The many hands helping make HIV history: 4 people on a quest to end the disease
Music stars. World leaders. Activists. They all came together at the Global Citizen Festival to help tackle the world’s most pressing issues, including HIV. In the lead-up to the big event, we spoke to some inspiring people playing an active role in fighting the disease—and advocating for those living with it.
What do you think of when you hear “HIV”?
Not so long ago, most people thought of the virus as a death sentence. And for many years, it was. Finding any kind of treatment when HIV was first identified in the U.S. in 1981 was difficult because of how many variants of the virus exist. And for people who had HIV or AIDS at that time, it could be equally difficult to find comfort through human touch—for many, putting your hands on those suffering was unthinkable back then.
But researchers persisted, and today there are more people living and thriving with HIV than ever before, thanks to lifesaving treatments. Still, a terrifying fact remains: Each year, an estimated 1.5 million people are newly diagnosed with HIV, and a vaccine is still needed to prevent future HIV transmission and hopefully someday help end the disease.
On September 28, the annual Global Citizen Festival in New York City—headliners this year included Queen, Pharrell Williams and Alicia Keys—featured both music and social action, including an exciting announcement from Johnson & Johnson about the company’s investigational HIV vaccine, which combines pieces of a wide variety of HIV strains into one regimen in an effort to evoke a broad immune response.
Paul Stoffels, M.D., Vice Chairman of the Executive Committee and Chief Scientific Officer, Johnson & Johnson, shared that the company is now preparing to take the regimen into a new Phase 3 efficacy trial called Mosaico, which will evaluate whether the vaccine can actually prevent HIV transmission in 3,800 men who have sex with men and transgender individuals across three continents. This first-of-its-kind study aims to advance a global vaccine that could be used anywhere in the world.
Just as the mosaic-based vaccine was designed to bring many strains of the disease together to form a powerful defense, there are many amazing people involved in the mission to #makeHIVhistory—everyone from dedicated researchers to patient advocates, like these truly inspirational men and women.
“I believe a vaccine will be our best shot at defeating this disease.”
Maria Grazia Pau, Senior Director, Compound Development Team Leader for HIV vaccine programs, Janssen Pharmaceutical Companies of Johnson & Johnson
“Challenging” is a good word to describe what it’s like to develop a vaccine for a virus with so many variants that it continues to evolve and evade attempts to trigger an immune response. But Maria Grazia Pau, who’s been involved in Janssen’s HIV vaccine research since the beginning in 2004, has always been up for that challenge.
“HIV, in particular, is prone to mutate very frequently,” says Pau, who heads up a team of clinical scientists, process engineers, immunologists and more. “This makes it incredibly difficult to find a vaccine that has the potential to prevent the spread of HIV and AIDS globally.”
Yet she and her colleagues didn’t give up the fight. The result of their hard work over the past 15 years: a mosaic-based vaccine regimen. “Just as many small tiles come together to make a beautiful piece of art in a mosaic, this vaccine combines all of these tiny variants of HIV genes to create our best shot at a defense against this disease,” Pau explains.
Just as many small tiles come together to make a beautiful piece of art in a mosaic, this vaccine combines all of these tiny variants of HIV genes to create our best shot at a defense against this disease.
There have been setbacks along the way in this field of research, of course, as well as gratifying moments—like the time the Janssen vaccine team in Europe and the U.S. team were all on the phone, listening to the data readout from the first global study of the investigational vaccine.
“It was the first time we looked at the immune responses of people from several countries, and the data matched what we’d learned in the pre-clinical studies,” she says. “We erupted into such an outburst of pure happiness that we had to put the phone on mute.”
Now, as Janssen and its partners are preparing to enroll participants in a new trial called Mosaico—a Phase 3 efficacy study of Janssen’s HIV vaccine that’s aiming to recruit 3,800 men who have sex with men and transgender people in the United States, Latin America and Europe—she can’t help but hope the results will be similarly thrilling.
“It’s been a long journey getting here,” she says, “and so many people have come together to make this happen—from the researchers and scientists to the support we’ve received from our partners. It really is a joint effort.”
“I’m proof you can thrive with HIV—and that advocacy can save lives.”
Jahlove Serrano, an HIV advocate who’s part of Janssen’s Positively Fearless campaign
Jahlove Serrano had sex for the first time just a few days before he turned 16. He didn’t use a condom, even though he knew about sexually transmitted infections (STIs) and HIV.
“But I thought, like pregnancy, these things only happened when you were having sex with a woman,” he says. “My high school sex ed curriculum was hetero-based and not tailored to my needs as a young, black gay man. When it came to sex with another man, I was clueless.”
I call myself the ‘Queen of Vaccine.’ A lot of people don’t even know there is an HIV vaccine in the works, so I’m committed to educating people. And I’m very optimistic for a future where we get rid of HIV and AIDS.
After their encounter, Serrano heard rumors that the man he’d had unprotected sex with was HIV-positive. He knew what this could mean, but wanted to wait until he was 18 and an adult to get tested, so the clinic doctors wouldn’t call his mom. He finally did get tested, and when the doctor started talking to him with his test results in her hands, it was as if he was watching it all play out on a movie screen in slow motion.
“When I heard the words—Mr. Serrano, you are HIV-positive—my world shattered,” he recalls. “I was like: What am I going to do? How long am I going to live? Will anyone ever love me?”
