by Doug Hamilton -
SGN Contributing Writer
How soon will it be before we have a cure for HIV/AIDS? It is the 31 year-old question hounding viral researcher Dr. Françoise Barré-Sinoussi, who isolated the HIV virus in France in 1983, and went on to win a Nobel Prize for that in 2008. Here in her capacity as global ambassador and President of the International AIDS Society (IAS) (since 2012), that question followed her once again on her first visit to Seattle, where she took center stage August 27 at a public forum hosted by Fred Hutchison Cancer Research Center. The small auditorium of around 200 seats could not contain the spillover audience. It was understandable that they would be willing to watch from a monitor in the next room, because she is a rock star as far as epidemiologists, virologists, and AIDS activists go.
'AIDS Hysteria' was the title of TIME magazine's July 4, 1983 cover story that came out shortly after Barré-Sinoussi published her findings on the AIDS virus. The article idealistically told readers that the U.S. medical establishment would find a cure in the near future. During the time that followed, five years was tossed about as a possibility. 'Then five years passed. And another five,' as Dr. Barré-Sinoussi says about that prediction. This helps explain why, once again tonight, Françoise will not offer any definite timeline for a cure.
But still, there must be hope, right? 'If you are a scientist, and you do not have hope anymore, you should quit,' she says in her charming French accent. And there is a lot of hopeful work going on in HIV research at Fred Hutchinson, which is why she is here, to help shepherd international collaboration for a cure. Except she won't call it a cure.
Fred Hutchinson is using cell gene therapy on the AIDS virus so it can't replicate and becomes undetectable in the bloodstream. Dr. Françoise Barré-Sinoussi is optimistic such advances may bring the virus into remission. But she does not see a 'silver bullet' coming any time soon. The most realistic goal may be a so-called 'functional cure' that eliminates the need to take daily pills. And she's not convinced the virus won't be there within a reservoir hidden in the human body. Which may seem close enough to a cure for you and me, but not for her.
Work is still underway for a vaccine, which would prevent infection for a lifetime, but Françoise is not holding her breath for that just yet. While not a cure, per se, Dr. Barré-Sinoussi's sees it to be entirely feasible that treatments and medications for HIV can be improved to extend the time between doses. A tantalizing prospect would be a monthly injection of PreP. This would free many of a one-pill-a-day regimen.
Still, the audience brings forth examples of patients who have seemingly been cured. Seattle's own Timothy Ray Brown, for instance, the so-called 'Berlin Patient' whose cell transplants via bone marrow transplant for acute leukemia seemingly wiped out his HIV. Dr. Françoise Barré-Sinoussi is not convinced that the virus might not be hiding somewhere in him. And, 'Not everyone can have bone marrow transplants,' she points out. Bone marrow donors that match are few and far between.
And what about the Mississippi Baby? July 2014 news reports told us the baby scientists thought was 'functionally cured' of HIV now has detectable levels of the virus in her blood. So Françoise is being found correct not to offer false hope for a quick cure. You have to remember, she is a scientist used to working with electron microscopes, and has lived with this epidemic from the inside out for over 30 years.
Françoise is elated that HIV infected people are living long full lives using currently available medicines, but fears the time's attitude toward sexually transmitted diseases have become 'too lax.' She considers using available medications such as PreP on a daily basis to prevent HIV infection as one tool for HIV prevention, but reminds us that condoms are still a good tool, and prevent other STDs as well.
Françoise tells the story of visiting San Francisco General emergency room in 1984 and talking to a man who was in the advanced stages of AIDS. 'Thank you,' he said. 'Not for me. For the others.' He died the next day. She also tells the story of befriending many in the Gay community at that time who were AIDS activists, and seeing them die within five years.
She became both a researcher and an advocate. 'I felt that at one point, because of what I realized in the early 80s, that as a human being, it was also part of my life to be an advocate for others that were affected by this disease I was working on as a scientist. I became involved with the first NGO involved with working on AIDS formed in France in 1984.
'I was involved immediately with them because they were starting an NGO, it was a Gay community, and they, of course, needed to have information. And they asked me if I would accept to come from time to time and give them some report on progress in science and so on. So we started to work together quite rapidly. It was probably through this close relationship with the Gay community in France, I started also to work with ACT UP.
