How the Community Education Group Remains Relevant in the City Hit Hardest by HIV

The second in a three-part series about the need for AIDS service organizations that serve Black communities to adapt to the changing landscape.

In Washington, D.C., the Community Education Group (CEG) has worked to stay ahead of the curve of changes in the AIDS epidemic and the broader health-care environment. Nationally known for its extraordinary success in linking people who test HIV positive to ongoing primary care, CEG is increasingly leveraging its HIV expertise to address the broad range of health and social service needs presented by CEG clients and their families. CEG's home is in Washington's Ward 7, where 95 percent of residents are Black. CEG serves residents of four of the city's wards--all of which are located in the southern part of the District of Columbia.

Washington has been more heavily affected by AIDS than any other city in the U.S. HIV prevalence citywide is 2.7 percent, with 4.3 percent of Black Washingtonians living with HIV. Washington also has the nation's highest rate of new AIDS diagnoses. Although Black people account for less than half of Washington residents, they represent 75 percent of all people living with HIV, according to the Kaiser Family Foundation.

When the National Women and HIV/AIDS Project (NWAP), CEG's predecessor organization, was founded in 1993, infections were rapidly growing in Washington's Black community, with an especially heavy toll among Black women. To alter the misperception that AIDS was solely a disease of White gay men, NWAP primarily focused on outreach and culturally appropriate education in its early years. In 1999, when NWAP became CEG, the organization expanded its outreach to heterosexual males and the recently incarcerated, created a broader spectrum of programs and launched an initiative to train other not-for-profits.

A foundation for many of CEG's programs is the organization's work to promote and deliver HIV-testing services. CEG operates eight mobile testing units that conduct outreach, HIV testing and counseling and referral services in diverse neighborhoods on Washington's south side. CEG uses a "saturation approach" that positions the agency as a familiar, trusted resource in each community it serves. With CEG aligning its testing work with the District of Columbia's citywide initiative to increase knowledge of HIV status, the number of individuals tested through CEG rose from 200 in 2006 to more than 10,000 in 2012.

While proud of its contribution toward the city's goal of increasing knowledge of HIV status, CEG soon began grappling with the limited utility of testing on its own. "The real issue," says CEG Executive Director A. Toni Young, "is whether you can find people in six months and whether they are accessing care and remaining in care."

In assessing its service approach, CEG was especially persuaded by the HIV treatment cascade documented by Edward Gardner, M.D., and colleagues. This analysis found that the majority of people with diagnosed HIV infection had yet to achieve viral suppression--because they were not linked to care, failed to receive ARV therapy where medically indicated or had dropped out of care at some point.

In 2010, CEG opted to implement a new service approach for people who test HIV positive. Instead of providing individuals who test HIV positive with a paper referral, CEG immediately schedules a doctor's appointment and pledges to provide transportation for the patient's first five primary care visits. During these client encounters, CEG staff also engages clients to learn whether other factors--such as housing instability, child-care responsibilities or other needs--might be interfering with the ability to remain engaged in care. For individuals who have such needs, CEG works to link the client with the nonclinical support they need to remain in care.

CEG's approach has achieved extraordinary results. In 2012, 98 percent of individuals who tested HIV positive through CEG were actually linked to HIV primary care. CEG's linkage rate far exceeds the national average of 77 percent.

With the Affordable Care Act set to be implemented in stages through 2014, CEG is examining its future directions. A particular focus is to position CEG to help address the broad range of its community's health needs, including hypertension and diabetes, in addition to HIV. "The first rule of thumb [in the evolving landscape] is that it is not a good idea to be focused on a single disease," said Young.

According to Young, the seven core indicators (HIV positivity, late HIV diagnosis, linkage to care, retention in HIV medical care, receipt of ARV therapy, viral-load suppression and housing status) for federally funded HIV programs provide a road map for agencies as they retool for a changing response. "Agencies need to figure out how to track each of those numbers," Young advises. "For nonclinical providers, this means you are going to have to have a different relationship with your clinical partners."

Preparing to adapt to a changing landscape is more than just a good idea for AIDS organizations, Young believes. It may be essential to organizational survival. "My advice to AIDS organizations at this stage is to count the number of providers in your area," Young says. "Look to your left, then look to your right, and hope that you're not the one who's gone in a couple of years."

Next week: How Harlem United in New York City has become one of the most expansive and integrative AIDS service organizations in the nation.

Excerpted from the Black AIDS Institute's State of AIDS Report, "Light at the End of the Tunnel: Ending AIDS In Black America."