When Serrano was around 20, he began working as a peer educator, teaching kids about safe sex and STIs—the exact kind of sex education he needed as a young gay man. Today, as a 33-year-old who’s thriving with this disease 19 years after his diagnosis, the HIV advocate feels compelled to help in whatever ways he can.
That includes mentoring young men with HIV and educating people on how to thrive while living with the disease through Janssen’s Positively Fearless campaign. He also talks to young people in schools around the country, and has helped enroll individuals in HIV vaccine trials.
“I call myself the ‘Queen of Vaccine,’” he says. “A lot of people don’t even know there is an HIV vaccine in the works, so I’m committed to educating people. And I’m very optimistic for a future where we get rid of HIV and AIDS.”
“I could never have imagined we would come this far.”
Susan Buchbinder, M.D., HIV Vaccine Trials Network protocol chair for Mosaico and Principal Investigator for the clinical trial site Bridge HIV in San Francisco
When Susan Buchbinder entered medical school in 1980, she thought she was going to become a primary care doctor. Then, everything changed.
“I’ll never forget one of my professors saying, ‘We’re seeing strange cancers in gay men and we don’t understand them,’” Buchbinder recalls.
It was 1981, and as part of her medical school training, she quickly found herself taking care of people who were dying in San Francisco. “We were doing what we could, which wasn’t much,” she remembers. “These patients were mostly men, all of whom could’ve been my older brothers. And there were a myriad of social issues, in addition to the medical ones, we were grappling with—so much stigma and fear on the part of both patients and providers.”
It was a very challenging time—but also an inspiring one that led Buchbinder to pursue a career researching HIV and AIDS, discovering how the diseases progress and ultimately, how an HIV vaccine might be developed.
If you told me in the early ‘80s that I’d be working on a vaccine one day to try to prevent HIV, I wouldn’t have believed you.
In 2009, Buchbinder learned about the results of an HIV vaccine trial that showed modest protection for the candidate vaccine being tested. While the results weren’t as good as scientists had hoped, “it was the first toehold in HIV vaccine research that showed we could actually achieve what we were all trying to do,” she says.
Buchbinder continued to focus on the creation of an HIV vaccine, working on a number of protocols conducted with the HIV Vaccine Trials Network (HVTN) and Janssen. In 2017, she became the co-chair of a groundbreaking trial in Africa called Imbokodo—an ongoing phase 2b proof-of-concept study evaluating the safety and efficacy of Janssen’s mosaic vaccine. And now she’s the HVTN protocol chair for the Mosaico trial.
“If you told me in the early ‘80s that I’d be working on a vaccine one day to try to prevent HIV, I wouldn’t have believed you,” she says. “I could never have imagined we would come this far. We had so few tools available then. Now, people diagnosed with HIV who get treated quickly can go on to live long lives. And soon, we may be able to prevent this devastating disease from happening at all.”
“I did what many wouldn’t—I removed my gloves and touched the patients.”
Alison Paolercio, a nurse on Ward 5B at San Francisco General Hospital
As a nurse in San Francisco in the early 1980s, Alison Paolercio had seen and heard about the effects healthcare workers’ fear and homophobia had on AIDS patients. She had seen deathly ill patients who had been left by scared staff to fend for themselves, and food trays that piled up outside their doors because hospital cleaning crews refused to enter. The devastation was overwhelming.
She knew that something had to be done, which is why she applied to work at San Francisco General Hospital’s Ward 5B—the first dedicated AIDS unit in the U.S. and the subject of the new film 5B, commissioned by Johnson & Johnson—which was preparing to open.
Paolercio was thrilled to take the position, but on her third day on the job, she hid in an empty room and started to sob. She knew the work would be challenging, but she didn’t imagine it was going to be as difficult as she initially found.
“It became very clear that I couldn’t do this work alone,” she says. “We had to work together.”
We quickly realized that AIDS was a disease of care, not cure, and we were on a mission to make sure every patient was treated with dignity and compassion.
So, she and her fellow nurses on Ward 5B did just that. As patients began developing diseases not commonly seen in people with healthy immune systems—conditions like cryptococcal meningitis and pneumocystis pneumonia, which doctors didn’t know how to diagnose at first, let alone treat—the nurses upped their game by literally stripping away barriers, like removing their gloves, and practicing a radical kind of compassion not usually seen in hospitals. Sometimes that even included holding patients in bed.
“We quickly realized that AIDS was a disease of care, not cure,” Paolercio says, “and we were on a mission to make sure every patient was treated with dignity and compassion.”
Paolercio and the other nurses on Ward 5B made it a point to address each of their patients as people—not as an illness or set of symptoms that had to be relieved. They bathed and held their patients and told them they were loved—when others, including family, wouldn’t. And Paolercio says doing all of this was more than part of the job description—it was their raison d’etre.
“We wanted to give our patients control over the life that was remaining for them,” she says. “Nobody deserves this disease or should be made to feel that they do.”
Paolercio, who shares more of her story as a nurse in 5B, says the exciting progress that has been made since AIDS was first discovered is enough to bring her to tears again now, this time for a very different reason.
“When I think about my time working on Ward 5B, compared to where we are now with this promising mosaic vaccine, I’m overwhelmed with joy,” she says. “We are so fortunate to see this kind of progress in our lifetime. It’s so important to ensure that stigma about the disease doesn’t interfere with education about prevention and treatment options, as well as the work that is bringing us so close to a breakthrough.”