Esta página no está disponible en español.
The News & Observer
Our Fair Share?
6 February 2005
A confederacy of health leaders from 14 states published the "Southern States Manifesto" in 2003 with a mission not of secession but of greater inclusion.
The advocates came together to press for more federal money to fight HIV, which is ravaging the South as AIDS has moved from urban centers to more rural areas and, disproportionately, into minority communities. The old funding formulas, they say, are not accounting for the new face of AIDS, and it is time to change them.
In North Carolina, Hertford County, population 23,700, shows the trend: The tiny county on the Virginia line had the state's highest HIV infection rate in 2003.
This year, as Congress prepares to reauthorize the Ryan White CARE Act, which provides $2 billion annually for AIDS care and treatment, Southern states are poised to battle big cities, many in the Northeast and West, over how the money is allocated.
But the issue for Southern states runs deeper than dollars. The South grapples with rural poverty that makes health care spotty or difficult to access, with seemingly intractable racial disparities and with Bible Belt taboos against homosexuality, sex outside marriage and other behaviors linked to infection.
Fighting AIDS in North Carolina therefore requires a battle plan different from New York's or San Francisco's, health officials say.
"It's clear that the beginning epidemic was focused in major metropolitan areas, and it's also clear that a major portion of the epidemic is still there," said Steve Sherman of North Carolina's AIDS Drug Assistance Program, which draws half its budget from Ryan White funds. "But there is an increasing epidemic in rural areas, particularly in the South."
In North Carolina, one in four new cases of HIV arise in poor, rural counties. The state's population is 22 percent African-American, but blacks account for 71 percent of the state's AIDS caseload. Nearly a third of those infected are female. Heterosexual transmission is as common as homosexual transmission.
Add poverty to the mix and the costs to taxpayers are staggering: Last year, North Carolina spent $171.6 million in state and federal tax dollars directly on AIDS care and prevention. Even more money was spent through Medicare and private insurance. And then there were millions of dollars paid by Social Security in disability benefits and more millions paid for housing.
DRUGS COSTLY, THE WAIT LONG
For Rosa Munoz, an AIDS patient in Raleigh, the interventions are lifesavers. She would be on the streets and highly contagious if she didn't have local, state and federal assistance.
A 50-year-old grandmother from Puerto Rico, Munoz was diagnosed with HIV in 1993 after she followed her mother into a life of prostitution and drug use. She moved to Raleigh two years ago to be near her son and is now in supportive housing through a mental health program, is on disability, has Medicaid to pay for her health care, and is helped by her church.
"I got in my mind that I was never going to be good enough," she said. "I'm in counseling now, and I'm trying to learn how to live a better life."
Others have different struggles. Those who work low-paying jobs without health insurance often can't afford costly AIDS drugs. The state's AIDS Drug Assistance Program helps them, but only if they make less than $11,600 a year. Last year, the drug program got $11 million in state funding and $14.3 million from the Ryan White act. But it's routinely over-booked, with waiting lists that span months.
Guy Jenkins, who was diagnosed with HIV in 1999, had to wait almost a year to get medication through the program. At the time, he was a student and had no health insurance. The drugs would have cost him $2,000 a month.
"I couldn't afford to be on medication," he said.
Such delays in treatment worry public health officials. Patients with untreated AIDS are highly contagious, so getting and keeping people on drug regimens is a crucial step in fighting the spread of disease. Sherman said he is concerned that the drug assistance program will not be adequately funded. Two issues lurk.
Last summer, President Bush made a special $20 million allocation to drug programs around the country to clear their waiting lists. North Carolina got the largest chunk of money because it had the longest line: about 800 people. But patients must stay on drug therapy for the rest of their lives, and continued money for the most recent patients isn't in the budget Congress approved last fall, Sherman said.
If federal money isn't found, the state will have to come up with it or stop paying for the drugs. That would push a lot of people off their meds, creating a huge public health risk.
The second issue is more contentious, pitting Southern states against big cities in a fight over a dwindling pool of money for AIDS treatment. The battle involves the complicated formula for distributing Ryan White dollars -- specifically, $615 million that 51 cities got last year, based on their size and case load, to treat AIDS.
Most Southern states, including North Carolina, have never had cities that qualify for the money, even though the South is thought to have the greatest number of people living with AIDS, according to the Henry J. Kaiser Family Foundation.
"We have more cases of AIDS in North Carolina than any other state not eligible" for the allotment to large cities, said Congressman David Price, a Chapel Hill Democrat who has made AIDS funding a priority this year. "It's out of whack."
According to the Southern States Manifesto, federal funding shortchanges the South by paying about $5,184 per HIV patient, compared with $5,625 per patient nationwide.
