[LAGOS, SciDev.Net]—Everyone who wants a new HIV shot* should be given it, according to Yvette Raphael, who chaired the Global Community Advisory Group for the large-scale clinical trials of the long-acting HIV treatment* lenacapavir.
Drugmaker Gilead announced last summer that its twice-yearly injectable HIV treatment was 100 per cent effective in preventing infection in a trial of over 5,000 women and adolescent girls in South Africa and Uganda.
With over two decades of experience since her own HIV diagnosis, Raphael has dedicated her life to ensuring African women have a voice in HIV research and can access prevention methods that work within their social and cultural contexts.
She is one of three people this month awarded the 2025 Mani L. Bhaumik Breakthrough of the Year Award by the American Association for the Advancement of Science (AAAS) for their work on the drug.
What were some key advocacy points the group pushed for in the trials?
One of the things that we spoke about was the current exclusion of young women and girls, as well as pregnant women … in trials. We ourselves are parents. So, we play that role to ensure that parents do understand what having young people in the trial would mean.
If a trial happens without you, without your demographic, without your community, it means when the results are published or they come out positive or approved, they get approved without you.
It is unusual for pregnant women to be included in clinical trials. How did the group advocate for this?
What we advocated for was to say … why would we be left out of trials as women because we are pregnant. We got to this point to say, let the women decide for themselves.
We advocated against their automatic exclusion upon becoming pregnant.
In trials, participants receive special treatment, including regular tests like viral load and blood pressure monitoring, ensuring comprehensive care.
We proposed that when a woman in the trial became pregnant, she would be asked if she wanted to continue. They would be re-consented to continue their participation.
Many women chose to do so primarily because of the superior services they received as trial participants.
Being in the trial meant they were prioritised, with consistent follow-ups and adherence support. Their blood pressure and other vital signs were regularly checked — services that pregnant women might not typically receive for free through standard antenatal care.
What feedback have you received from communities about the drug?
For you to understand well how HIV prevention is important for a black woman and African women, you all need to understand the black bedroom, the African bedroom.
There’s no time for you to take PrEP [Pre-Exposure Prophylaxis, an HIV preventative tablet]. Your mother-in-law is just going to say, ‘what are you doing? You know, what are these pills? Are they going to make my son infertile?’
So for a woman to have a discrete method that she can decide on her own … twice a year only is a game changer.
What unique considerations have you raised for implementing the drug in African healthcare systems?
One of the unique thing that we are saying is … give lenacapavir to those who want it and who need it and who deserve it.
There is usually a cascade or a priority population flow. They say, we’ll give it first to key populations or we’ll give it first to sex workers or we’ll give it first to young girls.
And then that really divides the community. So what we are saying is, please ensure you give lenacapavir to everyone who wants it. Anyone who is asking for it in the clinic — not to a specific population.
How do you think this approach will affect future HIV prevention research in Africa?
The [Advisory Group] .. idea was something that we really started working on in 2015, 2016, when we did the ECHO trials [on the link between contraception and HIV] and we’ve just gotten better. Women were organised, women were part of the trials.
For the future of research in Africa, this moment where we are at, where we see research being under attack, we just need to continue fighting as women to have our seat at the table.
What led you to this work?
Twenty-five years ago I was diagnosed with HIV, just after a year after giving birth to my daughter. And [I] made a commitment — I call it the most stupid commitment — that I would never see a young person struggle. I said to the universe, my God, my ancestors, that … if you can save me to raise her [my daughter], I will never let any young person struggle who passes me.
This piece was produced by SciDev.Net’s Sub-Saharan Africa English desk.
* This article was amended on 16 May 2025 to correct the inaccurate naming of the long-acting HIV treatment lenacapavir as a vaccine.
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