The centerpiece of the federal government’s war against HIV/AIDS bears the name Ryan White.
The public might not remember him without a little context. A hemophiliac who was diagnosed with AIDS at age 13, White drew international attention when he not only had to cope with the disease but also had to wage a legal fight to attend school with his classmates in Kokomo, Ind., following his diagnosis. He died in 1984 at the age of 18 after becoming a poster child for more compassion, counseling and medical care for those facing AIDS-related illnesses.
Congress created the Ryan White CARE Act in 1990. Since then, it's grown into a multi-billion dollar program, whose funds have helped reduce HIV deaths.
But lately, there is growing concern about the future of the program. Ironically, the concern does not stem from the old stigma associated with Ryan White the person, but from another well-intentioned program: the Affordable Care Act. When Congress passed the ACA, there was an assumption that less money might be needed for the Ryan White program because many people with HIV/AIDS were expected to be eligible for care through the ACA’s expanded Medicaid system.
Existing program meets the new system
Flaws in that health model surfaced when half the states, including Missouri, eventually chose not to expand Medicaid. This development means some HIV/AIDS patients hoping to become Medicaid eligible under ACA have no assurances of long-term medical treatment. Congress might provide enough Ryan White funding to serve them, but nobody is certain of that happening during a period of ongoing national debate over whether cutting the federal deficit should take precedence over more spending.
As a result, Ryan White programs are at risk. And proponents argue that cutting them would put some of the poorest and most vulnerable HIV/AIDS patients at risk. They add that the program has yet to reach tens of thousands of people needing help.
“The very poor living in a state that doesn’t expand Medicaid and doesn’t qualify for a subsidy get left out in a way that wasn’t intended initially in the (ACA) law,” says Jennifer Kates, vice president and director of global health and HIV policy at the Kaiser Family Foundation.
Kates is the lead researcher in the first national analysis of how ACA will affect health insurance coverage for people with AIDS. The report, released this month, was written by researchers at Kaiser and the Centers for Disease Control and Prevention.
The report calls for continuation of Ryan White funding and makes these points about national trends:
- Roughly 407,000 of HIV people getting care have incomes below 400 percent of the poverty level, and 70,000 of them are uninsured.
- About 47,000 of the uninsured would have been eligible for Medicaid if all states expanded this health insurance program. The rejection of Medicaid expansion by some states has reduced by more than 40 percent the number of HIV-positive people who are eligible for coverage under this program.
- The analysis doesn’t include the more than 700,000 estimated people with HIV who are undiagnosed or getting inadequate care for their illness.
The report notes: “The ACA represents an important opportunity to draw this high-need population into broader coverage and to address ongoing unmet needs for coverage and care."
The Kaiser numbers aren’t broken down by states, but data from the Missouri Department of Health and Senior Services offer some clues as to how many people could be affected by inadequate care in Missouri. Data from 2012 show that:
- 1,942 of males diagnosed with HIV, or 44 percent, have unmet medical needs.
- 1,350 of males with AIDS, or 26 percent, have unmet medical needs.
- 369 of women who are HIV-positive, or 37 percent, have unmet needs. So do 206 or 21 percent of women with AIDS.
Nancy Kelley, director of engagement and advocacy at Saint Louis Effort for AIDS, says Ryan White funding is key. Missouri and Illinois have received substantial help for their AIDS/HIV patients through this program. In the 2012 fiscal year, for example, Ryan White provided more than $29 million for HIV/AIDS programs in Missouri and more than $89 million for programs in Illinois.
“On the surface, it could appear that Ryan White would not be needed, or not at the same level, if people are getting their health care, their medications, through the Affordable Care Act,” Kelley says. “In some sense, there is some truth in that. But a couple of pieces of the Ryan White program do not appear in the Affordable Care Act.”
Case in point: case management
One of those pieces is the case management system. Case management helps patients navigate the health system; access their benefits; make medical appointments; get prescriptions filled; provide instruction on taking medications; and solve general problems for issues ranging from housing to transportation.
“People who have been around a while will tell you that this is the key to success of the Ryan White program,” she says.
Case managers are also helpful, she says, because not all providers under ACA pay for prescription drugs in the form that best suits a patient’s needs. She mentions the drug Atripla, an antiretroviral therapy that combines three medications into one. Even though Atripla is available, a provider might require a patient to use three separate drugs because the single dose medication might be more expensive. She says a complicated drug regimen could be a challenge for AIDS/HIV patients who are professionals and might forget to take their medications several times a day when traveling.
At the other end of the spectrum, she says, are “people with multiple challenges, living from couch to couch, in and out of shelters, leaving their medication somewhere or losing their back packs. The less times you have to remember (to take the medicine), the better.”
Robert Fruend, CEO of the St. Louis Regional Health Commission, says advocates for the needy have been working to keep Ryan White funding from being slashed. He says that the ball is now in Washington’s court, and that people are waiting to see what happens next. The public will get a glimpse in February when the next proposed federal budget is announced.
“Depending on what the funding level is, we could see a significant reduction in case management for people with AIDS,” Fruend says. While he hopes that doesn't happen, he says, “patients are very nervous that the federal funding will get cut,” and fear that “we’ll see a run on AIDS.”
Jennifer Kates of the Kaiser Foundation remains optimistic. “I don’t think people know what will happen,” she says. “Where people are left out, hopefully, Ryan White will be able to help them. But that’s going to be dependent on future funding.”