Staffan Hildebrand: [00:00:00] I'm a documentary filmmaker from Sweden. Our dream as 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 a dream. One February day, very cold winter in Stockholm, [00:00:30] I got a phone call from a person that I have heard of from the TV, but I never met. His name was Hans Wigzell, and he was the former president of the Karolinska Institute. The Karolinska is also the leading Swedish medical university, also awarding the Nobel Prize in medicine. When a guy like that calls and asks for a meeting, you go, if you are a young filmmaker.
I went to the Karolinska with a bus. I live just about 20 minutes [00:01:00] bus ride from my home. I saw this guy. I made also a little research on him before. He both and still is international AIDS researcher, he's an immunologist, and also very close to the activists. He'd 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 [00:01:30] for a treatment and for a vaccine.
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 & Rock & Roll and so on. They have watched that and he had asked them in a breakfast, "I need a filmmaker who should—Can you give me an idea?" Then they mentioned my name. [00:02:00] I went to him. He said, "You're a documentary filmmaker. I have a vision as a scientist. It's very important to capture the histories 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. He said, "I want you if you like, to take your [00:02:30] camera, 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 Jon [Cohen's] photos, "and I want you to do [00:03:00] this for at least 30 years because this is a chance," he said, "to capture an ongoing epidemic live on camera, as it evolves." He said, "Go home and think of this and we can talk further."
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." He said, "Mind you it's 30 years." "Yes," I said. [00:03:30] Then he provided through the Swedish National AIDS Commission and the Karolinska the first two years of funding so I could go around. The first major production I made was for the Fourth International AIDS Conference in Stockholm in 1988, for many of you here participating in the Cold Spring meeting were there in Stockholm.
Then in Stockholm, Hans Wigzell connected me to the Canadian delegation [00:04:00] from Canada that had the next international AIDS meeting in Montreal. He convinced them that I should do their film also. Then when I did the Canadian film, I had already become a friend with Paul Volberding in San Francisco who was Chairman of the Sixth International AIDS Conference in San Francisco the next year. Then he gave me the assignment—and then this is the way the project has gone on. [00:04:30] From the beginning Hans and his team at the Karolinska said, "We are not so interested in the films you are doing. We are more interested in all the material that constitute the film, all the unedited material because that is exactly—"
You know, if you're doing a film, and you interview [Bob] Gallo, you'll have one and a half minutes, but in reality, I have an hour. They said, "This original material, that's what we like to have and we liked to do for the world in the future, [00:05:00] 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. He had this idea, "There will be a distribution system in the future, and then we should show the world. For young students and for researchers, they can go back and see the history as it evolved."
The first trip I [00:05:30] made was to Sydney, Australia after I accepted this assignment. And we made a deal, Hans and the Karolinska and I. 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 6,000, 7,000 gay people already infected when I came. They had a [00:06:00] strong AIDS activist movement and many scientists already working. I came to a hospital and filmed my first dying AIDS patient. I was not prepared. I had not met anyone in Sweden. This went so quick. I went away for the first filming trip to Australia.
It was Professor John Dwyer (b. 1939) in Prince Henry Hospital in Sydney. He took me into the [00:06:30] room with the cameraman and the sound engineer. This guy was a young writer going up. He was gay. He had total crystal clear in his mental mind and I was interviewing him. He knew that he would in a few days or a week or so die, but he explained the importance of fighting HIV AIDS, and he wanted to give his contribution by this interview. [00:07:00]
Then when we were finished with the interview and we were packing up our equipment, he started to sleep. We were very shocked all three of us, the youngest sound man, the young cameraman and me. We were sneaking out of the room and Dr. Dwyer stops us and said, "Where are you going?" "Well, we have finished with the interview." "Did you say goodbye?" "No, no, he's started sleep. [00:07:30] We can't wake him up." He said, "You'll have to sit down, take his hand," and he had Kaposi's sarcoma all over his body. Then I was forced to confront my own fear. Then we went into the room, he woke him up, he was still crystal clear after one or two minutes. I sat down, I took his hand. He was very sweaty, and Kaposi's sarcoma all over. I was scared, but I was [00:08:00] sitting there with the sound engineer and also the cameraman and then we did that and we go away.
