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Southern states receive insufficient ADAP money
North Carolina, Alabama face crises
While the HIV epidemic has shifted toward poor, rural Southern areas, the funding mechanism behind the AIDS Drug Assistance Program (ADAP) favors the populated, urban states where the epidemic first erupted 25 years ago, southern AIDS advocates say.
Even in states where legislatures contribute a large portion of the ADAP budget, waiting lists and eligibility restrictions continue due to a lack of adequate funding. The results are people who need antiretroviral drugs, but who are unable to afford them and cannot qualify for ADAP or Medicaid.
Is U.S. in an inexcusable situation?
This is an inexcusable situation for a wealthy nation, AIDS advocates say.
"I believe people should have equal access to HIV medications," says Patrick Lee, JD, project director for the Piedmont HIV Integration Community Access System of the Piedmont HIV Health Care Consortium in Durham, NC.
"We’re in a country where that can happen," he says. "We don’t have to be a country of haves and have-nots."
The issue is a personal one for Lee: His own mother died from AIDS, and he is an HIV-positive, African American gay man, Lee says.
"My mother died of AIDS in 2000, and I have other family members who are affected by it," he adds.
The AIDS epidemic no longer is simply a medical issue since effective treatment has been created and is available; rather, it’s a social justice issue, says Peter Leone, MD, an associate professor in the department of medicine at the University of North Carolina in Chapel Hill.
"I have a hard time to think of any communicable disease for which we have effective therapy and where we don’t make that therapy available to everyone," he says.
"What complicates it more is this is an issue of transmission, and treatment will lower viral load, and we have reason to believe it will lower transmission rates," Leone notes.
Yet in Leone’s own state, there are more than 800 people on the ADAP waiting list and arguably hundreds, if not thousands, more people who need HIV treatment but are not receiving it.
"We have the lowest ADAP eligibility of any state in the Union, and so if anything, the problem is bigger than it appears here," he explains.
North Carolina’s ADAP eligibility is the lowest in the country with assistance only going to people who earn no more than 125% of the federal poverty level.
However, the program still has the nation’s largest waiting list for ADAP drugs, and there are more than 2,500 people enrolled in ADAP, says Steve Sherman, AIDS policy and ADAP coordinator for the Department of Health and Human services in Raleigh.
Reasons for this vary from the traditionally low income and rural nature of much of the state, the hard-hit local economies, possibly more efficient screening for HIV infection due to acute HIV infection research, in which Leone is involved, and other factors, he says.
The state has been moving from a textile, furniture manufacturing, and tobacco economy into a high-tech economy, Sherman notes.
"We’ve lost a lot of jobs in all of those industries, and a number of high-tech companies in the Research Triangle area have had significant layoffs of high-paying jobs," he says. "They say the economy is recovering, but the job sector doesn’t see it quite as readily."
However, the fact that North Carolina and other Southern states receive less federal money than their epidemics possibly warrant is another factor cited by AIDS advocates.
The Southern State AIDS/STD Directors Work Group, representing 15 southern states and areas, from the District of Columbia to Texas, has been lobbying for improvements in ADAP funding and in how ADAP money is distributed.
"We’re working with the federal government to get a larger appropriation for the South," Lee says.
Many Southern states receive less federal ADAP money when compared with their own state ADAP funding than do northern and western states.
For instance, North Carolina puts in more than one-third of its total ADAP funding, and Alabama puts in one-fourth of its ADAP funding, while California’s state share for ADAP is in the single digits, according to Lee and Kathie Hiers, chief executive officer of AIDS Alabama in Birmingham.
Waiting list in Alabama continues to grow
Partially due to this inequity, Alabama has an ADAP waiting list with more than 400 names, despite the fact that the state’s formulary only funds 31 drugs and the eligibility is at 250% of the federal poverty level, Hiers explains.
To make matters worse, Alabama is facing potential state cuts in ADAP funding that could result in hundreds more names added to the ADAP waiting list, she says.
"The way the funding distribution is set up is unfair — it’s unacceptable," Hiers points out. "We’ve been pushing hard on this issue because basically any state that doesn’t have a Title I city under the Ryan White Act doesn’t get their fair share."
The way the system was established, it distributes funding in a formula that considers the numbers of AIDS cases 10 years previously, and this formula doesn’t consider how rapidly the epidemic has shifted from an urban, gay, white male disease to a rural, poor, cultural, and ethnic minority disease, she says.
For instance, the formula considers all of Alabama rural state, needing less ADAP resources than states with Title I city environments, and this is despite the fact that Birmingham, is a metropolitan statistical area with more than 1 million people, Hiers adds.
"We have 46% of new infections, 40% of people living with HIV in the state, and we get 15% to 20% of the funding, and so there’s something dreadfully wrong with this picture," she continues. "And it’s no wonder why states like North Carolina and Alabama struggle the way they do."
Centers for Disease Control and Prevention (CDC) of Atlanta statistics show greater AIDS case rates in the South than elsewhere. The South also has a greater percentage of people living in poverty and a greater problem with HIV among rural, poor, and minority individuals, according to Southern States Manifesto, published March 2, 2003, by the Southern States group.
But the ADAP funding troubles in North Carolina, Alabama, and elsewhere in the South due to inequitable funding formulas shouldn’t overshadow the major issue that ADAP nationwide is underfunded, and there are people everywhere who need treatment but are unable to receive it because of a lack of private and public health care funding, Leone says.
"So we’re fighting over the scraps and argue about one state giving up resources from another state," he says.
However, the major issue that crosses state lines is that the HIV epidemic mainly affects people with whom society finds some discomfort, including people who acquired the disease through sexual activity and injection drug use, and so there is less sympathy for providing treatment to these groups, Leone notes.
"The only reason they don’t have access to care is because they’re poor, and that’s why I think it boils down to a social justice issue," he says.
Yet there’s another aspect of HIV treatment and care that transcends state lines, and that’s the public health issue, Leone adds.
Even if the public is unable to muster compassion for people living with HIV/AIDS, as they might for the child whose family solicits donations for an organ transplant, the public should be concerned about the epidemic spreading further into society at a great public cost, he says.
"Treatment is a prevention strategy," Leone says. "Access to care should lead to more HIV-positive people identified and treated, and it will reduce transmission substantially."