When the Affordable Care Act (ACA) was enacted in 2010, the law required coverage of recommended preventive services without cost-sharing for consumers enrolled in most private health plans. However, even with these protections in place, some insurance companies continue to inappropriately impose cost sharing for preventive services. Recently, this problem hit consumers who use pre-exposure prophylaxis (PrEP), a medication that can prevent contraction of HIV. While the federal government has directed insurers that both PrEP and related services (including lab and doctor’s visits) fall under the ACA’s preventive services definition,  reports suggest that some insurers are still improperly requiring co-pays.

Since the ACA’s Protection Went into Effect, Consumers Have Faced Obstacles Obtaining Free Preventive Services

The difficulties consumers face seeking coverage for PrEP and related services without cost sharing are the latest in a long line of challenges related to the ACA’s preventive services requirement. Consumers seeking access to birth control—a preventive service subject to the ACA’s no cost-sharing requirement—have reported various barriers to access, including limited coverage options (insurers are required to cover 18 types of birth control, but don’t need to cover all products) and prior authorization requirements. Consumers receiving colorectal cancer screenings (which are subject to the ACA no-cost sharing requirement in some circumstances) have also reported unexpected cost sharing, with a lack of standardization in provider coding and insurers’ payment standards cited as a key underlying cause.

PrEP coverage is another example of consumers facing out-of-pocket costs for what should be free preventive care. Services that have received an “A” or “B” rating from the U.S. Preventive Services Task Force (USPSTF) are subject to the ACA’s no-cost sharing requirement. PrEP was added to this list in 2019. But access to free PrEP was complicated by the additional care associated with taking the medication (such as quarterly lab tests), which were initially not subject to the ACA’s no-cost sharing requirement. In July 2021, the Departments of Labor, Health and Human Services, and Treasury released guidance clarifying that ancillary and supportive services related to PrEP are considered preventives services subject to the ACA’s cost-sharing protections. Despite this federal guidance, some insurers are imposing a co-pay for ancillary PrEP services. Insurers have suggested this is because providers are failing to code PrEP-related visits as “preventive.” This may be due to by lack of coding requirements for PrEP in the American Medical Association (AMA) coding guide.

Failure to Comply with Preventive Services Protections Disproportionately Impacts Vulnerable Communities

In the United States, HIV incidence is higher in minority populations, with a rate of 42.1 cases per 100,000 people for Black/African American people and 21.7 cases per 100,000 for Hispanic/Latino people, compared to 12.6 cases per 100,000 people in the general population. The groups with the highest incidence of HIV are also the least likely to access PrEP coverage: only 9 percent of Black/African American people and 16 percent of Hispanic/Latino people who are eligible for PrEP were prescribed the drug in 2020, compared to 25 percent of the general eligible population and 66 percent of white people eligible for the medication.

Longstanding racial and ethnic biases in our health system affects the appeals process as well, making the promise of cost-free PrEP and related services even more difficult to fight for among the same communities that could most benefit from it. Black/African American and Hispanic/Latino patients report higher levels of distrust in the medical system compared to non-Hispanic whites, which may discourage further engagement with providers or insurers following an incorrect bill. Gaps in health insurance literacy also complicate the process of filing an appeal: according to a 2013 study from the American Institutes for Research, Black/African American and Hispanic consumers, who are more likely to experience uninsurance due to structural racism, had a lower level of knowledge regarding health insurance terms, plan types, and cost sharing compared to White consumers.

What Can Stakeholders Do to Improve Access to PrEP Ancillary Services and Other Preventive Care?

Insurance regulators, providers, consumer advocates, and insurers can all take steps to make the ACA’s promise of free preventive services a reality, improving access to PrEP ancillary services for communities with the greatest need:

• State Departments of Insurance (DOIs) can publish clear guidance reiterating federal coverage requirements for fully insured plans. As the entity responsible for monitoring and compliance of ACA requirements for fully insured plans, DOIs can proactively monitor complaints received related to preventive services—particularly in the first one to two years following the implementation period — in order to quickly issue corrective action where warranted.
• Insurers can work directly with physicians and pharmacists to inform them of coverage requirements and coding guidelines, to assure that preventive services are coded correctly to translate as no-cost services.
• Provider trade associations and billing entities should conduct educational efforts to make sure that billing staff know how to correctly code preventive service claims.
• Trusted community organizations and local leaders can work directly with their communities to inform vulnerable consumers of their rights to access preventive care under the ACA.
• The U.S. Department of Labor should monitor and respond to complaints by enrollees in self-funded employer plans about inappropriate cost-sharing charges associated with Prep, and require corrective action for plans that fail to provide the required coverage.

Takeaway

Removing cost sharing for preventive services has been associated with increased take-up of preventive health care, a critical tool for improving health and wellbeing. But the experience of consumers facing improper cost-sharing for ancillary PrEP services demonstrates that coverage mandates are only effective if providers and insurers implement them. The federal agencies, state DOIs, and the relevant provider trade associations should prioritize the education, practices, and procedures necessary to ensure that no-cost preventive services are available to patients who need them most.