Accessing HIV pre-exposure prophylaxis (PrEP) medications presents various challenges for individuals, including inconsistent knowledge among healthcare providers and administrative issues related to insurance billing. Despite the medication's high effectiveness in preventing HIV transmission, only a fraction of eligible individuals in the United States currently receive prescriptions.
Understanding PrEP and Its Efficacy
PrEP is an antiretroviral medication designed to significantly reduce the risk of acquiring HIV. When taken as prescribed, it demonstrates 99% effectiveness in preventing sexual transmission of the virus. The first PrEP drug, Truvada, received U.S. Food and Drug Administration (FDA) approval in 2012.
The Centers for Disease Control and Prevention (CDC) estimates that 2.2 million Americans could benefit from HIV prevention drugs. However, approximately one-quarter of this population has received prescriptions for them. PrEP is recommended 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.
Barriers to PrEP Access
Provider Knowledge Gaps:
Individuals seeking PrEP have reported instances where healthcare providers were unfamiliar with the medication, its regimen (typically daily medication and quarterly laboratory tests for monitoring), or its management. This has required some patients to educate their physicians about PrEP, even in regions with historical HIV health activism, such as the San Francisco Bay Area. Dr. Beth Oller, a family medicine physician and board member of GLMA (a national organization for LGBTQ+ and allied health professionals), noted that this places a significant burden on patients. Some individuals have also delayed preventive care due to prior negative experiences or perceived medical stigma within the healthcare system. The CDC encourages primary care providers to integrate PrEP management as a routine preventive medical service.
Insurance and Billing Complications:
Billing errors constitute a frequent barrier to PrEP access. Under the Affordable Care Act (ACA), most private insurance plans and Medicaid expansion programs are mandated to cover PrEP and its associated services, such as lab tests and office visits, as preventive care without requiring patient cost-sharing. However, patients have received bills where services were initially coded as diagnostic rather than preventive, leading to incorrect charges. Resolving these billing discrepancies can be a prolonged process, often requiring multiple appeals over several months, during which overdue payment notices may be issued.
Matthew Hurley, a 30-year-old from Berkeley, California, encountered both provider unfamiliarity and subsequent billing inaccuracies. After a change in insurance, Hurley's new physician was initially unfamiliar with PrEP, requiring Hurley to provide information. Subsequently, Hurley received multiple incorrect bills for PrEP-related services, including blood tests and office visits, and spent an estimated 60 hours over several months resolving at least six such bills through appeals. Hurley later transferred care to the AIDS Healthcare Foundation, where staff demonstrated comprehensive knowledge of PrEP regimens and insurance navigation, which eliminated further unexpected bills.
Disparities in Utilization:
Data indicates significant disparities in PrEP usage based on race, gender, and geographical location. The majority of PrEP users are men. Based on new infection patterns in the U.S., cisgender Black women represent a demographic that could significantly benefit from increased PrEP access. Jeremiah Johnson, executive director of PrEP4All, indicated a general lack of awareness regarding PrEP's availability and applicability.
Recommendations for Navigating PrEP Access
To address common challenges in accessing PrEP, individuals can consider the following strategies:
- Patient Education and Eligibility Assessment: Individuals interested in PrEP are encouraged to research the medication to determine its suitability for their health needs. Resources from organizations such as the CDC and state or local health departments can provide valuable information and clinical guidelines.
- Engaging with Healthcare Providers: If a healthcare provider lacks familiarity with PrEP, patients may need to share clinical guidelines and prescribing information. Organizations like the New York State Department of Health AIDS Institute offer specific resources for providers. The CDC also publishes PrEP guidelines.
- Navigating Insurance and Billing: Patients should prioritize obtaining lab work within their insurance network. If incorrect bills are received due to services being coded as diagnostic rather than preventive, appealing them is advised. Resources like the PrEP billing and coding guide from NASTAD can assist in this process. Unresolved disputes can be escalated by filing a complaint with the agency regulating the insurance plan.
- Exploring Cost-Saving Options: Generic versions of PrEP medications, such as emtricitabine/tenofovir disoproxil fumarate (FTC/TDF), are available and typically lower in cost than brand-name drugs or newer medications like Apretude and Yeztugo. Patients should consult their insurance formulary and discuss covered medications with their doctor. Pharmaceutical manufacturers, including Gilead and ViiV, offer assistance programs for qualifying patients. Prescription price comparison websites like GoodRx can help identify pharmacies with competitive prices.
- Considering Telehealth Services: Telehealth services are an increasingly utilized option for PrEP access, particularly for individuals in areas without affirming providers or those seeking enhanced privacy. In 2024, approximately one in five PrEP users utilized telemedicine. Online platforms such as Mistr and Q Care Plus facilitate remote consultations and at-home lab work. Some telehealth providers offer cost reduction options for uninsured patients. Alex Sheldon, executive director of GLMA, suggested that telehealth may facilitate more candid discussions about sexual health.
- Seeking Affirming Care Providers: Resources such as GLMA's LGBTQ+ Healthcare Directory provide a searchable database of healthcare providers identified as queer-friendly. Local recommendations from trusted individuals can also assist in locating suitable care options.