Lobbying is already under way to change the Ryan White funding formula. A spokesman for U.S. Sen. Richard Burr said advocacy groups have been calling to argue for changes; the North Carolina freshman is on the committee that will craft changes to the Ryan White act.
"The funding formula is something that's a concern of his," said Burr's spokesman, Doug Heye. "Not only has the South been shortchanged, but certainly North Carolina has been, and North Carolina urban areas. That's something he'd like to change."
Opposition will be fierce. Lawmakers in states such as New York, New Jersey, Missouri and California -- which all have more than one city getting aid -- fought hard against changes when the act was revised five years ago. Although President Bush called for reauthorization of the act in his State of the Union Address on Wednesday, few expect more money amid mounting budget pressures.
SHORTCHANGED ON PREVENTION
In many regards, the battle over treatment dollars stems from a failure of prevention because too few people have either heard, or heeded, messages to curb behaviors leading to HIV infection.
Munoz said she continued to work as a prostitute after she was diagnosed, taking irresponsible risks because her own despair made her reckless with the lives of others.
"I was put in a [psychiatric] ward because I was going crazy," she said. "I didn't know how to stop. Disease and addiction, mixed together, I didn't know how to function."
A prison counselor in Texas eventually got her attention, she said, and she has spent the past two years working to build a stable life in Raleigh that has eluded her elsewhere.
Getting people such as Munoz to change their behavior keeps the virus from spreading, but advocates say the real challenge is to make sure that no one gets HIV in the first place.
North Carolina spends $4 million from the Centers for Disease Control and Prevention to mount prevention programs. But advocates argue that Southern states are getting short shrift in prevention funds as well. According to the manifesto, the national average allocated for prevention was $1,766 per AIDS case; for Southern states, it was $1,579.
In North Carolina, local prevention efforts are aimed at gays, women seeking treatment in public clinics, substance abusers, people in prisons, teens. One program targets black men who seem to be popular at gay bars, enlisting them to encourage friends to use condoms.
COLLEGE TREND TROUBLING
Evelyn Foust, who heads North Carolina's HIV prevention branch, said the state's message has never changed: "Use a condom with all your partners all the time. Do not assume the other person knows their [HIV] status."
But too many people mistakenly believe they're immune if they're not gay or injecting drugs. After declining through the mid-1990s, the number of HIV cases has climbed the past three years in North Carolina. Foust said she is concerned that young people, especially, have grown cavalier about the disease since medications have cut death rates.
One of the most troubling trends is an outbreak of HIV infections among African-American men in college. Dr. Peter Leone, who studies infectious diseases at UNC-Chapel Hill and is medical director of the state's HIV prevention and care branch, led a team of researchers who discovered the outbreak.
At least 103 college men on 37 North Carolina campuses have been identified as having recent HIV infections. Most of the men have engaged in sex with other men, often in secret liaisons arranged over the Internet, and many also had affairs with women.
"Very few of these men are open about their behavior," Leone said. "What we can assess is there's a huge issue around homophobia, stigma and fear."
The stigma is deep-seated in Southern Bible Belt culture. The Rev. Enoch E. Holloway, pastor of Friendship Chapel Baptist Church in Wake Forest, said he is dismayed at the lack of commitment from black churches to minister to people in need.
"Initially when the disease was classified as a gay man's disease, there was as much of a backlash from the church as compassion," he said. "Many considered it ... a plague from God against the immorality of man. Of course, it's been proven out that AIDS is simply a disease, and as any disease, it's not from God, but something that comes on man that man has to deal with."
Holloway, whose church runs an AIDS mission in conjunction with Alliance of AIDS Services-Carolina, said the fight against AIDS is a fight against ignorance.
"Providing compassion for people is perfectly in line with the will of God," he said. "Jesus himself said He came for those who needed a physician and not for those who are well. And if anybody needs a physician, it's those living with HIV."
WHO GETS THE MONEY?
The formula that the federal government uses to allocate some money from the Ryan White CARE Act was crafted in 1990 to help big cities hit hard by the AIDS epidemic. States such as North Carolina don't have cities large enough to qualify for that pool of money, though North Carolina does get $22 million in other Ryan White money for its 25,000 AIDS patients. As the disease has hit more rural states, particularly in the South, advocates are pushing for a different funding scheme. Here are some metro areas that qualified for the special money in 2004.
Metro Amount Total AIDS area (in millions) cases (2003)
Atlanta $18.3 19,369
Baltimore $19.7 18,047
Boston $14.8 16,290
Chicago $25.4 26,057
Los Angeles $36.6 47,379
Miami $25.5 27,525
New York City $122.1 137,178
San Francisco $29.8 29,655
San Juan, P.R. $14.7 17,744
Washington, D.C. $27.0 28,400
U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES AND AVERT.ORG