As Out-of-Pocket Costs Go Up for HIV PrEP, So Do Abandonment Rates, Study Finds

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Oral HIV preexposure prophylaxis (PrEP) is 99% effective at preventing IV infection among those who take the antiviral pills. Although an estimated 1.2 million sexually active people in the United States would benefit from it, fewer than one-third of those adults got prescriptions in 2021. The low rate is due to a number of factors, including high out-of-pocket costs for medical visits and laboratory testing needed for ongoing adherence.

In a study published today in Health Affairs, a research team led by Lorraine T. Dean, Sc.D., from Johns Hopkins University, followed 58,529 patients with a new insurance-approved PrEP treatment. The study used data from 2015 to 2019 from ICON’s Symphony Health Integrated Dataverse. Eighty-eight percent of patients were male.

Patients were separated into six out-of-pocket cost categories. Dean and her colleagues found that the higher the out-of-pocket cost, the greater the chance that the person would abandon the prescription. Abandoning a prescription means never filling it. Abandonment rates of 5.5% for a zero-dollar copay jumped to 42.6% if the copy was $500 or more. Even relatively modest copays resulted in large increases in the proportion of people who abandoned PrEP prescriptions. For example, abandonment doubled from 5% to 10% after a cost increase from zero to $10. HIV infection rates were also two to three times higher in those who stopped PrEP.

“It’s shameful, especially in a place as resource-rich as America, to think that a difference of $10 can be the difference in someone being at risk for HIV versus not. We have ways of making and keeping PrEP free and should keep it that way,” Dean said in an email.

The out-of-pocket cost of PrEP is part of an ongoing legal battle over preventive services and coverage under the Affordable Care Act (ACA).

In 2021, the US Preventive Services Task Force (USPSTF) gave PrEP an "A" rating, which under the ACA means insurers have to cover it at no cost to the patient. But in March 2023, a ruling by a federal court judge threw some doubt on coverage. The judge agreed with a lawsuit challenging the ACA preventive care rules that require zero-dollar copays for preventive services with a USPSTF "A" or "B" rating. The Biden administration has challenged that ruling, which hasn't gone into effect, but it still raises the prospect of PrEP copays becoming expensive. An ambitious federal plan to virtually eliminate the transmission of HIV depends heavily on the use of PrEP among people at high risk of being exposed to HIV.

Researchers say that out-of-pocket costs are not the only thing affecting PrEP adherence; even when the copay was $0 there was still some abandonment. Other reasons may include stigma, personal preference not to take PrEP, and lack of transportation to the pharmacy. To eliminate these barriers, the authors suggest a national PrEP program like the Ryan White HIV/AIDS Program.

“These findings have implications for the ongoing legal challenges that will shape future out-of-pocket costs for PrEP,” wrote Dean and her colleagues.