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Youth HIV Prevention
The Federal Response to Youth HIV Prevention Isn’t Bold Enough … Yet

Released: September 06, 2023

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Key Takeaways
  • Young people (13-24 years of age) have unique barriers to PrEP access, including lack of accurate medical education, insurance coverage, and affordable care.
  • Although Congress has introduced a pair of bills to improve access to PrEP, expanded efforts may be necessary to improve access for young people. 

The CDC reports that in 2021, young people (13-24 years of age) accounted for 19% of all new HIV diagnoses in the United States. The HIV epidemic continues to affect young people because of policies severely limiting access and affordability of prevention resources, which include medically accurate HIV education in schools, HIV testing, and HIV prevention medication known as pre-exposure prophylaxis (PrEP). PrEP reduces the risk of contracting HIV from sex by approximately 99% when taken as prescribed. Oral emtricitabine/tenofovir disoproxil fumarate was approved by the FDA in May 2018 for PrEP for young people. However, limitations surrounding access, awareness, and affordability continue to affect young people of color and LGBTQ+ youth, who often have low rates of PrEP use, have low income, and lack insurance. 


Unfortunately, access to HIV prevention resources for young people varies by state. For instance, only 17 states require medically accurate HIV education. Inaccurate HIV education leaves young people misinformed about their prevention, treatment, and care options. In May 2023, members of the House of Representatives introduced the Real Education and Access for Healthy Youth Act (REAHYA), which aims to expand medically accurate HIV prevention education in US schools and provide linkage to sexual health services, such as PrEP, for young people who face the most significant barriers to care. REAHYA is the only federal bill currently debated that explicitly seeks to promote access to PrEP for young people.


Members of the Senate also introduced the PrEP Access and Coverage Act (PACA) in June 2023. PACA aims to require all private and public insurance plans to cover PrEP and related services with no out-of-pocket costs for patients. The legislation aims to ensure that uninsured individuals can access PrEP. Nevertheless, the legislation fails to explicitly mention adolescents and ignores their unique financial and privacy challenges when accessing and affording PrEP, which include limited payment options and insurance coverage, fear of disclosure to parents, and lack of awareness regarding whether payment assistance programs cover young people and all PrEP-related fees, such as lab and testing services and clinic visits. PACA addresses the importance of covering PrEP-related costs and privacy concerns, but failing to specifically state that this increased access to PrEP includes adolescents, leaves them in the dark.


In addition to proposed legislation such as REAHYA and the federal Ending the HIV Epidemic initiative, a new federal solution is needed to ensure that young people can realistically access and afford PrEP. Members of Congress must support the additional $50 million requested by the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies in the 2024 spending bill for a national PrEP program within the CDC’s Division of HIV Prevention.


A national PrEP program would streamline access to PrEP medications, enhance and amplify adolescent clinical care for PrEP, and create a new network of PrEP access points in the community. The federal government would purchase PrEP medications to secure fair public health prices and guarantee availability for uninsured young people. Access will be simplified for healthcare professionals and young people alike. Healthcare professionals will have new options to provide on-site, same-day PrEP and to refer young people to needed laboratory testing. Young people without regular sources of healthcare will be able to get PrEP through telehealth at trusted neighborhood locations, such as adolescent health centers, teen clinics, and nonprofits that support LGBTQ+ youth.


The federal strategy for addressing HIV among young people must be bolder. We must ensure that PrEP access reaches everyone, including young people. A national PrEP program—dreamed up by PrEP4All; Johns Hopkins University faculty; more than 30 experts in HIV, pharmaceutical, and laboratory policy; federal partners; government public health leaders; and PrEP consumers—is a brilliant start.


Your Thoughts?

How should a federal program for improving PrEP access and affordability for young people be implemented? Join the conversation by leaving a comment.