After living with HIV for more than two decades, Henry Dendy knows the nuances of every program designed to combat the virus. He can explain, at length, how to get help -- and how people, including his friends, can and have fallen through holes in the safety net meant to help.
So he takes with some skepticism this year's proposals that could give North Carolina and other Southern states more federal money to fight HIV and AIDS. These changes would come as part of the reauthorization of the Ryan White CARE Act, which, with nearly $2.1 billion disbursed this year, is the single largest piece of federal AIDS spending.
The House of Representatives recently approved changes to the Act, but a bill in the Senate was stalled by a handful of Democrats whose states -- New York, New Jersey and California -- stand to lose money. Nevertheless, the issue is expected to reemerge when Congress resumes session.
Lost in the din over which state gets what, says Dendy, is how that money gets people through the maze of programs, funds and caregivers needed to handle the virus. "There are needs that will not be addressed," says Dendy, a 48-year-old Charlotte HIV activist and educator. "I don't see [the] Ryan White [Act] as a complete fix. There's inconsistencies, and if you don't know how to operate within the system, you're going to get lost."
Still, for a state and region that has clamored for more funds for years, changes to the Ryan White Act -- even if not yet actualized -- are good news to him and other local advocates, most of whom are more sanguine. "This would really mean a lot for the clients in this area," says Eloise Hicks, executive director of the Regional HIV/AIDS Consortium. "Hallelujah."
Hicks says healthcare needs have "grown exponentially" as more Charlotte-area people have tested positive for HIV, the virus that causes AIDS. Last year, 327 new HIV cases were reported to the Mecklenburg County Health Department. While down from the 2003 high of 437 new cases, it's 50 percent more than the 218 reported in 2000. By 2003, complications from the virus became the second leading cause of death in the county for people ages 25 to 44, according to the health department.
North Carolina has about 18,900 people living with HIV or AIDS. In 2004, 66.7 percent of people with AIDS in the state were African-American. The county and state figures reflect what's become a widespread truth in the South: new HIV infections are cropping up here at higher rates than other regions. According to the drug company Pfizer, 46 percent of all new HIV cases occur in the South while only 40 percent of people with AIDS live here.
Such statistics, among other concerns, led the Government Accountability Office to conclude in April that the Ryan White Act needed changes if money is to be distributed fairly. The Act, named after an Indiana boy who became a poster child for AIDS after contracting HIV from a blood transfusion, was enacted by Congress in 1990. Many people infected with HIV are in a perilous situation: Care for the virus and the disease it causes is expensive, with the potential to bankrupt even those with insurance. So many turn to public help like Medicaid or Ryan White Act funds. Used by more than 500,000 people, Ryan White pays for healthcare not covered by other sources.
More than 15 years after its inception, the Act's formulas seem to favor major metropolitan areas like San Francisco and New York -- cities where the epidemic first showed -- at the expense of rural areas and cities in the Midwest and South. Legislators, including Sen. Richard Burr, a North Carolina Republican, recently complained about the disparity. "Here in the South, people have been going without your very basic treatment because the resources have not been coming our way," says the Rev. Deborah Warren, president and CEO of the Regional AIDS Interfaith Network.
Though changes to the Act are still uncertain, more money has already been funneled to North Carolina in recent years for HIV and AIDS treatment. The Charlotte area in particular has seen more funding as its HIV-infected population grows, Hicks says. And the General Assembly this year made changes that allow people to make more and still qualify for federal AIDS Drug Assistance Program funds that the state administers. Before, people couldn't make more than $12,000 and qualify for ADAP. Starting Nov. 1, clients can make up to twice the federal poverty level, said Steve Sherman, the state's AIDS policy and ADAP coordinator.
Dendy receives Medicare because he has a back disability, so he won't directly see the fruits of any increased Ryan White Act funding. But he's used it before when he had what may have been pneumonia and when the HIV drugs he was taking caused debilitating depression. Today, his viral load is undetectable. "But it's all confusing. It really is," Dendy says. "And you have to know the system."