could be done better I think that it's remarkable in many ways how far we've come in terms of delivering antiretroviral medications globally there are some 15 million people on therapy now when in 2001 at the just prior to the UN gas meeting that addressed the issue of global HIV and this issue of treatment there was a widespread belief that you couldn't treat people in resource scare settings so I think there's a tremendous amount being done the problem was highlighted by some of the talks here and that is that for everybody that's going on treatment two more people are getting infected and so we're not making great ground and all those people are going to have to be treated indefinitely a lot of that has to do with just health systems and building health systems and my hope is that through confronting HIV empowering local health systems to provide better care on a broader sense but we need technologies to directly address the particular problems in resource scare settings like point of care diagnostics and things like that that really can facilitate getting more medications to more people and at the same time we need to develop vaccines that don't just work here but will work globally and I think there's a real effort to keep that in perspective and that the vaccines that are being developed now are really focused on that but obviously that's where the brunt of the epidemic is Slim Karim presented data showing that the incidence right now in one of the highest burden areas in South Africa is about 10% per year of women infected so 16 year olds 10% of them are infected by the age of 17 20% are infected all the way up to about half of women being infected by the age of 25 so still really really huge problems Jim wanted to comment on this so clinicians and historians and journalists are taught or learn communication skills and scientists do not always have the opportunity nor the ambition to learn communication skills I'm wondering how being involved in the early years of the epidemic and doing this work and being part of the sometimes insular HIV community what are some lessons that you've learned about communicating with multiple audiences and what lessons or advice do you wish that do you give your people that you mentor that you wish someone had told you before 1981 well I think we as scientists generally do a poor job of communicating our enthusiasm and our perspectives and a poor job of communicating what it is we actually do I think we also sort of turn off the I mean I look at this also from a fundraising perspective trying to get people to understand that actually donating to science can have a transforming effect and I think most people don't really understand what the life of a scientist is that we operate from grant to grant until we get those grants we can't do the work it's really constraining so I think it's really important that we make that known and I think that that's a learnable skill that we don't really teach people and everybody's totally overworked anyway so it's hard to know how to find the time but I think it's a really important point and I think it's something that people really need to kind of think about how can you sort of in an elevator spiel talk about what it is you're working on and get people to really understand the excitement of it we need more science writers or science journalists and they need to be involved in more perhaps more meetings and get to know people etc I think that it's also very important to communicate to deliver what you do to others because the notion about science is that it's quite a boring person who always sits in the lab I had when I was a little girl because my mom always told me to go to the medical school don't even think about science but it's different now people don't know about scientists they know what it's produced but how it's done people don't know even this meeting scientists started from their lives it's like how did they become a scientist what did they do it's very important for public to understand and it will be more appreciation if we collect the stories like you know I think Bob and Bruce you've both been scientists, activists and I'd like to encourage everybody to use your rockstar status and your credibility as much as you can people like Tony are deeply hindered by being government employees and they can only do so much your article about AIDS vaccine in the Washington Post about AIDS in Africa when they hear that from Harvard professors or Maryland professors that really means something to people and I think that I'm really I'm quite worried about commitment to AIDS I'll just mention two things one is the big battle over the NIH budget the last couple years Tony defended it but many other people above Tony and below Tony and around Tony were in charge of it there's a big tendency to want to dismantle portions of the AIDS research budget in NIH we have to speak out about that because there's a lot of scientists who are speaking out for it I wrote three or four editorials in the Washington Post in the last five years so that needs to be done the second thing is don't be fooled by fake political commitments I'll take the Obama administration and our next president Hillary Clinton as an example the time when the end of AIDS was being advertised we had a situation where there was no increase in the PEPFAR budget and an actual decrease in overall amount of money for PEPFAR at a time we were advertising the end of AIDS which to me was a clear premature declaration of victory and moving on to the next priority we're going to be serious about this in the long run we have to be advocates as much as that and I want to just throw in my biggest regret I don't since I have a microphone and that is we inadequately dealt with the issues of substance abuse I feel very guilty about it because I was told that that wasn't my agency that was another agency but I had the bully pulpit and they didn't and I should have done more about it because it remains the single biggest problem with adherence, compliance and it is the very roots of the heterosexual minority in children's epidemic in the United States and it created a huge problem that we haven't recovered from and America still doesn't care about it I would address this just to all the scientists here my first journalism job was at the Voice of America writing for Special English which is the widest the biggest radio program in the world people use it to learn English and have for decades and we had a vocabulary list of 1200 words we spoke at two thirds the pace of regular English so it went something like this today four persons were injured when a hand bomb was thrown into a crowd now I'm not suggesting you speak at two thirds the pace or use 1200 words limit your vocabulary and slow down those are two very simple things to communicate so speaking as someone who's just starting my medical and graduate education I'd like to ask you as a group of panelists what advice would you have for people who are sort of entering into this world of HIV research and clinical care and what would you envision the world would look like for us 30 years from now reflecting back the way we're reflecting back now the panel collective 30 years from now 30 years from now 30 years from now Jim will answer that I think I would hope it will be gone but you know you'll be working on something else productively I'd like to ask you whether new short folk written you could say for the new administration just you know not ten pages not one page but enough to read it you could read it overnight and you would get the basic facts of it exactly what was discovered when what was the situation in Africa what was the situation in America and just make it clear that it should be written probably by a scientist which as a scientist put too much effort and you already written and China is nothing else to do you'll be completely responsible too I'd like to be able to read the book it's nice to know from you know 8th to 10th I'm finished I have a fast reader not too many one more question this person Jim hold the microphone closer hold it closer how much would it cost if we wanted to then we'll publish it I think it would be better but are we talking about it's a hundred thousand dollar effort it's a million dollar effort I think you could two hundred thousand dollars and you'd get some and can't you just you know John do not just say we want the book and you'll probably think it's the beginning of the book and how many people are there who could write are they in this room sounds like maybe we should get together a little group to talk about that maybe after the session I think you could write I second that my name is really good but I think I would hate to see this meeting and without the book what we need is a popular book read by the president of the united states this is clear obligation of John Cohen it's your obligation what are your questions about that 30 years from now I said I hope the disease is gone but if it's not gone it'll clearly be heavily clinical and complicated therapies I suppose there will still be people infected there will still be at least some transmission I think it's going to have to hopefully it will decline substantially but there's still going to have to be dealt with I would say go deep not wide but it allows you really to have a meaningful impact I think a lot of people sort of feel like there's so many different things to sample from they may try and get out to be doing ahead of them being actually trained to do one last question I just wanted to very quickly say I've been a health educator in schools and I started in New York City public schools with the sex drugs and AIDS curriculum ever since and being in this room with all researchers who I've followed over the years it is like the first time I met the talking heads you guys are legends and I thank you for all the effort you're putting in and thanks for all the advances and keeping us in the loop so thanks thank you very much