If you’re worried that poor and uninsured people living with HIV won’t be able to access life-sustaining medication in the midst of the economic downturn, don’t be, the federal government says, no one who has requested aid will go without.
Deborah Parham Hopson, Ph.D., who oversees the Ryan White Program--the largest HIV-specific federal grant program in the United States--says the government’s recent $25 million boost to the grant’s cash-strapped AIDS Drug Assistance Program (ADAP) is helping to curb a growing care crisis for people infected by HIV. ADAP provides free antiretroviral medication to Americans who can’t afford the average of $12,000 per year required for medication alone. As of last week there were between 1700-1800 people on ADAP waiting lists nationwide--an historic high.
“The money will cover the medication for many of those people for one year,” says Dr. Parham Hobson, associate administrator for HIV/AIDS in the U.S. Department of Health and Human Services' Health Resources and Services Administration. “And for the next fiscal year, President Obama has [requested a budget of] $835 million--$20 million more than this fiscal year--to help meet their needs.”
Dr. Parham Hobson also points out that those who are not receiving federal help are getting state assistance. But the New York Times criticized the feds recently for leaving the problem to the states, many of which can't keep up with the demands of its established patients--let alone the recently diagnosed--on its ADAP rosters. They claim that heavy unemployment rolls and other recession-related hardships have made it nearly impossible, particularly since it wouldn’t be a short-term fix: ADAP funds are usually necessary for the duration of that person’s lifetime. At least 11 states have already closed enrollment in the federal program, including Florida, which has the nation’s third-largest population of people living with HIV. Other states like Louisiana have stopped accepting applications for its list, and last month and Arkansas and Utah dropped people from its programs altogether.
While Julie Scofield, executive director of the National Alliance of State and Territorial AIDS Directors, credits the Obama Administration for its recent cash infusion, she says the money won't last long--perhaps not even through the rest of this year. “We’re grateful for the help but it’s a drop in the bucket compared to what’s needed. What happens when it runs out and the states can’t pay? The federal government has to do its part.”
Right now when the federal and state governments haven’t paid, the nation’s drug companies have stepped in to fill the void, with companies like Bristol Myers negotiating discount prices with states as well as providing free drugs. But some states--feeling constituent heat and not wanting to be looked upon as welfare recipients--have opted to shuffle its meager funds around to take care of its population’s most vulnerable.
This may be one of the reasons why last week North Carolina's waiting list plunged from a whopping 700 people to 200 in just seven days. That only happened, says Scofield, because residents refused to take the budget cuts lying down.
“The people of North Carolina mobilized around this issue in order to get state funds re-allocated,” says Scofield of the scores of people who rallied to get funds reinstated to the program. “It only happened because they put pressure on the state. But they’re going to have to keep applying that kind of pressure.”
Scofield also points out that the feds don't actually know the full number of people that need to be enrolled in an ADAP program because some of the recently diagnosed or unemployed aren’t coming forward for fear they won’t be able to get help anyway.
Montana resident Julian Ricci--who has been on his state’s ADAP list since September--calls the situation "an embarrassment."
"They need to burn this system down and start over," he says angrily. "It doesn’t work!" Ricci, who is unemployed and uninsured, says he qualifies for assistance, but has no idea when--or if--he'll ever be placed on Medicaid. In the meantime, the former technology-company owner says Bristol Myers is supplying his meds, but he’s limited to which ones he qualifies for and the ones he’s taking now have caused serious disorientation and severe paranoia. “I’m literally appalled by our government,” he continues. “Embarrassed and ashamed by both parties. They should all be ashamed of themselves for allowing this system to get to where it is. It’s out of control. And there’s nothing I can do about it.”