Challenges and Patient Experiences in Accessing HIV Pre-Exposure Prophylaxis (PrEP)
Matthew Hurley, a 30-year-old resident of Berkeley, California, encountered various obstacles while attempting to access PrEP (pre-exposure prophylaxis) medication for HIV prevention. These issues included a healthcare provider's unfamiliarity with the medication and subsequent billing inaccuracies.
Initiating PrEP
Hurley sought PrEP after receiving notification that a sexual partner had tested positive for HIV. Following confirmation of an HIV-negative status, Hurley began a PrEP regimen. PrEP is an antiretroviral medication demonstrated to be 99% effective in preventing sexual transmission of HIV when taken as prescribed.
Initially, Hurley's PrEP regimen progressed without complications. However, a change in health insurance and primary care physician led to a situation where Hurley's new doctor was not familiar with PrEP. Hurley provided information to the physician regarding the daily medication and the necessity of quarterly laboratory tests. Despite living in the San Francisco Bay Area, a region known for its LGBTQ+ population and history of HIV health activism, Hurley's knowledge of PrEP exceeded that of the healthcare provider. Following independent research by the physician, PrEP was prescribed.
Systemic Healthcare Hurdles
Patients may find it challenging to educate their healthcare providers about specific medications like PrEP. Beth Oller, a family medicine physician and board member of GLMA, a national organization for LGBTQ+ and allied health professionals, noted that some individuals have postponed preventive care due to past negative experiences within the medical system.
Medical Billing Complications
After initiating PrEP, Hurley received multiple bills for related services, including blood tests and office visits, totaling several hundred dollars. Hurley was aware that the Affordable Care Act (ACA) mandates most private insurance plans and Medicaid expansion programs to cover PrEP and associated services, such as lab tests, as preventive care without patient cost-sharing.
Hurley appealed these bills multiple times, often facing initial denials. In one instance, a billing office confirmed that blood work had been erroneously coded as diagnostic rather than preventive. Rectifying this coding error resulted in the insurer covering the service. The process of resolving six incorrect bills over several months required an estimated 60 hours of Hurley's time, during which overdue payment notices continued to be issued.
Subsequently, Hurley transferred care to the AIDS Healthcare Foundation. The care team there demonstrated comprehensive knowledge of different PrEP regimens and navigating insurance formularies. This change eliminated further unexpected bills, although it necessitated managing healthcare across multiple organizations. The Centers for Disease Control and Prevention (CDC) recommends that primary care providers integrate PrEP management as a routine preventive medical service.
Recommendations for Navigating PrEP Access
To address challenges in accessing HIV prevention medication, the following recommendations are offered:
- Assess PrEP Eligibility: The CDC estimates that 2.2 million Americans could benefit from HIV prevention drugs, with approximately one-quarter currently prescribed them. PrEP is indicated for sexually active individuals, particularly those who do not consistently use condoms, intravenous drug users who share needles, men who have sex with men, and individuals in relationships with partners whose HIV status is unknown or positive. Disparities in PrEP distribution exist across racial, gender, and geographical demographics.
- Engage with Healthcare Providers: Patients may need to provide their healthcare providers with information about PrEP. Clinical guidelines and state or local health department resources, such as those from the New York State Department of Health AIDS Institute, are available for providers. CDC PrEP guidelines are also published, though some federal LGBTQ+ health resources have undergone revisions due to administrative policy changes.
- Verify In-Network Lab Work and Billing Accuracy: Billing errors for PrEP-related lab work are prevalent, often resulting from diagnostic coding rather than preventive coding. Resources like the NASTAD PrEP billing and coding guide can assist patients and providers. It is advisable to obtain lab work from in-network providers to simplify potential appeals. Unresolved billing disputes can be escalated to the agency responsible for regulating the insurance plan.
- Explore Cost-Saving Options: Generic versions of Truvada (emtricitabine/tenofovir disoproxil fumarate, or FTC/TDF) are available at lower costs compared to newer medications like Apretude and Yeztugo. Patients should review their insurance formulary for coverage details. Pharmaceutical manufacturers (e.g., Gilead, Viiv) provide patient assistance programs. Prescription price comparison websites, suchs as GoodRx, can identify pharmacies offering lower out-of-pocket costs.
- Consider Telehealth Services: Telehealth presents an alternative for PrEP access, beneficial for individuals lacking local affirming providers or seeking enhanced privacy. In 2024, approximately 20% of PrEP users utilized telemedicine. Online pharmacies such as Mistr and Q Care Plus offer PrEP with remote consultations and options for at-home lab work, some extending cost-reduction opportunities to uninsured patients. Telehealth can expand provider availability and may facilitate more candid discussions about sexual health.
- Identify Affirming Care Providers: The GLMA LGBTQ+ Healthcare Directory provides a searchable database of queer-friendly healthcare providers nationwide. Recommendations from trusted local sources may also assist in identifying suitable care options.