Barry, a 47-year-old from Fort Lauderdale, Fla., works as a D.J. to pay his mortgage. He has a three- bedroom, one-bathroom ranch that some might consider luxury living while others might call modest, but to him it is symbolic of what he has worked for in life.
Barry is also HIV-positive for the past 19 years. Through the AIDS Insurance Continuation Program (AICP) in his state, he said he is able to take his medication, cover his insurance premiums and keep a roof over his head.
However, with Florida's pending cuts for eligibility for the AIDS Drug Assistance Program (ADAP), Barry said he may soon have to decide if his house or health is more important to him. Making close to $40,000 a year, he currently earns 400% of the poverty level. Those currently at 400% and below are eligible for care; however the state is considering dropping that number to 200% and below.
"I have a full-time job, and enough money to have basic living expenses," he said. "But there is no way, if I had to pay insurance premiums and meds every month, that I could support my house. Either I have treatment, or I have a house. I can't have both."
Across the country, states are cutting funding and eligibility levels for AIDS and HIV patients, in order to scale back budgets that are already falling short. Waiting lists for treatment are increasing as a result, and some advocacy groups claim tax payers may ultimately foot the bill for those who are no longer eligible for treatment through increased infection and hospitalization.
According to reports, Florida is currently in the process of determining the cost of keeping all patients currently in the ADAP program enrolled, however the program is only funded at its current level through 2012.
Right now, Barry said he pays about $125 for medication monthly, and AICP covers an additional $475 in premiums for him.
Illinois has also recently changed its eligibility for ADAP clients, going from 500% of the federal poverty level down to 300%.
"Due to the current financial crisis in Illinois, the Illinois Department of Public Health had to make the tough decision to reduce eligibility for the AIDS Drug Assistance Program (ADAP) in order to contain costs and ensure long term sustainability of the program. The department will continue to do what it can to provide low-income and underinsured individuals living with HIV/AIDS the life-saving drugs and treatment they need," Melaney Arnold, spokesperson for the Illinois Department of Public Health, stated in an e-mail message.
Those clients between the 500% and 300% levels who are currently receiving medications through ADAP will continue to be eligible for the program, Arnold said. They must only reapply every six months for the program as all clients are required to do.
Arnold said currently U.S. Health Resources and Services Administration recommends eligibility be set at the national average level, which is between 300% and 325%.
"The Illinois Department of Public Health is committed to exercising all preventive measures prior to implementing a waitlist," she said. "The U.S. Health Resources and Services Administration dictated that a waitlist should be the final cost control measure implemented to preserve economic viability of the ADAP."
The Illinois Department of Public Health declined to be interviewed by phone.
Georgia also cut $100,000 of funding from its program, and Utah and Alabama also have waiting lists for those in need of treatment, according to ADAP.
Brandon Mascata, ADAP CEO, said although these cuts in many states may seem to be the fastest way to balance budgets, the decision is short-sighted. Eliminating a waiting list for patients in need may take away the "embarrassment" factor for states who lack proper funding, but the human cost will be high.
"This is penny-wise and pound-foolish," Mascata said. "Clearly states save money by restricting eligibility, but it will cost taxpayers money in the long run. Any short-term money that is saved will be spent many times over within a year, or two, or three, because people not being treated by these medications are more infective. They are more likely to try and access [emergency] hospital care."
Mascata said the average cost of ADAP annually per person is $11,000, and Medicaid cost is about 2.5 times that amount per person. If people are eliminated from ADAP benefits, they will likely apply for Medicaid, which will cost more in taxpayer dollars, he said.
"This program [ADAP] is a proven success in ROI for taxpayers. If people are HIV healthy, they will be more productive, contributing members of society," Mascata said. "If you understand the program its a no-brainer. This is the poster child for a government program that works."
AIDS ranked number 22 last year for public health concerns, he said. It is no longer a public health crisis to Americans, even though it is a real threat.
"People are more concerned with swine flu," Mascata said. "But no one in the U.S. has died from swine flu."
Murray Penner, deputy executive director for the National Alliance of State and Territorial AIDS Directors (NASTAD), said those patients who do lose coverage, and cannot be grandfathered into ADAP programs after eligibility changes are in place, can seek their treatment through pharmacy patient assistance programs. However, Penner said this option is not ideal, as it further complicates the process and places barriers between patients and treatment.
"You have to apply to each drug company separately, and go to various places to get medication that you could otherwise get in one place," he said. "It's a huge concern."
Lack of treatment means higher rates of transmission, Penner said.
"There is a cost to taxpayers, because of what we risk happening when we don't provide medications to them," he said. "We risk increased costs for ER visits. We need to think about lost productivity, increased risk of transmissionthere are critical ramifications."
Brian Garst, blogger for Conservative Compendium said the ADAP programs are an easier target for governments to cut from than other areas of contention, such as pension programs. Garst argues those receiving ADAP benefits arent as needy as some others receiving government aid.
"You're not really hitting the neediest," he said. "Someone like [Barry] may have to adjust their budget. I don't think it's unfair if they look and make cuts."
As for advocacy groups that claim taxpayers will be footing the bill for increased hospitalization, Garst said the argument is valid, but not likely.
"Drug companies are willing to provide their own programs and discount for needy individuals," he said. "There are alternatives out there."
Republican Strategist Brian Graham, co-owner of Florida-based Dixie Strategies, said the state has no choice but to balance its budget, and unfortunately cuts have to be made across the board.
"What I think is important is that they are still providing for not just those at the poverty level, but for those at 200% of the federal poverty level," Graham said. "It could even allow those who are the most needy to receive the drugs and get some of those people off the waiting list for treatment."
Someone like Barry, who is making 400% of the federal poverty level, should be able to cover their own treatment, he said.
"If you do get the people making $40,000 a year off the list, you will get the people who really, really, truly might not be able to afford this," he said. "The government is prioritizing the people who really, really need treatment. I don't believe those making 400% of the poverty level should be grandfathered inthey are taking from someone who truly might not be able to provide those medications for themselves."
Until further budget decisions are made in Florida, Barry remains in limbo.
"I have worked hard for this American dream everyone talks about," he said. "My dream is completely crushed."