Access Challenges for HIV Prevention Medication
Individuals seeking HIV pre-exposure prophylaxis (PrEP) medication have encountered various barriers, including provider unfamiliarity with the drug and incorrect billing practices. One such individual, Matthew Hurley, a 30-year-old from Berkeley, California, reported significant difficulties.
In an instance of potential HIV exposure, Hurley sought testing, which prompted a decision to begin PrEP. PrEP is an antiretroviral medication demonstrating 99% effectiveness in preventing sexual transmission of HIV when taken as prescribed.
After approximately nine months on PrEP, a change in Hurley's health insurance led to seeing a new physician who was reportedly unfamiliar with the medication. Hurley subsequently provided educational information to the physician about the daily pill regimen and quarterly lab work required for PrEP. Despite living in the San Francisco Bay Area, a region with a high concentration of LGBTQ+ individuals and a history of HIV health care advocacy, Hurley noted a knowledge gap regarding PrEP among some medical professionals. Hurley reported that older acquaintances who lived through the AIDS epidemic influenced the decision to use PrEP as a protective health measure.
Following Hurley's advocacy, the physician researched PrEP and proceeded with the prescription.
Billing and Coverage Issues
Beyond initial prescription hurdles, Hurley experienced a series of incorrect medical bills for PrEP-related services, including lab tests and office visits. Under the Affordable Care Act (ACA), most private insurance plans and Medicaid expansion programs are mandated to cover PrEP and associated services as preventive care without cost-sharing. Hurley received multiple bills, appealed denials, and subsequently had some charges corrected. This process reportedly involved over 60 hours across several months to resolve at least six incorrect bills. Billing departments continued to send overdue notices during this period.
In response to these persistent issues, Hurley transitioned to the AIDS Healthcare Foundation, which provided comprehensive care and demonstrated knowledge of insurance formulary navigation for PrEP, eliminating subsequent unexpected bills. Hurley noted that separating sexual health care from primary care created a fragmented healthcare experience.
Beth Oller, a family medicine physician and board member of GLMA (an organization for LGBTQ+ and allied health care professionals), stated that requiring patients to educate and advocate for themselves is a significant burden. Oller also noted that some queer individuals have avoided preventive care for years due to medical stigma.
Guidance for Navigating PrEP Access
To mitigate challenges in accessing PrEP, several recommendations are provided:
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Research PrEP Eligibility: The CDC estimates 2.2 million Americans could benefit from PrEP, though only about a quarter currently receive prescriptions. PrEP is recommended for sexually active individuals, particularly those who do not consistently use condoms, intravenous drug users sharing needles, men who have sex with men, and individuals in relationships with partners of unknown or positive HIV status. Disparities exist in PrEP distribution across racial, gender, and geographical demographics.
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Educate Providers: Patients may need to inform their healthcare providers about PrEP, utilizing available clinical guidelines and resources from state or local health departments, such as the New York State Department of Health AIDS Institute. The CDC also provides PrEP guidelines, though some LGBTQ+ health resources on federal websites have been subject to changes.
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Verify In-Network Lab Services and Billing Codes: Billing errors, such as miscoding PrEP-related lab work as diagnostic instead of preventive, are common. Patients should ensure lab work is conducted in-network to simplify appeals if issues arise. Resources like the PrEP billing and coding guide from NASTAD (an association of public health officials) can assist. Unresolved disputes can be reported to the relevant insurance regulatory agency.
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Explore Cost-Saving Options: Generic versions of PrEP drugs, like emtricitabine/tenofovir disoproxil fumarate (FTC/TDF), are available and often lower-cost. Newer drugs like Apretude and Yeztugo have higher list prices. Patients should check their insurance formulary. Drug manufacturers such as Gilead and Viiv offer patient assistance programs. Prescription price comparison websites like GoodRx can also identify pharmacies with lower out-of-pocket costs.
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Consider Telehealth Services: Telehealth has become an increasingly popular option for PrEP access, especially for those without nearby affirming providers or seeking privacy. In 2024, approximately one in five PrEP users utilized telemedicine. Online pharmacies and services like Mistr and Q Care Plus facilitate PrEP access without in-person appointments, including home lab work options. Telehealth can also connect patients with more providers and offer a comfortable setting for discussing sexual health.
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Seek Affirming Care: Resources like GLMA's LGBTQ+ Healthcare Directory list queer-friendly healthcare providers. Local recommendations from trusted individuals can also help identify suitable options.
KFF Health News and NPR's crowdsourced 'Health Care Helpline' project aims to assist individuals in navigating healthcare system challenges.