New research: Out of thousands, only 42 people started long-acting injectable PrEP

When Alexa D’Angelo, PhD, MPH, a researcher with CUNY, started looking at the data from a recent study on PrEP access, she almost couldn’t believe the number of people taking long-acting injectable PrEP was so low. 

Out of more than 5,300 gay and bi men, trans people, and non-binary folks included in the study—all of who were identified as possibly at-risk for HIV—only 42 had started cabotegravir (a new long-acting form of PrEP at the time) a year after entering the study. This despite more than half–61%–who expressed interest in injectable PrEP at the outset. 

“Instead of having a whole paper to unpack, which is what I expected, uptake was so low that it became clear, “Oh. This is a brief report, there’s very little here, because this intervention isn’t reaching folks. Which at that point, became the story worth sharing.” 

D’Angelo is a public health researcher who focuses on insurance and cost-related barriers to PrEP and other LGBTQ health-related care. She, along with coauthors Viraj Patel, MD, MPH, Adam Carrico, PhD, and Christian Grov, PhD, MPH, recently published findings from the AMETHST cohort (MPIs Grov/Carrico) in JAIDS. The article shares insights about the challenges that people experienced finding, being prescribed, and maintaining injectable PrEP, and goes a step further to describe ways in which we might improve access to new long-acting PrEP options. 

The study included a total of 5,365 participants (gay, bi, and men who have sex with men, and trans and non-binary folks) recruited largely from geosocial networking applications. 61% of people reported being interested in injectable cabotegravir when they began the study, in 2022-2023. (At this point in time, cabotegravir was the only injectable PrEP option available.) After 12 months, 1,462 people had started PrEP, with 42 people who had used injectable PrEP. By the most recent assessment timepoint, in 2024-2025, a total of 57 individuals had taken injectable PrEP in the previous year.

The researchers asked people who had used injectable PrEP about the challenges they experienced taking it. A third of people (19) said they had difficulty “getting my insurer to pay for injectable PrEP.” Others reported issues finding a provider to prescribe it, and finding a clinic or pharmacy to administer it. 

Participants said that “going to follow-up appointments,” “going to injection visits,” “maintaining insurance coverage,” and “cost” posed challenges to maintaining long-acting injectable PrEP. 

“I’m not surprised that insurance challenges were some of the most frequently reported barriers, because we know that cabotegravir is an extremely expensive drug,” said D’Angelo. “Expensive drugs come with insurance and cost-related barriers–that’s how insurers contain costs. I critique that as a researcher and an advocate, but I also understand that [insurance companies] are behaving in a way that’s rational to them.”

List prices for each injectable medication exceed $20,000 annually, while generic versions of oral Truvada can be as low as $30 for a month’s supply. 

D’Angelo explained that the high cost causes insurance companies to restrict access, and may also limit the number of clinics and pharmacies that can purchase and provide these medications—challenges that are likely to repeat with the rollout of twice-yearly, lenacapavir.  

“There are physician practices and clinics that just don’t have the resources to purchase injectable PrEP up front—and then there are others who will be resistant to the financial risk,” said D’Angelo. “If an injectable drug is billed as a medical benefit, that often means the clinic has to pay for the medication first, and then bill the insurer afterwards. That may be fine for a clinic that has a lot of resources or for a program administering injectable drugs already. But for smaller practices or primary care practices with fewer resources, they may not be willing or able to take the risk that an insurer may not pay them back for it in full—and that can translate into access issues for patients.”   

SFAF’s sexual health clinic Magnet at Strut does provide injectable PrEP to clients, although the overall number of people accessing long-acting PrEP is small in comparison to the number of people taking oral PrEP. SFAF employs a team of navigators to help people beginning PrEP navigate insurance challenges, patient assistance programs, and other pharmacy benefits. The burden can be especially high on navigators starting people on injectable PrEP. 

“It’s not a same-day process,” said Alton Lou, manager of health navigation at SFAF. “It can take on average two weeks to help a client work out exactly how they will pay for injectable PrEP and take advantage of insurance and other benefits. First, we do a benefits investigation where we find out if the insurance company requires the medication to be billed as a medical or pharmacy benefit–and this can take three to five days. Because we’re not set up to do medical billing, we need to refer clients out if insurers have this requirement. If it can be billed as a pharmacy benefit, we are then able to make a plan on acquiring the medication, getting it from the pharmacy, and scheduling the first injection. We then can work out prior authorizations, and help people take advantage of any patient assistance programs.”  

For SFAF clients at least, the good news is that the vast majority of clients are able to pay nothing for PrEP. 

“I’d say that more than 90% of our clients don’t pay anything for their PrEP medications–whether it’s oral PrEP or an injectable,” said Lou. “We do see challenges to accessing injectable PrEP, but that’s exactly what our benefits navigators are here to solve.” 

Many clients who use the services at SFAF have other sources of health care, but come to SFAF in order to take advantage of insurance and benefits navigation. Many primary care providers simply don’t have the knowledge, access to navigators, or are unwilling to manage getting injectable PrEP approved for patients, explained Jorge Roman, RN, MSN, FNP-BC, AAHIVS, who leads SFAF’s sexual health clinic.  

People without access to a competent team of benefits navigators to help sort out insurance issues will require other solutions. 

“These are such structural issues that are causing challenges in access,” said Lou. “It comes down to how different insurance companies cover these medications, and it can be so complicated–even for benefits navigators. We spend a lot of time on the phone troubleshooting issues that come up.” 

“We have to solve these problems,” said D’Angelo. “On the implementation science end, we need to disentangle exactly what’s happening, and at the end of the day, we need to close these gaps. There’s an urgency here, because we want to be able to take informed action and advocate for lower drug prices and policies that are favorable for injectable PrEP insurance coverage and access.”

Source: 

D’Angelo, A. and colleagues. To err is human, to persist is diabolical: Are we repeating the same cost and insurance coverage mistakes again with injectable PrEP? JAIDS, 2025.