In the early, frantic confusion of the Aids crisis, as doctors and patients scrabbled for answers, desperate to grasp what was smothering the immune systems of the young and fit, there was, in 1983, a turning point, a pivot on which the rest of the pandemic would hinge: the discovery of HIV.
When Françoise Barré-Sinoussi – along with her colleague Luc Montagnier – found the virus that causes the disease, it proved monumental, a boulder thrown into a lake from which ripples still fan out today. It proved critical, too, in transforming our understanding of Aids as it bulldozed through country after country, bringing blindness and pneumonia and death.
But for the woman who made the discovery there was another turning point. It was a moment that would change her for good and cement forever Barré-Sinoussi’s commitment to fighting the disease.
In early 1984, the virologist was invited to give a talk at San Francisco’s General Hospital – in the city that was at the time the epicentre of of the Aids epidemic. News soon circulated on the wards of the now famous French scientist being in their midst. “The doctor there asked me whether I would see an [Aids] patient who was dying,” she says, as we sit in her bright, white office in the Pasteur Institute – the building in Paris where her discovery was made.
“He told me that the patient would like to see me. And I said ‘OK’. I went there and he was really ill, in terrible shape.” She swallows and folds her arms, as if hugging herself. “It will stay in my mind forever,” she says. “He had difficulty speaking but he said, ‘Thank you’.”
Her jaw moves back and forth, grinding her teeth to keep control. “I didn’t know what to say and the doctor saw me and said, ‘Ask him why?’ And I did. He said, ‘Not for me, for the others’.” Her eyes fill as she glances down. The patient died a few hours later.
“Since that day, I still have that [image] in my mind... He took my hand and I still feel his hand in my hand today.” She looks straight ahead, her empty hands cupped, palm-side up. This, it transpires, is far from the only untold tale in a life and career that traces more than 30 years of the pandemic, from the smart building surrounding us to the devastated villages of Cambodia and Cameroon. Her story begins with a phone call.
“The clinician [Willy Rozenbaum, an infectious-disease specialist] in France called the Pasteur Institute at the end of 1982 to ask whether we’d like to look for a retrovirus in this disease [Aids]. I’d never heard about it.”
Barré-Sinoussi and Montagnier had been working on animal retroviruses in the early 1980s. A retrovirus, unlike other viruses, contains the enzyme reverse transcriptase (RT) and Barré-Sinoussi’s PhD focused on RT activity. So, despite an ordinary Parisian upbringing (her father was a surveyor), and despite being thousands of miles from the US, the epicentre of the disease, she was ideally qualified and in the perfect place at the perfect time.
Rozenbaum gave Montagnier and his team a lymph-node sample from a French Aids patient. They sampled the culture every three to four days to screen for RT activity, and noticed an increase, then decrease in activity, which correlated with the death of the cells.
“At one point we thought we would lose the virus because it was disappearing at the same time that the [T] cells were dying,” she recalls.And so, on a January morning, as their discovery was slipping through their fingers, one member of the team dashed across the street to the blood bank. They used the lymphocytes from the blood and saved the virus. After adding the fresh lymphocytes to the culture, they saw that the cell death correlated again with the detection of RT activity. Finally, they had the answer: a retrovirus was indeed responsible, and they were the first to discover it. But how difficult was the process?
“There was no problem at all,” says Barré-Sinoussi, now 66. What? One of the great medical discoveries of the 20th century was easy? “It was very easy. We received the first sample at the start of January 1983 and, 15 days later, we had the first sign of the virus in the culture.”
On 20 May 1983, Barré-Sinoussi and Montagnier published their findings in the journal Science, naming the virus LAV – lymphadenopathy-associated virus. (It was renamed HIV – human immunodeficiency virus – in 1986). “But what I didn’t realise was the impact of the virus. I remember that I told my husband, who wasn’t very happy because I wasn’t very often at home, ‘Don’t worry, it’s just, you know, for one, two years maybe and then it will be over’.” She laughs darkly at the irony.
As the epidemic emerged, she worked “like crazy”. People with Aids would show up at the Pasteur Institute, among them the Hollywood star Rock Hudson, who died in 1985. “They had heard that the virus was discovered here and they wanted to speak with the scientists who understood it.” But there was nothing immediate that Barré-Sinoussi could do.
“Some of them I became friends [with] and some of them are not there any more. The list is very, very long...” She looks away. As the desperate search for treatment continued, Barré-Sinoussi was unable to remain detached. “I knew as a scientist that we will not have a treatment tomorrow because we know that science needs time to develop drugs. To see the patients dying and expecting so much from us, it was terrible... It has been so dramatic and painful.”
The burden of expectation wasn’t the only stress. An ugly legal battle ensued after Dr Bob Gallo, at Maryland’s Laboratory of Tumor Cell Biology, published research the following year claiming that he had discovered the virus causing Aids. It turned out to be the same one already identified by the French, but Gallo was granted the patent for the HIV test, which began trials in 1984.
“I tried to stay away from this,” says Barré-Sinoussi with a snort, suggesting that it proved impossible. It took a meeting of the French and American governments in 1987 to settle the matter and split the royalties from the test. But that did little to quell the personal attacks. “During that period, I would go to these [HIV] conferences and have people affected by the disease standing up and saying: ‘The only thing you’re interested in is fighting with your colleagues. You’re only interested in making money, you don’t care about us.’ That was the worst thing for me to hear. I was shocked.”
There was one development, however, capable of bringing excitement, even joy: the introduction in 1996 of effective treatment – antiretroviral therapy (ART), also called combination therapy. But for Barré-Sinoussi, the very opposite happened. “I rapidly developed depression,” she says, flatly. “Probably because of so much stress accumulated for years – to have seen people dying and feeling that we were not going fast enough and when the data appeared of the combination treatment, that people were living, they were safe... and the fact that we were relieved – we just fell down.”
