On the heels of the International Day of Women and Girls of African Descent and the 45th anniversary of the HIV/AIDS pandemic, the central question facing public health is no longer whether we have the scientific tools to respond to HIV. It is whether we are willing to invest in the people who have been building care support all along.

That question has guided much of my own research over the past decade and is one I explore in my forthcoming book , Ill Erotics: Black Jamaican Women and Self-Making in Times of HIV/AIDS (University of California Press) . The book examines how Black Jamaican women living with HIV transformed responses to the epidemic through political advocacy, community care, and grassroots organizing, offering lessons that extend far beyond a single disease. Black women throughout the Americas and across the African diaspora have built community-based care that sustained people and communities when governments failed to effectively respond.

One organization that embodies this legacy is EVE for Life in Jamaica. Co-founded in 2008 by Dr. Patricia Watson and Joy Crawford , the organization has transformed how women and girls living with and affected by HIV experience care by integrating peer mentorship , psychosocial support , sexual violence prevention , and advocacy into a holistic model rooted in dignity and community. EVE for Life’s work reminds us that public health has always depended as much on community mobilization as on medical innovation.

Here, Dr. Watson explains what community-rooted HIV/AIDS care looks like and the need for sustained investments in grassroots leaders and organizations that have always carried the work forward.

Jallicia: What first drew you to this work, and how has your own journey shaped your commitment to women and girls living with or affected by HIV?

Patricia: I came to this through journalism. I was at the Gleaner reporting on health and socio-economic issues, and in 1999 I literally discovered HIV, having never been taught a word about it in school or at university. A crash course from Dr. Yitades Gebre at the Ministry of Health led me to Jamaica AIDS Support, which was running a hospice at the time, and when I arrived an emaciated man came up to the veranda, smiled, and stretched out his hand, and I cringed. I took it briefly, did my interview, went back to the newsroom and spent thirty minutes washing my hands and face, because I felt dirty, as though I could catch HIV from him. That night he would not let me sleep, and by 2am I understood why, the face had become Daddy’s, in Mandeville Hospital with gangrene in his right foot, stink, scorned by nurses and patients alike while my siblings were the ones who cared for him. My cringe and their scorn were the same thing, and I swore that night that I would never let anyone be treated the way my father was treated. Everything since has come from that - the Dispelling the Myths series from 2001, the training work at Panos Caribbean, and in 2008 EVE for Life, when my own research showed me that adolescent girls and young women were the gap nobody was filling.

Jallicia: You co-founded EVE for Life at a time when many adolescent girls and young women were being left behind. What gap were you trying to address, and why was it so important to build a women-centered organization?

Patricia: Different groups affected by HIV have different needs, and the Jamaican response at the time was generalized, but focused on men who have sex with men. Our focus group discussions and experts we spoke to told us that young women did not understand why they had to take their medication, or even what was happening to them. They had HIV, but what did that mean, except I will die soon? They needed counseling for stress and depression and above all they wanted to see women like them, living with HIV, who could show them how to navigate stigma. On sexual health they knew almost nothing: they didn’t know how they got pregnant except that they had sex; safer sex knowledge, low; birth control information, low; preventing transmission of STIs, zero. We built EVE for Life on that evidence, we did not assume what girls needed, but on what they told us was missing.

Jallicia: EVE for Life's Mentor Moms Initiative has become a powerful model of peer-led support. What does this program teach us about community-based care, trust, and the leadership of women living with HIV?

Patricia: What it taught us is that trust is not given to an institution; it is given to a person. A 15-year-old may not tell a nurse, or a social worker at a clinic that her mother’s partner is the reason she is pregnant, but she will tell a woman who sits down beside her and says, when I was 14, this is what happened to me. We were told more than once that this was not rigorous enough, but it was the mentors who kept girls in treatment when the clinic could not, who found out about the abuse the intake form never caught, who took the call at nine at night when a girl was suicidal or ready to stop her medication. And the mentoring also helped the mentor too: a woman who has spent years being defined by HIV or violence stands in front of a group and becomes the person with the answers. That is what leadership actually looks like, not a seat on a committee where you share your story and are thanked and sent home, but women running the program, many of them are now working in the Ministry of Health here and in the health system in New York, doing this same work.

