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Challenges in Accessing HIV Pre-Exposure Prophylaxis (PrEP) Care and Coverage

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Challenges Identified in HIV Pre-Exposure Prophylaxis (PrEP) Access and Coverage

Access to Pre-Exposure Prophylaxis (PrEP), a medication designed to prevent HIV infection, presents various hurdles for some patients, encompassing both provider knowledge and insurance billing.

Patient Experiences with PrEP Access

Matthew Hurley, 30, of Berkeley, California, sought PrEP following a partner's positive HIV test. PrEP is an antiretroviral medication that has demonstrated 99% effectiveness in preventing sexual transmission of HIV when taken as prescribed. Initially, Hurley encountered a healthcare provider unfamiliar with PrEP after a change in health insurance. This required Hurley to provide educational information to the physician regarding the medication and its regimen, which includes daily pills and quarterly lab work.

Despite living in the San Francisco Bay Area, a region with a significant LGBTQ+ population and a history of HIV activism, Hurley found this lack of provider awareness surprising. The first PrEP drug, Truvada, received FDA approval in 2012. After the physician conducted further research, PrEP was prescribed.

Subsequent to obtaining the prescription, Hurley faced difficulties with billing. Several bills were received for PrEP-related services, such as blood tests ($271.80) and office visits ($263). Under the Affordable Care Act, most private insurance plans and Medicaid expansion programs are mandated to cover PrEP and associated services as preventive care without cost-sharing. Hurley identified these bills as incorrect due to miscoding, where services were initially billed as diagnostic rather than preventive.

Hurley engaged in an appeal process for approximately six incorrect bills over several months, estimating over 60 hours spent on these efforts. The appeals process eventually led to the insurer covering the services after coding corrections. Subsequently, Hurley transitioned to the AIDS Healthcare Foundation, where the care team demonstrated familiarity with PrEP regimens and insurance navigation, resolving billing issues.

This experience highlighted a systemic burden on patients to be knowledgeable advocates for their own care. Dr. Beth Oller, a family medicine physician and GLMA board member, noted that some queer individuals have avoided preventive care due to medical stigma.

Guidance for Navigating PrEP Access

1. Understand PrEP Eligibility:

  • The CDC estimates that 2.2 million Americans could benefit from HIV prevention drugs; however, less than 25% of this group are currently prescribed them.
  • Jeremiah Johnson, executive director of PrEP4All, indicated a general lack of awareness regarding PrEP's availability and applicability.
  • CDC clinical guidelines recommend PrEP 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 living with HIV or whose HIV status is unknown.
  • Disparities exist in PrEP distribution across various demographics, including race, gender, and geography. For instance, cisgender Black women are identified as a population that could significantly benefit from PrEP based on new infection patterns in the U.S.

2. Address Provider Knowledge Gaps:

  • Patients may encounter healthcare providers who are not fully informed about PrEP. Resources such as state or local health department guidelines and CDC guidelines for providers can be shared. Note that some federal LGBTQ+ health resources have been subject to changes.
  • The CDC encourages primary care providers to prescribe PrEP, indicating that specialized HIV expertise is not a prerequisite.

3. Navigate Insurance and Billing:

  • Billing errors, particularly concerning lab expenses, are common. Misclassification of PrEP-related lab work as diagnostic rather than preventive can result in unexpected patient bills.
  • The NASTAD organization offers a PrEP billing and coding guide that can be utilized to address incorrect billing. Patients are advised to ensure lab work is performed in-network to facilitate appeal processes.
  • Unresolved billing disputes can be escalated by filing a complaint with the relevant insurance regulatory agency.

4. Explore 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. Newer PrEP drugs like Apretude and Yeztugo carry higher list prices.
  • Patients should consult their insurance formulary to confirm coverage for specific medications and discuss options with their physician.
  • Pharmaceutical companies, including Gilead and Viiv, offer assistance programs for eligible patients. For uninsured individuals, prescription price comparison websites like GoodRx can assist in locating pharmacies with lower costs.

5. Consider Telehealth Services:

  • Telemedicine has become an increasingly utilized option, with approximately 20% of PrEP users accessing care via telehealth in 2024.
  • Online platforms such as Mistr and Q Care Plus provide PrEP services without an in-person appointment, often including options for at-home lab work. Some telehealth providers offer cost reduction measures for uninsured patients.
  • Telehealth can broaden access to providers and may offer a more private setting for discussions on sexual health, potentially fostering increased patient honesty and trust, according to Alex Sheldon, executive director of GLMA.

6. Seek Affirming Care:

  • GLMA maintains an LGBTQ+ Healthcare Directory, a searchable database of healthcare providers identified as queer-friendly. Local recommendations can also be a valuable resource.