42-year HIV survivor tells CROI she has gone ‘from fear to courage’
Key takeaways:
- Rebecca Denison has lived with HIV for 42 years and has actively taken part in the evolution of understanding the disease.
- She calls clinicians to share survivors’ stories to provide hope and education.
SAN FRANCISCO — During the opening day of the Conference on Retroviruses and Opportunistic Infections, Rebecca Denison, a decades-long HIV survivor, addressed conference attendees and discussed her experiences of living with HIV.
The presentation, titled “40+ Years of HIV: What’s Changed, What Hasn’t, What Shouldn’t, What Must,” gave Denison the opportunity to discuss the evolution of HIV from her unique perspective as a person who has lived with HIV for over 40 years.
“When I was diagnosed — because I was very uninformed and I didn't know the difference between HIV and AIDS — I thought I had 6 months to live,” Denison told Healio.
As her journey and the science progressed, Denison said her experiences were wide-ranging — from being part of a clinical trial at the NIH with Anthony S. Fauci, MD, former director of the NIAID, during which she challenged ethical practices when he refused to “just cut her open” to get lymph nodes she hoped could be used to save her friend’s lives, to learning that she stood in a “privileged” position as part of the movement to support HIV survivors and educate others about the disease.
She also realized that despite her diagnosis, her life could be everything she wanted it to be.
“I was able to get pregnant and have twins, and my husband, who's been my partner for 40 years, is still HIV negative,” she said. “Fear to courage. That was my story arc with this presentation.”
We spoke with Denison further about what has changed with HIV over the last 40 years, as well as what she hopes the future of what HIV looks like and what she wants clinicians to know.
Healio: What has changed with HIV over the past 40 years?
Denison: When I was diagnosed, there was one drug — azidothymidine. That was the treatment choice when I was diagnosed. “You can do this or nothing.” Because of my T-cell count, though, it wasn't recommended for me. They actually used to wait for people's T-cells to drop because the drugs were so toxic, so we would wait as long as we could. Eventually the drugs got better and studies began to show that starting treatment immediately was better than waiting. So, that has changed.
Another thing that has changed is that in the early days when I became an AIDS activist and started an organization and was meeting people with HIV, I lost a friend a week. I can't even count all the people that I lost, but I'm sure it's over 300. I was only 28 years old when I got diagnosed. It became this thing where you’re watching people die and know you’re going to die — that's it.
Incredible science has been done ... and the science that was laid down for HIV has helped the survival of so many people.
Healio: What hasn't changed and doesn’t need to?
Denison: What hasn't changed is the HIV community being amazing. They are the best people. They really care about people and are loving and kind and nonjudgmental and hard working.
Healio: What needs to change?
Denison: Stigma. Stigma is deadly. Stigma kills people. It's the stigma toward people with HIV, but it's also stigma toward almost every population that's most vulnerable to HIV [that needs to change] .
In my talk, I mentioned the privilege that I have as a white, cisgender heterosexual woman. Because I have this privilege, I'm intent on standing up for populations and people who are not those things and who are being treated horribly for no good reason. The level of cruelty that we're seeing right now is really, really intense and full of disinformation.
We had misinformation back then, and we did have some disinformation because we had the HIV denialist movement — I have friends who got infected because of the HIV denialist movement and other friends who died because of the HIV denialist movement — but the level of disinformation that we have now, that’s a thing that needs to change.
Healio: With such effective HIV preventions, like PrEP, do we still need an HIV vaccine ?
Denison: I think the latest funding cuts show us that we really need a cure, and we need a vaccine because we need interventions that are not vulnerable to the whims of politicians.
That said, I'm part of a community of long-term survivors nobody ever expected to exist. Most of us have comorbidities and we take a lot of medications in addition to our HIV medications. I take five pills a day, only one of which is an HIV medication, so even if there were a cure or a vaccine, I would still have to take medication. There are other people, though, who if you could cure their HIV, or give a vaccine for HIV, for that would be great.
Healio: What else should people know about living with HIV?
Denison: I need to express my gratitude to the scientists because, if not for them, I would not be here. If not for them, there would not have been a test. If not for them, I wouldn't have known I had HIV. If not for them, I would not have had the research that showed that condoms used consistently would protect my husband. If not for them, I wouldn't have been able to be a mother. If not for them, I wouldn't be alive.
But the other piece of it is, I ask clinicians to make sure that they share stories like mine; to let their patients know, even if you have HIV, you can live a long and full life. Even if you have HIV, you can have children. Even if you have HIV, you can have a long-term relationship. I've been with my husband for 40 years, and he's still HIV negative.
Hearing other people's stories makes it feel like life is possible, and not just life, but a good life.
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