How PrEP4All has adapted to meet the moment

The PrEP4All team has spent the last several years fighting for HIV/AIDS prevention and treatment access while also combatting new threats like COVID-19 and monkeypox.

In 2018, activists founded what was known as the PrEP4All Collaboration in an effort to spearhead an advocacy campaign focused on increasing affordability and access to HIV/AIDS prevention and treatment.

To this day, PrEP4All still has the same overall goal — but between the COVID-19 pandemic and the sudden emergence of monkeypox outbreak over the summer, the group has spent recent years and months juggling multiple efforts to confront new threats affecting vulnerable populations, including people living with HIV.

On the COVID front, PrEP4All led a working group to support policies focusing on the public health and economic needs of New Yorkers, produced a report outlining how the US could build vaccine manufacturing infrastructure, and stepped up in other ways to assist people during the darkest days of the health crisis.

Then, as monkeypox grabbed hold over the summer, PrEP4All held demonstrations, outlined where to get monkeypox vaccine shots, published a report highlighting racial disparities in monkeypox treatment, and demanded more testing, vaccines and treatment. The group has frequently emphasized that vaccines are only truly effective when people across the globe — not just wealthier countries — have access to them.

“We have unique expertise in addressing new and emerging pandemics and outbreaks, particularly for vulnerable communities,” said Jeremiah Johnson, who serves as PrEP4All’s acting executive director and has spent years working in HIV/AIDS advocacy. “We had to sort of take up the mantle for other pathogens even though we weren’t initially envisioning monkeypox.”

That work, of course, is far from over: Even as monkeypox begins to fade from the national spotlight following a drop in cases, PrEP4All has continued encouraging people to get jabbed at a time when vaccination rates have been stagnant. PrEp4All is also putting out social media posts calling for people to participate in studies to help researchers learn more about monkeypox treatment.

The new challenges have not distracted PrEP4All’s more direct work on HIV/AIDS issues. The team is continuing to focus on its core goal of boosting access to PrEP.

“That has still been the guiding force for the organization, and this year I specifically have been focused on leading our work for the national PrEP program,” Johnson said.

Part of the undertaking involves advocating specifically for those without insurance coverage because those populations are continuing to “fall through the cracks,” Johnson said. To that end, PrEP4All is asking Congress to fund direct services such as labs and medication. Advocates are also pushing for wider access to provider networks and funding for “telePrEP” options.

“Since PrEP was approved by the FDA 10 years ago, there have been nearly 400,000 new HIV infections,” PrEP4All wrote in a Facebook post in October. “400,000 too many. We are overdue for a national program that will meet this urgency.”

So far, PrEP4All has convened a coalition of more than 100 organizations calling for a national PrEP program and recently ran an individual sign-on letter through Grindr, generating more than 5,000 signatures from all over the country in support of a national PrEP program.

The work is also representative of the bigger picture in PrEP4All’s quest to reduce barriers to care. The group is known for denouncing the power of patents to maintain high drug prices and advocating for generic versions of medications such as PrEP.

PrEP4All’s work has helped to make a difference in a short span of time. In 2019, PrEP4All published a report showing how taxpayers foot the bill for drug research, prompting outrage among activists. Months later, the federal government filed a major lawsuit against Gilead for patent infringement.

PrEP4All has even led educational campaigns — complete with downloadable fact sheets — to fight misinformation and teach the public that generic PrEP is safe.

How exactly the group charts out its future is determined during weekly calls with PrEP4All members. PrEP4All has five staffers — Emily Bass, Kenyon Farrow, Christian Antonio, Michael Chancley, and Johnson — along with board members Peter Staley, Moises Agosto-Rosario, Milton Rodríguez, Ronica Mukerjee, and Tim Horn, according to the organization’s website.

The team meetings involve brainstorming and incorporating unique, targeted expertise to areas affecting vulnerable populations. That kind of expertise is also useful during calls with government officials and others who wield influence over public policy and health issues. This year, for example, members worked with government leaders behind the scenes to prod them on issues of importance to the community in the monkeypox fight. PrEP4All worked to encourage the Biden administration to increase access to the Jynneos monkeypox vaccine, and during those exchanges members had some “difficult and tense conversations at times” to advance those goals by raising issues in a way that government officials “weren’t prepared to deal with,” Johnson said.

“For us, we want to keep vulnerable populations at the center of what we’re focused on and we want to keep that in the center of our conversation,” Johnson explained.

Among other projects, PrEP4All hosted a “PrEP in Black America” summit earlier this year to address racial disparities surrounding PrEP intake. As part of World AIDS Day, PrEP4All plans to highlight takeaways from that summit and outline a roadmap for the future.

PrEP4All is aspiring to secure enough funding to host more summits in the future — including ones focused on different key populations. At the moment, the group is planning for 2023 and is trying to raise $25,000 from the public (PrEP4All takes no corporate donations, Johnson said).