The latest round of state budget cuts literally is a matter of life and death to some of the people affected.
More than 5,000 people use the Ohio HIV Drug Assistance Program (ODAP) to get expensive life-saving medications that treat HIV. Recent government belt-tightening, however, has led to a first-time waiting list and other major cost containment measures for the 20-year-old program.
Administered by the Ohio Department of Health, ODAP provides free medications to HIV-positive state residents without insurance and who can’t afford them. Also, the program covers co-pays or premiums for people with insurance if they meet certain income guidelines.
The Department of Health began the cost-cutting measures July 1, just as there’s been a huge leap in demand for the service. Program administrators say the recession is to blame for the increase, but insist the cuts — which include removing some people from the program — are needed to keep it viable.
ODAP is a “payer of last resort” for those who have exhausted other options. But hundreds of Ohioans, including some in Cincinnati, are finding out what happens when the supposed last resort is no longer available.
There are about 525 people from Hamilton County in the program, according to state officials.
Mark Hayden, who lives in Over-the-Rhine, is one of them. Hayden, 49, has a full-time job at local nonprofit organization. He currently has insurance but credits the program with keeping him healthy enough to work and earn a bachelor’s degree; he’s currently studying for a master’s in social work.
Hayden is trying to figure out if he’ll have to pay several hundred dollars a month for his medication — or perhaps stop taking some meds — because he might be too healthy to qualify under new state guidelines.
Commonly used HIV-treatment medications can range from $350 to more than $2,300 per month.
“This ADAP program has allowed me to go to work, pay taxes and go to school,” Hayden says. “I also am involved in the community, as member of the OTR Community Council, all because I have been given access to this medication. If you don’t have access to this medication, you will get sick and you will die.”
The Ohio Department of Health says changes were needed to shore up its $35 million budget.
Although the number of people enrolled in the program has skyrocketed — from about 1,900 in 2005 to nearly 4,400 in 2009 — it’s been funded at the same level since 2007.
Starting late last year, the program began enrolling 100 people a month, and officials were projecting a $16.4 million deficit by the end of this fiscal year.
After several months of examining different options for cutting costs, state officials settled on decreasing the number of people ODAP serves.
“This is a national problem, not just an Ohio problem,” says Jay Carey, the program’s management analyst. “If you look across the country you’ll see a lot of states are doing similar things.
“Our demand is increasing dramatically,” he adds. “When we realized that demand was outpacing our resources last year, we started taking minor (cost-cutting) measures. This year we really started seeing the scope of problem, and we either needed to increase resources or decrease costs.”
Statewide, 300 people were notified that they were being dropped from the program immediately after the department changed income eligibility guidelines from 500 percent of the federal poverty level and below (about $54,000 for a single person) to 301 percent (about $32,000).
Another 500 people who meet the new income guidelines, like Hayden, might still be removed under new health guidelines that Carey said are designed to cover Ohioans most at-risk of getting sick. These health guidelines center on CD4 levels in an infected person’s blood. CD4 cells, also known as T-cells, are the cells that fight off germs and bacteria in the body. Those with HIV or AIDS with lower CD4 counts have a higher risk of complications of HIV-related infections.
New state guidelines say those with a CD4 count of 500 that has never been below 200 (the level that triggers an AIDS diagnosis) will be removed from the list.
Additionally, for the first time there is a waiting list to enroll. As of press time, 49 people were on that list. There are also changes in what drugs the program will help pay for or purchase.
People who have been told they no longer qualify have 30 days to prove their health or financial circumstances have changed and they should remain in the program. Otherwise, they stop receiving assistance Aug. 1.
Although there are other ways people can get help with medication, such as drug company programs, free samples from doctors or other local community based programs, time is of the essence for people who live with HIV. Any lapse in medication could be fatal and patients can develop a resistance to drugs if they stop taking them, even for a short time.
For instance, Hayden said his doctors have told him he shouldn’t stop taking his medication, or his health could quickly deteriorate.
“I’ve been on medication over 20 years, and the reason this is so upsetting is once you start this medication you can’t stop taking it,” he says. “I’ve followed my doctors’ orders. Now if I stop, my HIV virus will become resistant. I won’t be able to take the drugs again. This is very scary. If your access to care is delayed, it’s just the same as being denied.”
As of press time, Hayden was unsure if he would remain in the program and his enrollment status was being reviewed. He knows others who had been dropped.
“Some of them have stopped taking their medicine; some are asking their doctors for medicine,” Hayden says. “All of them have applied to pharmaceutical companies. But you go the doctor and he says, ‘Don’t even miss one day and good luck with that.’ ”
State health officials are sensitive to the plight of Ohioans who’ve dropped, Carey says, and are working to direct them to other resources. Among those are the statewide network of HIV case managers. Locally, people who have been removed or on the waiting list should contact Stop AIDS Cincinnati, Caracole or the Cincinnati Health Network. (See box.)
The Department of Health has applied for federal grants that could help bolster its budget, but that isn’t a long-term fix.
When asked if these measures would be in place for the foreseeable future, Carey replies, “There is work on a national level to get more funding for these programs, but there are a lot of factors at work. We can’t predict when we can return to the days of when we can care for more people. It’s unfortunate, but that’s the lay of the land at this time.”
Until then, Hayden — and hundreds more like him — are frustrated, scared and unsure what the future will bring.