Community representatives from around the country were recently invited to provide input on improving access to HIV pre-exposure prophylaxis (PrEP) and strengthening PrEP delivery systems in the United States. More than 250 sites participated in the national listening session that yielded many thoughtful suggestions from a diverse variety of community stakeholders.
PrEP—a daily pill that people at high risk of getting HIV can take to reduce their risk of becoming infected—is a powerful prevention tool. More than one million American adults could benefit from PrEP, a biomedical intervention that is more than 90% effective according to clinical trials.
As we work across the federal government to implement the National HIV/AIDS Strategy’s call for full access to comprehensive PrEP services for those for whom it is appropriate and desired, we wanted to get input from our nonfederal partners. To do so, the HHS Office of HIV/AIDS and Infectious Disease Policy, the White House Office of National AIDS Policy, and the HHS Office of Minority Health hosted a community listening session on Monday, June 20, 2016.
During the session we heard from a dozen organizations that responded to our national call for speakers:
- National Minority AIDS Council
- Men’s Health Foundation
- Philadelphia Department of Public Health
- National Association of County & City Health Officials
- Project Inform
- Gay City Health Project
- U.S. Women and PrEP Working Group
- Pacific AIDS Education and Training Center
- National Alliance of State and Territorial AIDS Directors
- The AIDS Institute
- Whitman-Walker Health
The speakers shared their considerable expertise, passion, and insightful ideas for increasing PrEP access and uptake among high-risk HIV-negative populations. Each speaker shared numerous ideas and recommendations for action by federal, state, and local government agencies; healthcare providers and systems; healthcare payers; and others. Some general themes emerged, including the following:
Barriers to PrEP Access
- Persistent HIV-related disparities. Equal access to PrEP is a key need. People of color, the poor, and the marginalized have been hit the hardest by the HIV epidemic, and these disparities will likely get worse if some people continue to have greater difficulty obtaining PrEP than others. The Affordable Care Act (ACA) has increased access for many, but disparities may worsen in those states that have not expanded Medicaid, particularly in the south, where infections and deaths are already greatest.
- Cost. The cost of PrEP is a barrier for many people and it can be a challenge navigating insurance approvals and assistance programs. Also, many HIV organizations lack the resources to train and retain skilled PrEP navigators to help guide clients
- Lack of information about PrEP. Some people in high-risk communities have not heard about PrEP, or are misinformed, notably, cisgender women and transgender women and men.
- Lack of health care provider awareness.
- Lack of access for young people.
- Stigma. Pervasive HIV-related stigma as well as judgment of PrEP users continues to inhibit many individuals from seeking PrEP and other effective HIV prevention options.
Recommendations to Improve Access and Strengthen PrEP Delivery Systems
- Support public awareness efforts targeting both HIV-affected communities and clinicians, through such means as large-scale social marketing campaigns, public service announcements, and outreach to news media. Ensure that marketing efforts are specifically and appropriately tailored to all of the various populations for whom PrEP is recommended.
- Increase health care provider education and training and set targets for PrEP awareness to ensure full access to comprehensive PrEP services for those whom it is appropriate and desired.
- Increase medication access through public policy means, such as exploring PrEP coverage as a preventive service under the ACA and advocating for the U.S. Preventive Services Task Force (USPSTF) to review the clinical effectiveness of PrEP.
- Develop culturally responsive, practically appropriate PrEP services specifically designed for and delivered to people of color.
- Develop PrEP services for women and transgender women and men that are part of a comprehensive, integrated health care approach that reflects a trauma-informed model of care.
- Develop online and in-person training for PrEP navigators who can help help guide patients through complex PrEP payment and reimbursement systems, and establish networks where PrEP navigators can share strategies, tools, and best practices.
- Continue to support research on an array of PrEP options, such as additional oral formulations, long-acting injectibles, and long-term implants, that may offer new routes for those who find adherence to a daily pill difficult or undesirable.
- Develop methods to assess communities that may benefit from PrEP, and to monitor and evaluate PrEP usage and impact. Use this data to inform local planning efforts.
- Scale up deployment of PrEP in settings where high-risk HIV-negative people seek health care, such as community health centers, sexually transmitted diseases (STD) clinics, syringe services programs (SSPs), family planning clinics, and HIV testing sites.
- Explore access points for youth and explore the approval of PrEP for youth under the age of 18 and the development of clinical guidelines for dispensing PrEP to minors.
These are just some of the many ideas that were proposed.
The listening session was recorded and these ideas will be shared with the Federal workgroups charged with addressing PrEP, along with written comments submitted by others unable to give remarks during the listening session due to time constraints. I encourage you to read all of the suggestions in the documents below. Perhaps some will inspire you with an action(s) that you or your organization could take as together we work to increase PrEP use and ultimately change the course of the HIV epidemic in the United States.
Download the PrEP listening session recording. [mp3 12MB)
Download the speakers’ slide presentations and other recommendations received. [PDF 7MB]