Black Treatment Advocates Network

Wellness Watch by Chael Needle

Sustain & Maintain
With the help of A. Toni Young & CEG, the Black Treatment Advocates Network rolls out in D.C.

A. Toni Young, executive director of Community Education Group (CEG). Photo courtesy CEG
A. Toni Young, executive director of Community Education Group (CEG). Photo courtesy CEG

“We get to zero by getting people into care, getting them access to treatment, and making sure that they understand the value of treatment…but in order to do that we need to have the right people trained to deliver those messages,” says A. Toni Young, executive director of the Washington, D.C.-based Community Education Group (CEG), about reducing drop-offs at every step along the continuum of care.

CEG recently became a local partner in the Black Treatment Advocates Network (BTAN), a nationwide initiative launched by the Black AIDS Institute, in partnership with Merck. D.C. is now the thirteenth city in the network, joining Houston, Los Angeles, and Miami, among others.

National in scope, and ever-expanding, BTAN is responding to the disproportionate impact of the epidemic on Black communities. Committed to the idea that knowledge means little if it isn’t transformed into positive action, BTAN’s work involves training, networking, and mobilizing, as well as strengthening Black leadership; its goal: to improve HIV care and treatment for and with African Americans. BTAN helps the Advocates, as they are called, fine-tune their HIV literacy and then supports them in engaging their communities in education and mass mobilization efforts. The Network welcomes anyone willing to make a difference.

One of BTAN’s goals is not simply to increase the numbers of those tested and linked to care, but to “sustain and maintain them in care,” as Young so nicely explains the strategy.

According to the CDC, only one out of four HIV-positive individuals living in the U.S. successfully navigates the steps along the continuum of care—serostatus awareness, linking to care, staying in care, antiretroviral therapy, viral suppression. With more people aware of their status than linked to care, with more people linked to care than staying in care, and so on, a treatment cascade has formed. Young believes that BTAN is a vital and logical next-step, knowing what we know about how few are staying in care long enough to achieve their treatment goals. Along with youth, African Americans are least likely to receive ongoing care and treatment.

D.C., which has the highest rate of HIV prevalence in the nation, is experiencing dual, hard-hitting epidemics, simultaneously affecting African-American heterosexuals and African-American men who have sex with men, explains Young. D.C., she says, has been “ahead of the curve” when it comes to widespread testing, so a particular focus for the Advocates will be on nurturing that deep engagement with HIV/AIDS care. The need is urgent in D.C.: According to CEG, the majority of new HIV cases involve heterosexual sex, and 90.7 percent of those individuals are black.

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BTAN “really gives us the opportunity to train staff on the value of sustained care, not just what we frequently hear about, which is, test [individuals], link them to care, and everything is good and all of a sudden the gates will open and everybody will sing!” Linking to care and treatment, that is, cannot remain a one-time event; it needs to be realized as a recursive process, she says. Otherwise, its value may very well be lost on those in need. That value needs to be nurtured and intensified, and one way to go about, says Young, is “to increase the value that people have in community.”

The shift away from thinking of HIV in purely individualized terms and toward thinking in terms of community viral load is key. Says Young: “If my community talks to that person [living with HIV/AIDS], that person gets to have a better understanding of their relationships to HIV, and HIV in their neighborhood, their community, their city, state, jurisdiction, and then in America. And that’s the beauty of BTAN because…it’s saying, ‘If I go into these communities and train folks I can impact the individual on the ground. But I definitely have the capacity to then do this expansive education to impact community viral load across the U. S. in Black communities.’”

Each local member of the network designs and develops efforts according to different populations, settings, cultural groups, and individuals—and individuals in the context of their communities. Advocates ideally would disseminate the message across different social networks, suggests Young. At a house of worship, on the golf course—wherever you go to build community, HIV literacy can be there, too. Individuals living with HIV/AIDS who are aware of their positive status “may need multiple contacts, need multiple hits; they need to be reinforced over and over about why this treatment is valuable long-term, why staying in care long-term is valuable,” she notes.

Reaching out to as many people as possible has the potential to both scatter and, in doing so, strengthen the effect of education. Speaking from an Advocate perspective, she says: “I don’t know who is going to be the person who is going to guide you to HIV testing; I don’t know who the person is going to guide you to HIV treatment; I don’t know who the person is going to be your support system that says go back to the doctor, after nine months or nine years.” That’s why it’s important, says Young, for Advocates to engage as many people as possible with accurate, sound medical information based on up-to-date knowledge of the treatment cascade, and so on. “We can get to an end of the epidemic, but we have to make sure we’re giving the correct message, because that message can frequently get watered down.…”

In this way, the project goes beyond touting “the end of AIDS” by teaching (and learning) how to accomplish that, and then companioning teaching with doing. “You have to do something! There’s no point in us sitting around all day training, going to a training or going to a seminar, if there is not a call to action at the end,” explains Young. And that call to action is a call to community.

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Chael Needle is Managing Editor of A&U.