Jallicia: Forty-five years into the HIV/AIDS pandemic, many people assume that it is over. What do policymakers, funders, healthcare leaders, and philanthropic organizations still misunderstand about HIV, and what investments are most urgently needed today?

Patricia: The first misunderstanding people have is that treatment ended the crisis; it didn’t. It only changed who the crisis falls on, because once the medication works, HIV becomes a story about who can reach a clinic, who can swallow a pill without being seen, and who can disclose without being put out of the house, and we have never funded those problems the way we funded the biomedical response. The second is the assumption that upper-middle-income status means a country has this handled, when that classification has been used to withdraw the support that reaches the people our own systems serve worst, and national statistics can look perfectly reasonable while a 15-year-old girl in St. Elizabeth has no confidential way to get tested. Averages hide people. They always have. The third, and the one that scares me most, is the belief that community-led organisations are a soft cost: when budgets contract, the peer navigators go first, the transport stipends go first, the counseling goes first, and you can procure the medication perfectly and still lose her because nobody walked with her. What is needed is sustained, unrestricted, multi-year funding for organizations led by people living with HIV; mental health support built into HIV care rather than referred out to a system that does not exist; long-acting prevention priced so that our health system can actually buy it; and adolescent services that do not require a parent’s signature, because for some girls the person they need protection from is the person whose signature is required.

Jallicia: Throughout your work, you've connected HIV to sexual violence, reproductive justice, mental health, and social protection. Why has it been so important to resist treating HIV as a siloed public health issue?

Patricia: Nobody has ever walked through our door with only HIV. A girl is referred to us for treatment support, and by the third conversation you find out she is 14, the man is 40, he is her mother’s partner, she has not eaten since yesterday and she has nowhere to sleep tonight, and the health system says we handle the HIV, the police say she must come to the station to give a statement, child protection says it will look for a placement, and then she falls through the crack. I have watched girls default on their medication and be written up as non-adherent, as though the problem were the pill. When she stopped taking it, it was because taking it in that house meant somebody would find out, and if somebody found out she would be put out. That is a housing problem and a violence problem and a stigma problem, and we recorded it as a treatment failure because that was the only box on the form. You cannot ask a woman to prioritise a virus that might harm her in ten years over a man who might harm her tonight; she will always make the right choice, and it will look like non-compliance to us. Treating HIV on its own is not a smaller version of doing the work, it is doing the wrong work carefully, you can suppress the virus completely in a girl who is still being raped every week, and call that a success, and it is not one.

Jallicia: Looking ahead, what gives you hope for the next 45 years of the HIV/AIDS response?

Patricia: What gives me hope is that the girls are not waiting for us anymore, a young woman in a rural parish who would once have been a name on a list is now running a peer network and sitting in national consultations, saying out loud what the rest of us tiptoe around. The tools have shifted too: for most of my time in this work, prevention meant asking a woman to negotiate with a man who had no reason to negotiate, and long-acting injectables and implants mean a girl can now protect herself without anyone’s permission and without anyone knowing. For a woman in a violent relationship, that is the difference between being able to protect herself and not. But the future I want is simple: that a girl’s safety is not decided by whether she lives below Cross Roads or in deep rural St. Andrew. We are very good now at educating a girl about HIV; we are not good at what happens after she puts the phone down, whether there is food, whether there is anyone to talk to about what happened to her, whether anyone comes when she calls. Bodily autonomy is not something you can teach a girl into, it requires that the things around her, her income, her housing, her protection from violence, are steady enough for her choices to mean something.

For more on Black women’s HIV/AIDS leadership, see: Forty-Five Years Of HIV/AIDS And We’re Still Ignoring Black Women’s Leadership, Says New Book, Ill Erotics .