A Conversation with Jeremiah Johnson, Executive Director of PrEP4All

Jeremiah Johnson

Lenacapavir was recently approved by the FDA as a form of injectable preexposure prophylaxis, given twice a year. This approval was based on data that showed a nearly 100% effectiveness rate, prompting some experts to herald it as the next best thing to an HIV vaccine.

While this development is “significant,” Jeremiah Johnson, executive director of PrEP4All, warns not to “throw the baby out with the bathwater,” citing cheaper generic alternatives available.

In this interview, Johnson explains why access to PrEP is essential, especially in underserved communities, and how the recent Medicaid cuts and defunding of federal HIV programs will impact individuals.

This interview has been edited for length and clarity.

MHE: Have pharmaceutical companies and the federal government prevented access to HIV medication?

Johnson: Communities are caught in a lot of difficult circumstances right now where there are a lot of powerful entities that aren't really holding access as a central tenet, and so that's where a lot of advocates are focused right now.

Amongst pharmaceutical companies, the price of their products makes it incredibly difficult to distribute them into the community. Companies will point to patient assistance programs as a way of getting around that, but the fact of the matter is that when you're trying to get something that's the price of a car out into the system, the system treats it like something that is as expensive as a car. It's harder to get, and ultimately, for communities that are marginalized, it means that there are a lot of hurdles for them to gain access to that.

This is compounded by the fact that we're seeing a lot of threats at the federal level right now. We've never seen the access programs that we would like to see for underinsured populations. We've been pressing for a national PrEP program since 2018 and saw some traction on that, but right now, we're starting to see a pivot to try to cut critical federal HIV prevention funding, which is a real shame given that we have so many great options right now.

We're also seeing some real threats for insured populations around PrEP access. RFK Jr. canceled a scheduled meeting of the US Preventive Services Task Force, which oversees guidelines for preventive services that say any insurers compliant with the ACA must provide services without cost sharing if they have an A or B rating. PrEP is one of those things.

MHE: How significant is the FDA approval of lenacapavir as a form of PrEP?

Johnson: It is significant, but I will say that given the hurdles, I’m hesitant to jump on the ‘this is the breakthrough’ bandwagon. At the end of the day, the best PrEP for somebody is going to be the one that they can access.

A once-every-six-month injection could create tremendous benefit. If we could scale it up quickly, we could see durable protection for a whole group of people and have an impact on epidemic rates.

We need to fight in every way we can to get it out to people. I just don't want people to throw the baby out with the bathwater when we have a daily oral generic that is less than $1 a day that may be more feasibly scaled, particularly for some of the communities that are going to fall into the cracks of the American healthcare system.

MHE: Do you anticipate any treatment challenges associated with lenacapavir?

Johnson: As we anticipated, Gilead has come down on the PrEP pricing. It's just $28,000 a year now, but it's still the most expensive PrEP product on the market.

I'm very curious if they are set up at that price point to avoid the downfall of Apretude, the other long-acting injectable product for PrEP that was approved in December 2021, priced at about $24,000 a year, but has only gotten to only about 2.5% of PrEP users in the United States.

Because this is a provider-administered drug, clinics need to procure it, but in this case, they procure it upfront. If it's a smaller clinic, it’s a risk for them to pay upfront and wait to get reimbursed for something so expensive. We haven't heard anything truly novel from Gilead about how they're going to get around that.

MHE: Ideally, what would a national PrEP program look like?

Johnson: We have been focusing since 2018 on a national PrEP program for underinsured populations. What we have wanted to do is pull together a coordinated, simultaneous program that addresses the major barriers to PrEP access that we hear about repeatedly from community members, one being the complexity of cost and coverage.

We’d call it a ‘PrEP pass,’ where people could intuitively and easily access PrEP, unlocking the door to not just the medication but also the associated labs and provider visits.

The second piece is we need greater network expansion right now. A lot of the models still focus on, ‘if you build it, they will come,’ but that's not true, especially when you're talking about a preventive drug.

We learned about this in COVID. You need to make it ridiculously easy for people to access. We would like to see a hub-and-spokes model, where you can take some of those centers of excellence for HIV and PrEP care that already exist in communities and link them through leveraging telehealth to other brick-and-mortar spots in people's communities to give people as many options as possible to access PrEP in their communities.

The final pillar would be just better campaigns that are by and for the communities that we're trying to access.

MHE: Is this possible to achieve given the recent HIV program defunding and Medicaid cuts?

Johnson: The national PrEP program was never fully funded, and we’ve not seen that funding request continue with the Trump administration. However, we were successful in getting the CDC Division of HIV Prevention to commit to five pilot sites: South Carolina, Oklahoma, Florida, Houston and Baltimore to test out the theory of access. As of right now, that's continuing. Notably, this was the first time that CDC funds were allowed to go directly toward paying for antiretrovirals of any kind.

The big challenge we're seeing right now is that the Trump administration and its budget request to Congress for FY 26 appropriations have all but eliminated the Division of HIV Prevention at the CDC. While they have maintained in their proposal some funding for the Ending the HIV Epidemic initiative, which was started by President Trump in 2019, it doesn't make sense to do that, because that’s like taking out the foundation and leaving the roof of the house. You're not going to be able to build any sort of an ‘ending the epidemic’ response if you don't have basic surveillance testing, not to mention all the essential PrEP services that you see there.

This builds on the tax bill that was just signed by President Trump. If we are seeing 16 or 17 million Americans losing health care coverage in the not-too-distant future, the majority of that coming from Medicaid recipients, that's going to be a concern for all Americans.

In terms of PrEP access, there's some pretty interesting data that's come out of AIDSVu, which is based in Georgia, where they've shown that Medicaid expansion has been associated with a 33% increase in the number of PrEP prescriptions in the state.