For more than a year, she stopped going to HIV events and conferences. “When I reappeared, some of my colleagues said, ‘What happened?’ And I explained and they said, ‘You, too? Welcome to the club’.” Despite not being alone in her reaction, the manifestation of mental illness was alarming and bewildering.
“I said to my husband at the time, ‘I feel that I’m not my own personality any more. I look like a virus. My face is like HIV. I cannot bear to see posters about the virus in the street or read announcements for prevention information.’
“I had to go to the doctors. I didn’t give them my name, in order for them not to make the link between the virus and me.” She lets out a meek, perhaps embarrassed laugh, folding her arms again around her tailored, dogtooth jacket. The doctor put her on anti-depressants for a year.
Joy did come, though. In 2008, Barré-Sinoussi and Montagnier were awarded the Nobel Prize for Physiology or Medicine. She was in a meeting in Cambodia when a journalist phoned with the news. Calls flooded in from around the world. The French Ambassador quickly organised a cocktail reception at the French Embassy. “We were celebrating until very late at night.” It was a brief moment of merriment. Effective treatment might have been developed in 1996, but of today’s 34 million sufferers, only about a third receive it; and in the West there is another disease: apathy.
Barré-Sinoussi is concerned that young people are “too relaxed” about HIV because “the education campaigns are not sufficient... there is not enough information”. A 2013 survey in Scotland found that one in 10 pupils think that HIV can be transmitted through kissing.
“They [young people] feel today that it’s easy, there is a treatment. They have not heard about co-morbidities on long-term treatment.” Eight to 10 per cent of positive people develop cancer or cardiovascular disease. “They look at me and they’re like, ‘Nobody told us that’.” She looks incredulous, thrusting her hands up in anger – not at them but at us: the adults.
She supports legislation to ensure mandatory sex education in schools, but also “to make sure that the education is well done... if the teachers are not well informed, they will not give the best information to students”. Even once sex education is improved, manifold problems must be overcome.
“Criminalisation of drug addiction is playing a negative role in access to prevention, care and treatment,” she says. “This has been reported and published by several groups at an international level, so I cannot understand why decision-makers in some countries are not taking the responsibility to implement a policy of decriminalisation of drug addiction.” Prostitution should also be decriminalised because “banning is a repressive measure and repressive measures are not working”. Equally, she also opposes attempts to ban unsafe (“bareback”) sex in pornography,
In 2009, she took on the then Pope. After Benedict XVI said on a visit to Cameroon that HIV/Aids is a “tragedy that cannot be overcome through the distribution of condoms, which even aggravates the problem”, Barré-Sinoussi wrote him an open letter, challenging his assertions. “I thought it was my responsibility. I’ve been to Cameroon for years, and several countries in Africa, and I know what the impact of such a statement can be on the population.” Those working on the ground there, including nuns, told her that after his speech, the use of condoms was “not going back to zero but [was] reduced. This is not acceptable.” Pope Benedict didn’t reply to her letter.
Since 2008, when the first known case of an HIV patient being “cured” was reported – dubbed the “Berlin patient” – a growing wave of stories have cited research from around the world on what could lead to a cure. But scientists prefer the term “functional cure” to describe a scenario in which the sufferer no longer needs ART but whose body is not wholly free from HIV. So is a complete cure even possible?
“In France, we say impossible is not French,” she says, with a little laugh. “But it is very, very difficult because that means we would be able to eliminate even latently infected cells from all compartments in the body; not only the blood but also the lymph nodes, the gut and even the brain. This is a tremendous challenge. The virus is hidden in the cells so it cannot be seen by the anti-retrovirals, it cannot be seen by the immune system.”
So how likely is it that within, say, a decade, a functional cure will be available for all? “I don’t know. I’m not going to tell you dates, because I personally think we should not – we don’t know and we should be honest as scientists.”
Improvements in medication are now so great that comparisons are routinely made between HIV and type 1 diabetes – both manageable, chronic conditions. Which would Barré-Sinoussi prefer to have? “Difficult question. I guess type 1 diabetes. Maybe because of my ignorance of diabetes, but I have seen so many dramas with HIV that I would prefer to be affected by a disease I know less about – it’s also about the stigma and discrimination.”
Perhaps the most important question for those with access to medication is when to start treatment. The debate rages between the need to halt the progression of the virus and prevent further transmissions (which ART does by 96 per cent) versus reducing the long-term side-effects of medication. If Barré-Sinoussi were diagnosed as HIV-positive, when would she start?
“As early as possible,” she replies, in contrast to the guidelines in several countries including Britain and Australia. “No doubt. We have scientific evidence that if you are treated as early as possible, the mortality and morbidity is decreased more significantly than if you are treated later. It’s a question of risk and benefit. However, today that balance is [tipped in favour of] early treatment.”
As I get up to leave, I realise there’s one question I haven’t asked, perhaps the hardest. Can she begin to conceive of what she’s achieved?
“I don’t think I can,” she says, looking bewildered, stumped. “Through the eyes of others, but not myself, because for me, when I go to the resource-limited countries and still see people in a bad condition, treated too late, and still people are dying, I say, ‘My god, it’s not possible. We still have so much to do’.”
She gestures out through the window at a world letting its young perish from a treatable virus and at doctors who, like her, still remember the touch of their skeletal patients. Her eyes narrow again, blinkered, determined, and with this, Francoise Barré-Sinoussi’s life and work become clear – none of it was a choice; it was all as the dying San Franciscan patient suggested all those years ago: for the others.
This is an edited version of an article that first appeared on Mosaic, a new digital publication from the Wellcome Trust. It is reproduced under a Creative Commons licence.