6 questions with Françoise Barré-Sinoussi, the woman who discovered HIV

Dr. Françoise Barré-Sinoussi on the finding that changed her life, her quest to get male scientists to believe her, the patients who moved her and the possibility of a cure
Dr. Françoise Barré-Sinoussi
Dr. Françoise Barré-Sinoussi co-discovered HIV in 1983. Robert Hood / Fred Hutch News Service

Nobel laureate Dr. Françoise Barré-Sinoussi, the French virologist who has been a leader in HIV research since her 1983 co-discovery of the virus, spent two days at Fred Hutchinson Cancer Research Center this week as part of the Conference on Cell and Gene Therapy for HIV Cure. In addition to her research, Barré-Sinoussi, the director of the Regulation of Retroviral Infections Unit at the Institute Pasteur in Paris, is equally known for her advocacy for people with HIV.

She sat down with Hutch writer Mary Engel for a Q&A. Her remarks have been lightly edited for brevity.

Fred Hutch: When you discovered the retrovirus that turned out to be HIV, did you have any idea what it meant and how it was going to change your life and career? Did you have any idea how big this was?

Françoise Barré-Sinoussi:  I had the idea that it was an important discovery because I was convinced that it was a new virus, never identified before. I called one of my best friends in the United States, to share with someone. He said, “Oh, my God. If what you are telling me, Francoise, is true, I would take this virus and I would put it in the garbage immediately because you are going to be in a mess for the rest of your life!” He was right!

He was joking, but he made me realize how important was this discovery. Of course it took additional months to make the link between the virus and the disease itself. But there is something that I and others at that time did not realize -- none of us in 1983 had any idea of the magnitude of the epidemic, and none of us had any idea about the complexity of the interaction between the virus and the body. I remember saying, “Oh, this is very clear. We infect CD4 cells with this virus, and the cells are dying, so this is the explanation of the loss of CD4 cells.” We were very naïve. More than 30 years after, we still do not entirely understand why the CD4 cells are disappearing.

Fred Hutch: Are any other viruses this complex, that after 30 years, you still don’t understand?

Françoise Barré-Sinoussi: There are very complex viruses, but this one is particularly complex probably because it affects the cells of the immune defense, all the cells that are critical for immunity.

Fred Hutch: One way that this changed your life was how, as a PhD scientist, not a medical doctor, you hadn’t expected to work with patients. Yet after your discovery became known, people with HIV started coming to your lab at the Pasteur Institute. Yesterday you mentioned two men in particular. Could you tell that story?

Françoise Barré-Sinoussi:  It was probably in 1984 — in ’83 we had a few people coming, but they were all French. But in ’84, after the announcement in the United States [that the AIDS virus had been found] by [Health and Human Services Secretary] Margaret Heckler, then people started to come to us in Paris thinking that we may have a treatment or something to propose. Among them I remember two that came to Pasteur. They were really in terrible shape. They should have been in hospital. They were very depressed, ready to suicide.  And so I felt in a very difficult situation. I asked if they’d like me to call a doctor because I was not a doctor. And they said no. And so I said to myself, “You have to be careful about what you say because they can go out and suicide in the street.”  I said, “Look, I cannot feel what you feel because I’m not myself affected by this disease. But you have to realize that you are not alone. There are many others, unfortunately, affected by this disease. I myself am starting to work with NGOs, with communities. Maybe you should be involved with communities because you will find out new objectives. You will see that that it is useful for you to talk with others that are in the same situation as you.”

They left. I did not know what happened until 2008, after the announcement of the Nobel Prize. Among the thousands of mails that I received, I saw two. They were from these people that I met. They wrote me: “Maybe you don’t remember us, but you gave the advice to work for communities. We did. And we’re still alive. We had time to wait for the treatment. And we’re doing well.”

Fred Hutch: You said of all the mail you’d received, it meant more to you than any of the others.

Françoise Barré-Sinoussi: Yes. I said, “My God. They are alive.” And that was really wonderful.

Fred Hutch: Where do you find your passion to keep working toward stopping HIV? What gets you up in the morning and back to work each day?

Françoise Barré-Sinoussi: People living with HIV. I mean, it’s them. More generally, life is so wonderful. I think the best motivation that you have is to fight for life. Like everybody, I have some times in my life when I’m pessimistic. I wonder whether I should continue, like everyone, I guess. Then I go and have a trip to Africa or Southeast Asia and have a small meeting with people affected by HIV, and I forget my mood. I say, “OK, let’s go on. Let’s continue. This is real life. Don’t think about yourself.”

Fred Hutch: When you started out, were there many other women doing this kind of research? How have you seen that change?

Françoise Barré-Sinoussi: There were already women making science at that time, especially in the field of HIV, by the way. We were several women involved, in the early ‘80s and still today. Of course, I was young, but when I look back in the ’80s, the number of women who were professor, for example, at Institute Pasteur, probably maybe five maximum. So there were women, but they were not at the highest level.  Now fortunately it has changed. We are not far from 50 percent. The balance is much better now than it was 30 years ago. It was very hard then for a woman to be convincing. Both the fact that I was relatively young and the fact that I was a woman, it was hard for the male to believe that what I was saying was true. (Laughter.)

Fred Hutch: I’d say you showed them!

Françoise Barré-Sinoussi: But a few of them were convinced. I remember giving my first talk at Cold Spring Harbor in New York. Several people at the end of my talk came to me, including males, for example some people from the CDC, and asked, “Can you come to Atlanta and tell us a little bit more about your story?” So some people were convinced, even if I was young and female.

Fred Hutch: When you come to a conference like this, it seems like there’s a line that you have to walk between encouraging scientists to work towards a cure or remission and not overpromising to people who have HIV, not raising false hopes. How do you walk that line?

Françoise Barré-Sinoussi: For me, it’s very simple: Just try to say the truth. I mean, in science, you have to try. You have to try with a kind of rationale. I say to people living with HIV, “Look, we think that [at least a permanent remission] is feasible. It will not be for tomorrow because we have a lot of work to do, many approaches to try, which will take time.”

What I know is if people and scientists are working better together — like it is the case here, by the way, people coming from the field of transplantation and others to work together with HIV researchers — I’m convinced it is the way to go. [We have to] try to go faster. But faster does not mean that it will not be long because unfortunately there’s a lot to be done.

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Mary Engel is a former staff writer at Fred Hutchinson Cancer Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.

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