'For me it was obvious that even though I was a scientist, trying like all scientists to do my best to make progress delivering tools for the people living with this disease, it was obvious at the time, it was not enough. We had to become activists,' she told the SGN.
'That is why I became President of the IAS. Because as a scientist, and as a member of the community, I always feel that it is not acceptable to deliver tools needed for HIV, and being told the tools are not very important to everyone. I mean, we have to become activists. Because why to spend so much money on research? Why to spend all the time for trying to give tools to the population, wherever they are in the world. And the tools that we have to offer are not available? I can not accept that, myself,' she explains.
Dr. Françoise Barré-Sinoussi felt a huge pressure to educate the community after she, with team member Luc Montagnier, discovered the HIV virus in 1983. 'First thing was certainly to convince others in the scientific community, convince also the decision makers that the virus we isolated was the cause of it. That was probably the main pressure. To try also to speak also with the hemophiliacs, giving conferences to try to say to the hemophiliacs in 1983 be careful, do not be treated by blood derivatives as much as you are, because you are taking a risk to be infected by the virus. And I remember that they were answering, 'You want to kill us.' And I was trying to explain to them that 'No, I would like to save your life.' And they did not understand at that time.'
After she published her findings, the scientific community was not convinced that the virus isolated was the right virus, perhaps it was a contamination of the blood sample. The decision makers were not entirely convinced because the scientific community was not convinced. 'Nobody wanted to believe it,' Françoise puts it bluntly.
Even before Barré-Sinoussi and Montagnier started their search to isolate and identify the virus, AIDS was attached to a stigma. 'The data from the epidemiologist were already telling us it's an infectious agent transmitted by blood, blood derivative, by sexual roots, and by mother-to-child. Because it was already in reports by the end of 1982 of people with AIDS among the hemophiliac, among the Gay population, among Haitians,' she tells us.
The term 'AIDS' wasn't used. It was call the 4H Disease - hemophiliacs, homosexual, hypodermic needle users, and Haitians. 'It was also called the Gay Syndrome,' she recalls. 'I remember when, I think it was a little later on, when the virus was also isolated in the United States after that in 1984. I think there was a scientific article saying 'The virus of homosexuality isolated by the French.' So it was unbelievable. 'The virus of homosexuality.'
One of the most surprising things to Françoise, as she watched this epidemic unfold over the last three decades, is the lack of tolerance by the public 'for people, for the Gay population, for the drug users - everywhere in the world ... It was something really I could not imagine before working on HIV. That people were not tolerant to the other's sexual behavior and that everybody is free to live their own life as they like. The lack of respect for human rights. That is something that is hard to believe, even today. In my country of France, last year, when they allowed Gay marriage, I was shocked to discover, that even in my country where we'd had the Revolution, where we'd had the identification of AIDS. I thought that when the President François Hollande signed the legislation that would allow the Gays to be married, it would be okay, it would be easy.'
Instead, as those who have followed the international news on same-sex marriage know, there was a backlash in France, with demonstrations against marriage equality in Paris in 2013. 'It was unbelievable! I was shocked! I said, 'My God!'
Dr. Barré-Sinoussi's appearance in Seattle was part of a three-day symposium organized by a consortium called the Collaboratories. It is supported by the NIH, as part of the 'Cure Agenda in the United States' to explore Fred Hutchinson's work on cell gene therapy. Françoise felt, even before becoming President of the IAS, that now was the time to accelerate research for an HIV cure; and that due the progress being made on an international level, it would be good to coordinate international research. 'So I think that is the reason why they invited me here,' she says modestly.
'And I was really interested myself to see what are they doing now. Is there progress in their research? Of course, it will take time. One of the approaches that I am personally interested in is what are we learning in time from success and failure. I like very much the fact that there are researchers who were not involved in HIV at all, that are working together with HIV experts. I think this is very good because it can bring new ideas. The fact that cancer researchers are working together with HIV researchers is a good approach.'
Share on Facebook
Share on Delicious
Share on StumbleUpon!