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NMAC Study: PrEP and HIV Navigation Services Available at Most HIV Organizations

HIV service providers recognize that many individuals struggle to stay engaged in HIV treatment and prevention due to logistical barriers to care, such as finding a physician who prescribes antiretroviral drugs, figuring out how to cover the costs of medication, and addressing other priorities like housing and food security.

Providers have begun offering navigation assistance to help patients proactively address these barriers. Two recent national surveys by NMAC, formerly known as the National Minority AIDS Council, found that approximately 7 out of 10 HIV service organizations now offer HIV and/or PrEP “navigators” whose responsibility is to help consumers initiate and stay engaged in care.

The first survey asked 205 HIV services personnel from across the country whether their organization employs an HIV navigator who recruits, links, and retains individuals in HIV treatment and prevention (e.g. PrEP). Over two-thirds of respondents reported that their organization employs an HIV navigator. Nearly 1 out of 5 of these organizations also employ a PrEP navigator who specializes in linking consumers with PrEP counseling, treatment, and other related assistance.

Almost half of the participants in the navigator survey reported that their organization is minority led. This finding attests to the effort HIV services organizations have made to ensure that their leadership reflects the communities they serve.

The second survey asked 745 employees from various community-based organizations, federal and state bureaus of HIV/AIDS, and academic research centers across the country whether their organization provides PrEP and/or HIV navigators. Slightly over three-fourths of respondents indicated that their organization provides either HIV or PrEP navigation services, or both. Similar to the results of the first survey, exactly half of the participants’ organizations are led by a person of color, and 40% of these organizations have a board of directors consisting of majority people of color.

Without a PrEP navigator, figuring out how to pay for PrEP can be prohibitively difficult for many individuals. The figure below, courtesy of the Centers for Disease Control Division of HIV/AIDS Prevention, shows just a few of myriad eligibility requirements and billing procedures to cover the cost of PrEP care.

Aaron Siegler, an epidemiologist at Emory University who researches how to improve PrEP provision, emphasized that many eligible individuals assume that PrEP is unattainable due to its high cost. These same individuals may avoid seeking care because they cannot afford the medication and are unaware how to navigate the funding schema.

“The funding schema is why you need navigators,” said Siegler. “Nobody other than an expert could navigate this. Even very educated people may not be familiar with these programs. Although it's complex, navigation services can often help consumers get PrEP at low cost or no cost.”

Siegler also highlighted the importance of the NMAC survey finding that about half of HIV services organizations are minority led. After all, the burden of the HIV epidemic disproportionately affects minorities, particularly African-Americans as well as Latinos.

“I find it encouraging that many of these organizations are led by people of color. That's the right trend for a community responding to the epidemic,” added Siegler.

Survey respondents indicated that PrEP navigators are often given different titles depending on the organization. Over half of PrEP navigators are referred to as “community health workers” or “peer navigators,” which demonstrates that many organizations have succeeded in enlisting the support of community members to help fight the epidemic in their own social circles.

The NMAC report nicely demonstrates the availability of navigator programs across the country. The next step is advertising these services more broadly to engage consumers who are not already receiving HIV treatment or prevention. Only about 20% of organizations with HIV and/or PrEP navigators currently advertise on social media. A PrEP coordinator at Open Health Care Clinic in Baton Rouge, Louisiana, noted the success of a PrEP campaign at the University of California – San Francisco – that used #Truvotter in its promotional materials. Social media campaigns like this one are helpful for drawing younger populations, who heavily use platforms like Facebook, Instagram, and Twitter, into PrEP care.

Unless PrEP is deployed with special attention to communities of color, existing health disparities will intensify further. This means providers need to scale up marketing to consumers who have been left out of the HIV and PrEP care continuum. As the NMAC report shows, HIV services organizations largely have succeeded in making HIV and PrEP navigation services available. Extending these services to the people who need them most is the critical next step to tackling the epidemic.