Amplifying the Voices of People Living with HIV in Alabama
Southern REACH provides opportunities for the HIV community to make their voices heard about polices and decisions that impact their lives
“When people think of HIV, they think of New York or San Francisco; they don’t think of Alabama. But we can’t get to an AIDS-free generation if we don’t address the problems in the South. The REACH funds are helping us do exactly that.”
—Lauren Banks, Chief Policy and Advocacy Officer
Southern REACH: Cultivating Leadership
AIDS Alabama’s Southern REACH program is called SHAPE (Strengthening HIV/AIDS Advocacy and Policy Efforts). The central focus of SHAPE is to raise awareness about the devastating impact that HIV is having in the South, especially Alabama, and to make sure that policy and resource allocations address the needs of people living with HIV in the region.
“Advocating for Alabama’s share of Ryan White Program funding is a big part of what we do,” says Chief Policy and Advocacy Officer Lauren Banks.
The Positive Leadership Council (PLC) is another essential activity. For the past three years, SHAPE has trained people living with HIV to become community leaders and advocates.
Eight PLC members meet on a monthly basis to discuss emerging issues and strategize about appropriate actions. Those activities include:
- Presenting at churches and community groups about the needs of the HIV community.
- Conducting statewide trainings for people living with HIV, teaching them how to advocate for policy issues important to the HIV community.
- Traveling to Washington, DC, to speak to congressional members.
- Organizing an annual HIV/AIDS educational and lobbying event.
The annual HIV/AIDS educational and lobbying event involves a march to the state capitol building and face-to-face meetings with legislators. It’s an event that typically attracts more than 350 participants and is run entirely by PLC members. “They do everything from serving as keynote speakers to reviewing materials and handing out nametags,” Banks says.
For people living with HIV who participate in PLC, the group has shown them how to advocate for their own interests, as well as the interests of those who may not be able to speak for themselves. “[It’s the chance] to represent the African-American women in my area,” says PLC member Cynthia Rodgers. “Women who may not have the opportunity or the willingness to voice their needs to the folks who can help meet those needs. PLC provides the training, camaraderie, and support I need personally and professionally,” she adds.
“To me, PLC means empowering HIV-positive individuals to learn how to advocate at all levels of government,” says Janet Johnson, another PLC member, “about the needs and gaps in services for those living with this now chronic and manageable disease.”
PLC means empowering HIV-positive individuals to learn how to advocate at all levels of government.
Policy Successes that Lead to Healthier Lives
AIDS Alabama’s Southern REACH advocacy work has led to substantial and far-reaching policy changes. For example, in recent years many states have seen drastic cuts in their AIDS Drug Assistance Programs (ADAP), which provides funding for HIV medications under their Ryan White HIV/AIDS Program Part B grants.
“The fact that we haven’t lost [ADAP] funding — that’s been huge,” says Banks. And that success is directly attributable to the intense advocacy work that Southern REACH supports.
The fact that we haven’t lost [ADAP] funding — that’s been huge.
“The PLC is putting a personal message on it,” she explains. “They’re meeting with their legislators and organizing marches. We know that if we weren’t doing that, it would be a whole lot easier to cut our funding,” she adds. “But we show up year after year and say we’re still here. We still need help.”
Another huge success involves how the Alabama public health department uses its ADAP funds.
Soon after the Affordable Care Act (ACA) was passed, AIDS Alabama recognized that the law presented a unique opportunity. Because the ACA prohibits exclusions for preexisting conditions, many people living with HIV who were previously unable to qualify for insurance would now be able to do so.
If AIDS Alabama could convince the state health department to use ADAP funds to purchase health insurance for people living with HIV — instead of buying medications directly — they could dramatically improve access to a broad array of health care for people who live with HIV.
AIDS Alabama took action. Because of Southern REACH, they were able to develop an issue paper and hold multiple meetings with state health officials. AIDS Alabama even promoted the idea at its annual lobbying event.
As a result, the state is now buying health insurance for people living with HIV, and for the first time a lot of people have insurance. “This means that their HIV is being treated, but so are other issues such as diabetes, heart disease, or just the common cold,” Banks explains.
“For the same amount of money, you’re taking care of people. And we know that a more holistic approach to health care is better than just treating one thing,” she adds. “We are so proud of this!”