Then Professor Dwyer follow us to the elevator in the hospital. Then he said, "I know exactly what you're 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 [00:08:30] chronicler of the epidemic, you have to fight your own fear and start now." He was stern like this, and I was very moved. And we went to the elevator and the sound engineer said, "Please Staffan, can we take an early lunch?"
So that day—and then we continue 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 [00:09:00] phone call from Dr. Dwyer to my hotel room, eight o'clock in the evening. We were just about to eat. Then he said, "Thank you for the interview. I hope you learned something today. The patient died just a few hours ago. The interview was his last contribution to the fight against HIV and AIDS." "Thank you," I said.
Then from that moment, from that phone call, all the fear disappeared [00:09:30] in my soul. 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 others people's fears 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 a few days. [00:10:00] We were one of the few film team he really let us loose in the Ward 86, which was unique in the world for trying to find new ways of treating and also taking care and comforting the patients with compassion. It affected me very, very much. Then I had this Sydney experience behind me.
Then the first scientist I met was—First we went to the Pasteur Institute [00:10:30] meeting [Luc] Montagnier and Françoise [Barré-Sinoussi] and the other filming there, very interesting. Then we went to Bob Gallo in his lab at the National Cancer Institute. Also, the activists, I think, has been very important as I see it. I'm from Sweden, we are a little Bernie Sanders all of us. [laughter] We think that the [00:11:00] activist is driven the scientists, the political establishment, the media. It has been very, very important driving force. The two waves of activists that John described. The one from the US in the '80s with ACT UP and also ACT UP Paris, very important. Then also the second wave when the treatment came in 1996.
Now, I have worked for 30 years. I started October 1986 with this meeting [00:11:30] at the Karolinska. I have talked to Hans Wigzell who has been here at Cold Spring before making this trip. I said, "At least 30 years," so you have to go on. My dream is like Hans. I like to go on. I'm old now, but I like to go on until you can see the cure or a vaccine or something like that. If it is not happening, then I have to [00:12:00] teach 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 Hans. Now, everything will be presented online in a digital format with very relevant metadata for researchers, students, and anyone interested. It will be [00:12:30] free of charge. It will be uploaded by the Karolinska in about one or two years. They are just working on it.
They own and curate all my 800 hours. That was the initial goal that Hans and I had from 1986 is now happening. I like to show you some clips from the archive and how you will navigate in it in one or two years. Thank you. [00:13:00]
Reporter 1: A new disease known as Acquired Immune Deficiency Syndrome, AIDS, was first identified about 18 months ago, and now has public health officials worried.
Reporter 2: They've had several cases where people who had been sex partners, both had the condition.
Reporter 3: Researchers are now studying blood and other samples from the victims, trying to [00:13:30] learn what is causing the disease. So far, they have—
Jonathan Mann (1947–1998): 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?
Interviewee: In my experience, Dr. Mann, you're absolutely correct. The world is taking this very seriously. [00:14:00] I think it is a serious issue. I think we all need to be very heavily involved in this war on AIDS.
Activist: Time that the city woke up and said that the people who are getting AIDS are the people at the city who could have lived if we gave them understanding. If we gave them education. If we gave them support and health.
Researcher: I don't see very many cells right now. Possibly the virus has killed all of them, [00:14:30] but [unintelligible 00:14:31] given me to try a transmission to more cells or cold blood again or to another cell line and then [unintelligible 00:14:37]—
Bob Gallo: We think the macrophage as my colleague Zaki Salahuddin was saying could be an important reservoir for the virus. The macrophage doesn't die like T-cell easily, even if it's triggered, stimulated in some way. The virus form sometimes and still the macrophage lives. We have the beginning of understanding of why, but it's too complex [00:15:00] and not useful to go into here now.
