By Marie Rosenthal, MS
A long-term HIV survivor, Rebecca Denison said healthcare professionals should make sure that people living with HIV understand they can live normal lives that include meaningful work, having families and loving relationships. But such a life does not come without challenges.
One of the challenges, at least for her, is the fact that much of the world seems to forget that women also contract HIV, and they have seen infections since the beginning of the epidemic. According to the CDC, about 1 in 5 new HIV diagnoses in the United States in 2022 were among women.
Ms. Denison, the founder of Women Organized to Respond to Life-threatening Diseases (WORLD), was the Martin Delaney Presentation speaker at CROI 2025, held in San Francisco. She has been living with HIV for almost 40 years. Her diagnosis in June 1990 was almost an accident. She was tested to support a friend who was tested. Her friend tested negative, but Ms. Denison did not.
“My first horrified thought was that now I’d never be able to have a baby. The next was how did I get it, and whether my husband had it, too. Then how would I tell my parents?” Ms. Denison said. “And finally, [there was] the realization that I was going to die because back then in 1990, it was understood we were all going to die.”
She said the counselor advised her: “’Most people find it safer to not tell too many people.’ Other than telling my husband and my closest friends, my plan was to remain silent.”
However, the AIDS Coalition to Unleash Power was not silent, and she heard a chant during one of their demonstrations that made her realize she could not remain silent: “AIDS is a disaster. Women die faster.”
Someone handed her a flyer pointing out that men died on average 18 months after an AIDS diagnosis, but women died after only six months (Am J Public Health 1992;82[11]:1500-1555).
“I remember counting six months from the day of my HIV diagnosis from June 16th. Six months would be Dec. 16th, and I wondered how I could capture just two more weeks to get one last Christmas with my family,” she said.
She started to attend meetings for HIV activists, where she was often the only woman in the room. She was so uncomfortable at the first meeting that she got up to sneak out, “when a kind man named Hank Wilson stopped me at the door, laid a warm hand on my shoulder, and he said, ‘Thank you, Rebecca. Thank you for coming. We need you.’
“Those four words changed my life. I spent many months wondering, ‘Need me for what?’ I share this story because when I felt I had nothing to offer, these people saw something in me that I did not see in myself. It’s a power that we all have—to uplift, encourage, mentor and support current and future generations. It took me a while to figure out how I could contribute,” Ms. Denison said. She started connecting with other women who had HIV, and eventually she and her husband started WORLD, which started as a Bay Area newsletter specifically for HIV-positive women because “women with HIV and the people who loved them were so hungry for information and peer support that it quickly grew.” (At the time, opportunistic infections seen by women with HIV were not even included in the CDC definition for AIDS.)
She’d been losing a friend every week to AIDS, she said, and began joining clinical trials. “In 1994, I joined a study of long-term non-progressors at the NIH [National Institutes of Health],” she said. “I remember being so desperate to help the scientists find a cure, that when the surgeons could not palpate a lymph node that they were supposed to biopsy, I begged Dr. [Anthony] Fauci and a group of young scientists gathered around my bed to cut me open and dig around. He kindly informed me it wouldn’t be ethical to just cut me open and dig around,” she joked.
Around this time, she found out her viral load was undetectable. Her dream was to have a baby, but she was so afraid that she would pass HIV to her child that she did not believe she would ever achieve that dream. At every conference, she talked with researchers about the possibility, but most counseled against it until the results of the ACTG 076 study of zidovudine and pregnancy.
“My husband Daniel and I decided to start a family. We reached out to the Bay Area perinatal AIDS Center at San Francisco General, where I got state-of-the-art preconception counseling and prenatal care.”
She delivered twins—Sarah and Sophia, who are almost 30 years of age, and like her husband, are HIV-negative. Ms. Denison and her husband just celebrated their 40th anniversary.
“The HIV-positive people that you interact with need to know that they can have and deserve to have healthy, long, loving relationships and that their partners can remain HIV-negative and that they can have families. After my daughters’ birth, I traveled the world talking to women who desperately wanted a family,” she said.
The More Things Change, the More They Stay the Same
Many people living with HIV today have never known a time without the AIDS drug assistance program, the Ryan White Care Act or U.S. President’s Emergency Plan for AIDS Relief, but programs such as these are in jeopardy, and she is concerned they will no longer be funded. If the Affordable Care Act is dismantled, people, including Ms. Denison and her family, would lose insurance because, under the act, it is illegal to discriminate against those with preexisting conditions. Her bictegravir (Biktarvy, Gilead) alone without insurance costs $12,000 for a three-month supply.
And yet, she says she is fortunate.
“I’m humbled and honored to speak to you as one of the nearly 40 million people living with HIV, more than half of whom are women,” she said.
“I’m aware of the countless unearned privileges that I have as a white, heterosexual, cisgender, relatively able-bodied person born in the United States,” she said. “As a white woman, I could speak up about injustice without being called an angry Black woman or being accused of playing the race card. I’m free to unequivocally state that transgender and nonbinary people have always existed and always will. I say also that I’m honored because as a person without a job or official affiliation with any organization, I have the additional privilege of being able to speak my mind to say all the currently forbidden words, which CROI said I could say without fear that my organization or institution will be punished by an administration hell-bent on hurting people.
“Your work saved my life,” she told the audience. In addition, she said the work has translated into other fields.
“I also want to acknowledge how your work set the stage for the people who did not care about HIV to nonetheless benefit from HIV science when the COVID pandemic hit. Most Americans don’t know that while we waited four years for a test for HIV, they got one for SARS-CoV-2 in four weeks because of us, because of you. Or that while we are still waiting for a vaccine for HIV, they got a vaccine for SARS-CoV-2 in a year.
“The work our president now threatens to cut as waste and abuse is work that has saved millions of lives.”
‘Do Not Crumple’
She urged people not to lose hope. “Doctors never expected to treat long-term survivors,” she said, and today they struggle with many of the comorbidities of other older people, such as heart disease and diabetes, but healthcare providers need information about how to treat these issues in people with HIV.
“Millions of lives have been saved. Marginalized groups have organized and finally been heard, but the backlash has been vicious.
“We are 48 days into a new administration, and already the attacks on our most vulnerable people have shocked many of us with their rapidity and unnecessary cruelty. Our president has declared that only two genders exist. … Our president calls DEI illegal. How can diversity, equity and inclusion be illegal? … A vaccine-denialist, who claimed HIV was caused by the gay lifestyle and poppers is now in charge of the Department of Health and Human Services. Hey, RFK, I never did poppers.
“Now government workers and scientists and some of you and your colleagues are under attack. We know what it feels like to be attacked for who you are, and we stand with you.
“Do not crumple in despair. That is exactly what they want you to do. What is happening today is not normal regardless of our income education, connections or HIV status. My experience has taught me that everyone has something to contribute,” she said.
“Fear is a reaction. Courage is a decision. Don’t be afraid. Figure out what you can do and then do it because as someone once said to me, ‘We need you.’”
