The professor who won a Nobel prize for her part in the discovery of HIV says it is now her duty to get researchers working together to treat and prevent the disease.
In 1981, the US Centres for Disease Control and Prevention published a report describing a seemingly rare illness that had infected five men in Los Angeles, killing two of them.
It was the first official report describing a horrific illness that caused severe fever, fatigue and weight loss, seemingly only among gay men, ultimately killing many of them.
As soon as the report was released, stories flooded in from other doctors who had seen similar symptoms in their patients. The disease did not yet have an official name – that came in July 1982, when the international community adopted the name Acquired Immunodeficiency Syndrome, or AIDS.
As reports of the illness continued to spread throughout the United States and worldwide, Professor Francoise Barre-Sinoussi was working as a retrovirologist at the Pasteur Institute in Paris – a not-for-profit organisation with a focus on infectious diseases. And it was there she was approached by scientists in the early 1980s, urging her to help them find what was causing the AIDS epidemic.
That she was in such a position – working at Pasteur and ready to take on a devastating disease – was a result of her own persistence. A thirst to understand biomedical sciences at a level beyond what she felt she could by studying medicine drove her to seek out laboratory internships while she was just a student.
Laboratories such as Pasteur were the domain of fully-trained researchers, but Barre-Sinoussi convinced senior laboratory heads to let her intern there in the late 1960s, in her spare time while she was still at medical school.
“Very rapidly while at university, as a young student at the time, I realised I was motivated by science, by biomedical science, without really knowing what that meant,” said Barre-Sinoussi, 67.
“So after two years at university I said to myself, ‘I can’t study at university without knowing what it means to be a researcher, to understand science’, and so I began looking for a lab that would accept me at the same time while I studied.
“It was very difficult. Research labs were not used to this kind of approach by a student.”
They were male-dominated, and not used to having young, working-class women like Barre-Sinoussi in their midst.
“I was odd,” she said.
She approached several labs, which refused her. But a Pasteur virologist, Professor Jean-Claude Chermann, accepted Barre-Sinoussi, and she went on to gain her PhD there in 1975.
She was the president of the International AIDS Society (IAS), the organisation that runs the AIDS 2014 conference, which recently took place in Melbourne. When that conference closed, Barre-Sinoussi stepped down as president.
In 2015, Barre-Sinoussi says she will also retire and close the laboratory she still has at Pasteur, where she and her mentor Luc Montagnier discovered HIV in 1983.
That highly significant discovery revealed an urgent need for diagnostic tests to aid in controlling the spread of the disease and allowed the development of treatments that now keep people with HIV alive.
The pair were awarded the Nobel Prize for Medicine in 2008 for the breakthrough.
By the time the AIDS epidemic was identified in 1981, Barre-Sinoussi had built her career on the study of retroviruses. Retroviruses have an enzyme, called reverse transcriptase (RT), that gives them a unique ability to become part of a host cell’s DNA, and then replicate. It was also in 1981 that the first retrovirus was recognised, called HTLV-1, responsible for infecting T-cells and causing types of the cancer, leukaemia.
T-cells, a type of white blood cell, are essential to protecting the immune system.
“A lot of studies at the time were trying to make a link between different families of viruses and the AIDS epidemic, but none of the viruses at the time was corresponding
to the right responsible agent for AIDS,” Barre-Sinoussi said.
“So in 1982 a group of French clinicians (led by Willy Rozenbaum, an infectious-disease specialist) came to us at Pasteur, as we were retrovirologists, and said to us, ‘Do you think a retrovirus, maybe HTLV, could also be the cause of AIDS?’
“As clinicians, we knew HTLV was a human retrovirus capable of infecting T-cells, so in these researchers minds they thought in patients with AIDS – because their T-cells were rapidly disappearing – that maybe AIDS was caused by HTLV-1.
“So immediately we told the researchers we didn’t believe in it, because HTLV was causing leukemia and the cells infected were proliferating and causing cancer. But we told them, ‘We can check’.”
Montagnier organised a research group and found a patient with the illness willing to take part in their study, a young gay man in the United States.