Educator: Who among you had sex last night? [crosstalk] Why are you smiling? [00:15:30] How many women did you have in your night? [laughter] No, there's no problem about that. You will have a lot of women, but there's something you have to consider. Sex is a very important thing and it is just like breathing, it is a normal function. In the West, the idea of sex is presented in a very different manner. This is a focal point, a focal issue when we consider the issue of AIDS. [00:16:00]
Respondent: I had delivered the baby, no doctors try to—
Staffan: Touch you?
Respondent: touch me.
Staffan: They're afraid for you?
Respondent: They put me in one place room like garbage like that. Only nurse that assess me. My relatives.
Staffan: The doctors were [00:16:30] afraid of you?
Respondent: Yes. They're all [unintelligible 00:16:32].
Staffan: Relatives, they were afraid of you?
Maryanne Chichimba: I got AIDS in 2001. Then I went to start center. They tested me, I was positive. The time I got AIDS, I used to [00:17:00] sleep with these truck drivers from Joburg to Zaire.
Truck driver: There's my mother there looking after my madam. For me, sometimes you get one. As a man you need to have two, three, four, five. It's normal.
Participant: I hope you survive.
Truck driver: Yes, I need to survive.
Interviewer: How do you manage? Do you use this stuff?
Truck driver: These things. I've bought plenty of them. Let me show you. I've got some.
Dr. Julio Frenk: One of the great accomplishments of AIDS was that [00:17:30] it led to the largest mobilization of public opinion and civil society around a health issue in human history and probably around almost any issue. The fight against AIDS became a social movement. That movement is there to build on.
Mary-Jane Matsolo: I'm an activist because I believe in human rights. I believe that people deserve an equal chance of life. [00:18:00] 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. This is why I became an activist.
Bob Gallo: 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 [00:18:30] have mythology and not the truth.
Staffan: Now it's step-by-step, the entire archive will be made accessible to the research community, to students, not only medical students, but you have a behavior students, political science, religion, sociology, and many, many subjects that are interested in the issues related to HIV and AIDS.
Purnima Mane: AIDS is related as you said to inequality between the sexes. It's related to social development. It's [00:19:00] related to security. It has links with almost everything we do in life.
Hans Wigzell: Mankind has been suffering for many epidemics in the past. This is the first time actually when a new disease was coming up, you had an information, sort of potential, a system technology, and you could document it. I found that most people didn't understand this, and I believe you're unique in this regard. I feel this is a obligation for mankind. It sounds big, but it is big. [00:19:30]
[00:20:06] [END OF AUDIO]
- 2.1 Paul Volberding — The First Patients
- 2.4 Robert Gallo — Discoveries of Human Retrovirus, Their Linkage to Disease as Causative Agents & Preparation for the Future
- 2.5 Françoise Barré-Sinoussi — Discovery of HIV
- 9.1 Jon Cohen — Responding to AIDS: A Journalist's View
- 5th International AIDS Conference, Montreal, June 1989
- ACT UP (AIDS Coalition to Unleash Power)
- activism, civil rights, protests, and social movements
- blood — banks, donors, plasma, screening, transfusions, clotting factors (factor VIII), PBMCs
- Cold Spring Harbor Laboratory (CSHL)
- Dwyer, John M. (b. 1939)
- FDA (US Food and Drug Administration)
- funding and grants
- Kaposi's sarcoma (KS)
- Karolinska Institute
- Mann, Jonathan M. (1947–1998)
- Montagnier, Luc (b. 1932)
- National Cancer Institute (NCI)
- Pasteur Institute (Institut Pasteur)
- public health
- Salahuddin, Syed Zaki
- San Francisco
- Ward 86, SFGH
- Wigzell, Hans
- No labels