When Tami Haught was diagnosed with HIV, she was one day shy of her 25th birthday. The diagnosis did not come as a shock since doctors had determined her fiancé was dying of AIDS several weeks earlier.
In the two decades since, Haught, 48, has turned to expensive prescription drugs to keep the deadly infection in check. In 2005, she began receiving help purchasing her medications through the AIDS Drug Assistance Program (ADAP), a federally funded network of programs in each state that assist low-income HIV and AIDS patients. Since the Affordable Care Act was implemented, ADAP instead has helped her buy an insurance policy to cover a wide assortment of her health care needs.
Nationally, more than 139,000 clients were served by ADAPs in June 2015, according to the latest report from the National Alliance of State and Territorial AIDS Directors (NASTAD), a coalition of state officials responsible for administering HIV and hepatitis programs. About half of those clients were getting help purchasing insurance through the federal health law’s marketplaces or elsewhere, a switch from the program’s historical role of paying primarily for expensive prescriptions.
“We are at a pivotal point in HIV where people are talking about the end of the epidemic,” said Ann Lefert, senior director of the prevention and care program and policy at NASTAD. “It’s hard to imagine that, if the health care coverage changes dramatically—it would be hard to get there in the same speed.”
ADAP is required to choose the most cost-effective way to assist clients. Currently, that option often is financial assistance for purchasing an insurance plan that covers broad health expenses. But before the ACA, when insurance companies could legally exclude customers with pre-existing conditions or charge them very high premiums, buying insurance was difficult for HIV patients.
Consequently, the program focused primarily on helping patients buy the pricey drugs they needed. It struggled to meet that demand, however, often using waiting lists to determine which low-income clients could be helped. The program eventually eliminated the waiting list in 2013.
For many of those low-income patients, it was the only help available, given they weren’t eligible in many states for Medicaid, which generally limited eligibility to children, very-low-income families and people with debilitating conditions.
The ACA’s provisions—principally, the Medicaid expansion undertaken by 31 states and the District of Columbia; subsidies for low-income people buying plans on the insurance marketplace; and consumer insurance protections—enabled ADAP to spend less on purchasing drugs and use its funds more efficiently to help clients buy coverage. They could use the assistance to pay the portion of premiums not covered by federal tax subsidies and expenses not picked up by their plans, such as deductibles and copayments.
While Lefert said she doesn’t anticipate waiting lists returning to ADAP if the health law is partially repealed, other experts worry about how far existing funds can be stretched.
Changes to the health law could interrupt treatment and lead to gaps in care, said Erin Loubier, senior director for health and legal integration and payment innovation at the Whitman-Walker Health clinic in Washington, D.C. And without protections from discrimination based on pre-existing conditions, she said, people could shirk screening for fear of losing their jobs or health insurance.
Haught said she’s surprised that she’s lived 23 years past her diagnosis, which allowed her to see her son graduate and spend time with her grandson, Chase. Taking her medication is critical.
“I will die if I don’t have access to my medication and treatment, and it’s not pretty,” she said. “I’ve seen it. It’s not an easy death.”
Read the full story at Kaiser Health News.