In 1985, Carolyn McAllaster’s brother, Joseph McAllaster, tested positive for HIV.
He was living in Boston during the early years of the AIDS epidemic. Friends were dying, and he was going to a lot of funerals.
Though 700 miles apart, the siblings were close.
“He was someone I could talk to,” McAllaster said. “He was an extrovert, so he shared a lot of stories about the discrimination his other gay friends experienced.”
Joseph had a friend from South Africa whose parents disowned him when they found out he had AIDS. His friend died with no family, so the gay community stepped up to create a family for him.
On June 18, 1993, when Joseph died after an eight-year battle with HIV, McAllaster made a decision.
“I was struck by the stigma and discrimination that people with HIV/AIDS faced,” she said. “I felt that I had the skills to help with both legal issues facing people living with HIV and advocacy for more resources to fight the epidemic.”
She began using her law degree to help people living with HIV/AIDS in Durham, writing wills and powers of attorney. Later as a law professor at Duke University, she began creating volunteer opportunities for her students.
In 2010, she founded North Carolina AIDS Action Network to increase visibility and support of people living with HIV and AIDS throughout the state. She also founded the Health Justice Clinic at Duke and is the director of the Southern HIV/AIDS Initiative.
After many years of HIV/AIDS work, McAllaster is retiring this month. In May the Elton John AIDS Foundation donated a $75,000 grant to the AIDS Action Network in her honor.
“Carolyn has always been a force to be reckoned with in the HIV policy world,” executive director Lee Storrow said. “We’re thrilled to carry on her legacy on an annual basis through this scholarship.”
Since starting in 1993, Elton John’s U.S. and U.K. nonprofit organizations have raised over $300 million. The U.S. organization awards more than $6 million in grants every year.
The foundation has a long relationship with the AIDS Action Network, providing about $500,000 over the past nine years. The grant honoring McAllaster requires the network to raise a matching $75,000 by December 2020. It has raised $20,000 so far, Storrow said.
The AIDS Action Network has successfully stopped legislation that would have taken away minors’ rights to consent to sexual and mental health testing and treatment. It has also helped to keep the N.C. HIV Medication Assistance Program funded and has worked with the state legislature to create a state-wide plan to end the epidemic.
“We have had great advancements in the past, so it’s easy for people to brush HIV off as a public policy issue, especially if you’re not in the field,” Storrow said. “The work we do keeps the issue on the front-burner and makes sure people living with HIV still have resources and public policy programs to live long healthy lives.”
Deep South epidemic
Both Storrow and McAllaster said HIV/AIDS funding remains especially critical in southern states.
“The Deep South, which includes North Carolina, has 52 percent of all new HIV diagnosis in the country,” McAllaster said. “(It) has the largest percentage of HIV-related deaths. So this is really the epicenter in the South, and there is a lot of work to be done.”
The “Deep South” consists of nine states: Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas.
SASI research, led by a team at the Duke Center for Health Policy and Inequalities Research, found the states “share characteristics such as overall poorer health, high poverty rates, an insufficient supply of medical care providers and a cultural climate that likely contributes to the spread of HIV.”
McAllaster said stigma, lack of transportation or housing, and mental illnesses also affect people’s ability to get and stay in health care.
According to AIDSvu data, North Carolina counties had an average rate of 355 people living with HIV/AIDS per 100,000 people in 2015.
Inspired by clients
Throughout her work McAllaster said she has been affected most by people’s courage and resilience.
“I had so many clients who had significant trauma in their past,” she said. “You would think the people in situations like that would be so worn down, sometimes I would think, ‘How do these people get up in the morning?’”
The foundation money will continue to fund a scholarship in McAllaster’s name and set-up an endowment at the N.C. Community Foundation to create long-term sustainability for the AIDS Action Network’s work, Storrow said.
The annual scholarship will fund the trip costs for a North Carolina advocate to attend AIDSWatch, America’s largest HIV/AIDS advocacy event.
“I think my brother would be proud,” McAllaster said. “I think he would have been right there beside me because he was doing a lot of work with support groups, even before he died. He would have been shoulder-to-shoulder with me and really glad that this is how I spent my career.”