PrEP insurance denials occur frequently in US, nationwide survey reveals

Insurance denials of HIV pre-exposure prophylaxis (PrEP) remain a common occurrence in the U.S., despite a coverage mandate under the Affordable Care Act, according to recently published study data. Although the findings reflect only a subset of the eligible population—cisgender women were excluded—they highlight persistent structural obstacles to all forms of PrEP (even generics), and overcoming those will require extra steps from providers.

Highlighted Study Population and Methods

The study utilized screening survey data from the American Transformative HIV Study, a longitudinal, nationwide cohort that focuses specifically on “sexual and gender minority” people who have sex with men (i.e., people who identify as gay, transgender, queer, non-binary, etc.). Volunteers were recruited from August 2022 to July 2023 using advertising on social network apps. People who reported being over 16 years of age from the United States and its territories who reported current or former PrEP use were included. Cisgender women assigned female at birth were excluded.

Data from this study involved 11,410 survey respondents; their mean age was 36.2 years (range 17-82). By self-report, 51.7% were white, 23.9% Latino/X, 10.9% Black, 5.1% Asian. In terms of gender and sex, cisgender men comprised 86.2% of the cohort; 75.6% identified as gay; 13.2% identified as bisexual; 2.6% identified as transgender women; and 5.6% identified as nonbinary.

The study outcome measures were insurance denials (i.e., whether a respondent reported ever having their PrEP coverage denied) and cost sharing (i.e., whether a respondent reported paying out-of-pocket expenses for PrEP-related prescriptions, laboratory diagnostics, or clinic visits) over the past two years.

Statistical analyses were performed to test for associations between outcome variables, demographic and geographical factors.

Key Findings

Insurance Denials

• 23.7% (n=2,703/11,410) reported at least one prescription denial for PrEP.

• Of these, 69.4% occurred after 2021 (when U.S. Preventive Services Task Force mandated PrEP coverage).

• PrEP prescription denials by drug:

  • TAF/FTC (Descovy): 48.2%

  • TDF/FTC (Truvada): 33.4%

  • Cabotegravir (Apretude): 9.9%

  • Generic TDF/FTC: 8.5%

• No significant differences of insurance denials by race, gender, or state Medicaid expansion status.

Cost Sharing

• 34.6% (n=3,945/11,410) experienced cost sharing for PrEP in the past two years.

• Of these, 61.5% occurred among privately insured individuals.

• White (36.9%) and Asian (36.7%) participants were more likely to report cost sharing than Black participants (28.6%).

• Types of cost sharing (and frequency) reported:

  • Lab work: 58.3%

  • Prescriptions: 26.6%

  • Physician checkups: 10.6%

Read an expert analysis from Benjamin Young, M.D., Ph.D. at TheBodyPro.