A biopsy of the patient’s lymph nodes arrived with Pasteur by early January 1983, and Barre-Sinoussi and Chermann measured the RT enzyme activity in the sample every few days.
By this time, two retroviruses had been discovered in humans, but Barre-Sinoussi detected neither of them in her sample. She and her team found evidence of a new retrovirus altogether, which was later named HIV. With a virus now identified, work could begin to combat it.
Barre-Sinoussi insists that the closure of her lab at the end of 2015, following her official retirement, will not make her feel sad.
“I learned a few weeks ago that senior scientist in my lab, Dr Michaela Muller-Trutwin, has applied for a new lab at Pasteur to continue the work we have been doing together, and she has been accepted.
“I’m totally relieved as I know she will take over the lab so everything we have been working towards will continue.
“She did her PhD in my lab, she trained with me, she worked with me for 20 years. The work is in good hands. I consider her my daughter somehow. So that’s very nice. I feel it’s an achievement – knowing that all of my staff will work in other labs, I know where they’re going. And that is why I feel relieved.”
Perhaps because of her own experiences of fighting to intern as a young woman, Barre-Sinoussi greatly believes in the empowerment of her staff. She is fast to admit what she does not know, and says there are many senior researchers better placed to investigate HIV than she, the scientist who discovered it.
“Do you think today I am ever a principal investigator on a project or research?” she said.
“No way! I have younger, senior, principal investigators in my lab. They are capable.”
She believes in collaboration between researchers and pushes strongly for it in developing countries, where HIV still has a stronghold. And while she may be retiring from the lab and stepping down as president of the IAS, she will remain president-elect for the next two years.
It is now her duty, she says, to get researchers from around the world working together to find better ways to treat and prevent HIV. With so much progress on that front already made, an AIDS-free generation is within grasp. But not without working together, she says.
“In resource limited settings it’s complicated because they’re used to very limited funding and have a tendency to keep any funding to themselves, they think collaborating means less money for them.
“So you have to demonstrate and show them it’s not the case, and I like that work, it’s interesting work, and it is what I will focus on now.
“We need experts - young experts. Senior people have too much other responsibility. So it’s difficult to convince them because it’s not their education, it’s not their culture, they think only one person can have this kind of responsibility - the highest level - but that’s a mistake. I think it is our responsibility and duty as senior people to prepare our staff and team to take over our positions.
“It’s part of our job.
“I will not name them, but in several countries the boss is the boss. If you say you want to make a project application, they need to nominate a principal investigator from their country, they immediately give you the name of the director of the national AIDS programme.
“And I say to them, ‘Look - I have nothing against the director of the national AIDS programme, but he or she is not the one to make this work.”
Barre-Sinoussi remains humble despite her contribution to medical science. She speaks softly, but with strong conviction. And this conviction becomes especially apparent when the topic turns to access to healthcare.
She is frustrated that despite antiretroviral drugs being available which significantly improve the health of people living with HIV and greatly reduce the risk of passing the virus on, not enough people in developing countries have access to those medicines.
The big message to come out of her last conference as president is that key populations disproportionately affected by HIV – gay people, drug users, sex workers, and the poor – are still being stigmatised, she said.
She becomes fierce.
“The data presented at this conference regarding the repressive legislation in different countries, the stigmatising and discriminating of the gay population, of drug users – we know the results of such policy, of such legislation.
“We know that it will lead to an increase in HIV infections, an increase in deaths, an increase in co-infections. If you are in a country where there is punitive criminalisation of populations who do not have access to health services – it is devastating.”
But she was pleased to see the strong rejection by the 12,000 people at the conference of such damaging and discriminatory policies.
“I can really feel the community here mobilise in the fight for HIV, but also for global health in general.
“And we know there is no reason to give up on a cure, or at least no reason to give up on treatment that can induce permanent remission.
“We have all of this science, all of this research into HIV being presented and the key information we are getting from these models is that ‘it is possible to stop AIDS. So go ahead’.” — Guardian News & Media