Breaking Barriers in PrEP Access: Challenges and Opportunities

GLAD founded its AIDS Law Project in 1984 at a time when many people died within months of diagnosis. It would have been unfathomable to the hundreds of thousands of young people who died in the first three decades of the HIV epidemic – and to the parents, children, spouses, partners, friends, and caretakers who survived them – that there would one day be a fully effective daily pill that prevents HIV transmission by close to 100 percent. PrEP is just that. Yet less than a third of the people who need PrEP (HIV pre-exposure prophylaxis) are taking it because formidable barriers from insurance practices to stigma to racial inequities remain.

Black man at march holding a sign. The sign has a pink triangle with the words "Silence = Death" in white underneath.
Photo credit: Michael Fleshman

PrEP remains under-utilized, particularly among communities most at risk for HIV transmission. In 2022, the CDC reported that only 13% of Black people and 24% of Latinx people eligible for PrEP received it, compared to 94% of eligible white people. This stark disparity underscores the urgent need for intervention.

GLAD has been fighting impediments to PrEP access and working to pass laws that will expand the avenues for people to receive PrEP, especially new forms of PrEP such as long-acting injectables. Recently, the US Court of Appeals heard arguments in Braidwood v. Becerra. In this case, a Texas Court struck down a requirement under the Affordable Care Act that insurers cover PrEP without any charge to the patient. GLAD filed a friend-of-court brief in the case, which reminded the Court of the profound suffering and death experienced by so many earlier in the epidemic.

Working with epidemiologists at Yale, we also calculated the increase in HIV infections if the court upholds the elimination of this important ACA provision. We concluded that there would be at least 20,000 additional preventable HIV infections in 5 years at a cost to the healthcare system of 8 billion dollars! This harm will disproportionately impact people of color who have the least access to PrEP now. We hope this critical information about the consequences of its decision will help the Court understand the importance of maintaining the ACA’s protections.

GLAD has also been working to pass state laws to challenge other barriers to PrEP. Prior authorization, an insurance practice requiring delays while patients wait for coverage approval, significantly impedes access to new long-acting injectable forms of PrEP. Injectable PrEP is a crucial option for people who, because of their circumstances, such as homelessness or fear of disclosure, are not able to adhere to a daily pill regimen. Prior authorization requirements create delays and mean people do not follow up for care. Even after the delay, insurance companies frequently deny approval.

GLAD is working with our partners on bills in Rhode Island and Massachusetts that would prohibit insurers from imposing prior authorization or cost sharing for any HIV prevention medication. The legislation has passed the Senate in Rhode Island. If signed into law, it would be the first of its kind and could build momentum for similar initiatives in other states. Previous victories, such as ensuring PrEP access for eligible minors in Massachusetts and Connecticut, and enabling pharmacy access without an initial doctor’s prescription in Maine and Rhode Island, demonstrate how far we have come in breaking down barriers.

We have the medical tools to end the epidemic. But now we need the laws and policies that will make access to PrEP a reality for all.

This story was originally published in the Summer 2024 GLAD Briefs newsletter. Read more.