HIV poses challenges for Southern states
Most people with AIDS in South are minorities
When discussions turn to HIV/AIDS, most people assume the U.S. epidemic is primarily a northeastern and western coast problem, where most of the AIDS activism and media attention are focused.
Statistics paint a different picture, one that greatly affects the availability of resources and health care services for HIV patients: The southern United States has the greatest estimated AIDS prevalence and incidence, and it’s where the epidemic is increasing at the fastest rate.
"The problem in the South is the one that seems to be increasing, and the South has been the hardest hit by the epidemic," says Jennifer Cates, senior program officer of HIV/AIDS policy for the Kaiser Family Foundation in Washington, DC. The Henry J. Kaiser Family Foundation recently published reports about HIV/AIDS and sexually transmitted diseases (STDs) in the southern states and co-sponsored a conference, titled "Southern States Summit on HIV/AIDS & STDs," held in November 2002 in Charlotte, NC. The Southern State AIDS Directors Work Group and National Alliance of State and Territorial AIDS Directors (NASTAD) of Washington, DC, were the conference’s other sponsors.
"In the South, African-Americans have been disproportionately affected," Cates says. "African-Americans are 19% of the population but were over half of the people living with AIDS at the end of 1999."
Of the estimated 39,910 people estimated to have AIDS in the United States in 2001, an estimated 18,364 reside in the South. (See chart on AIDS incidence.)
Even more alarming is the fact that the South’s proportion of estimated AIDS cases has increased between 1993 and 2001, in the same period that other regions have seen decreases in their AIDS prevalence and incidence.
|
Estimated
AIDS Prevalence, Incidence,
and Population by Region, 2001 |
|||
|
Region
|
Population
(2001)
|
Estimated
Proportion Living with AIDS/Prevalence (2001)
|
Estimated
Number New AIDS Cases/Incidence (2001)
|
|
United
States
|
100%
|
100%
|
100%
|
|
South
|
36%
|
40%
|
46%
|
|
Northeast
|
19%
|
30%
|
28%
|
|
West
|
23%
|
19%
|
16%
|
|
Midwest
|
23%
|
10%
|
10%
|
|
Sources: Centers for Disease Control and Prevention, HIV/AIDS Surveillance Report, Vol. 13, No. 2, 2002; US Bureau of the Census, Time Series of State Population Estimates, 2002 |
|||
As the epidemic shifts south, one of the key issues is whether the nation’s traditionally poorer states can handle the burden of a very costly and resource-intensive epidemic.
Some of the significant challenges in the South are the lack of health care infrastructure in certain areas and the epidemic’s more rural nature, affecting impoverished people who may lack access to transportation and adequate health care, says Julie Scofield, executive director of NASTAD.
The recent summit was convened at the request of southern officials who wanted to share information about the shared problem of supporting comprehensive HIV treatment programs, Scofield says.
"We brought together both health department and HIV and STD officials, community folks from across the South, representatives of major federal agencies that fund HIV programs, key academic researchers, and state legislators," Scofield says. "We spent a couple of days together talking about data and unique barriers and what problems folks face in the South in accessing care."
While southern states are not uniformly similar in the scope of the HIV epidemic and their abilities to handle it, there is a common theme related to state HIV funding and health care infrastructure.
For example, the state of North Carolina has one of the nation’s most serious state budget crises, which has resulted in the state’s AIDS Drug Assistance Program (ADAP) being closed to new enrollees in the summer of 2002, says Evelyn Foust, MPH, CPM, North Carolina HIV/STD Director in the Division of Epidemiology at the state’s Department of Health and Human Services in Raleigh.
"That program provides life-sustaining medications to people who don’t have insurance and who don’t qualify for Medicaid," Foust says. "And that was a heart-breaking and extremely disturbing set of circumstances, for us to turn away people who deserve to have access to drugs that will keep them healthier and keep them alive."
While Alabama, Kentucky, and Texas also had ADAP waiting lists in October 2002, North Carolina’s list was the longest, and it represented a high number of indigent people living with HIV/ AIDS. North Carolina’s ADAP has an income eligibility that is among the lowest in the nation: To qualify for the program, a person’s income must be no more than 125% of the federal poverty level.
Nationwide, the income eligibility criteria range up to 500% of the federal poverty level, and up to 400% in the South (in Mississippi and Maryland).
North Carolina’s ADAP waiting list grew to 800 people until October 2002, when the state was able to piece together supplemental funding from federal and state sources, taking 680 people off the waiting list, Foust says.
However, anyone who became eligible for ADAP medication in North Carolina after Oct. 4, 2002, had to be added to the waiting list, Foust adds.
"We’re not clear about what the funding will look like next year," Foust says. "We want to make certain people have ongoing access to medications, but the budget crisis will continue to challenge us."
Epidemic’s increase outstrips resources
North Carolina provides 40% of the state’s ADAP funds, treating people affected by an epidemic that is growing more rapidly than the state’s infrastructure can handle. As of 2001, North Carolina ranked 15th nationwide in the prevalence of persons living with AIDS, and it ranked 11th nationwide in the number of new AIDS cases/incidence.
"I should think we are symptomatic of the problem in the South," Foust says. "We’re representative of the crisis in the South in terms of the escalating HIV/AIDS cases and not having enough resources to meet all of those needs."
Southern states also have the nation’s greatest disproportionate share of African-Americans among their HIV/AIDS cases. Nationwide, African-Americans with HIV/AIDS as a percentage of prevalence accounted for 42% of the epidemic, according to 1999 data; in the South, that percentage was 53%.
"From what I see, African-American men who have sex with men [MSM] are at the epicenter of the HIV epidemic and the black communities across the South," says Don Sneed, executive director of Renaissance III in Dallas, the state’s first community center for young African-American MSM.
"As you move out from the epicenter, then you find other populations that are being infected," Sneed says.
Sneed, who spoke at the southern summit about mobilizing communities, says one of the first realities that needs to be addressed in focusing prevention efforts on African-American MSM is that there is no African-American gay community. Unlike white gay communities, African-American MSM are not cohesive and connected and active politically, Sneed says.
"One thing I told people attending the southern summit is that they are trying to mobilize something that doesn’t exist," Sneed says.
"In the white MSM community you see businesses, newspapers, social and political organizations, people who are vested and open with their sexuality, people who hold key positions in private organizations and public institutions, and so forth," he explains. "There tend to be sections of certain cities that are designated as the white gay area, so you have a viable community as such, and you don’t have that in the African-American gay MSM community."
Sneed suggests that any HIV prevention community mobilization in the South must be done simultaneously with community building. It’s this type of groundbreaking work that Renaissance III has done.
Another issue that concerns southern HIV/ AIDS officials is the level of stigma and discrimination that continue to exist and hamper efforts to provide effective HIV testing, counseling, and treatment.
"We have an ongoing epidemic of fear associated with the illness," Foust says. "People are concerned about issues like whether they can get AIDS by hugging someone or using the same utensils."
For instance, one anecdote Foust has heard concerns a North Carolina family that makes the family member infected with HIV use plastic plates and plastic forks.
"We encounter people every day who get a new diagnosis of HIV infection and who are asked to leave their family home or their church, or who are told they can’t just come around anymore," Foust says.
"Stigma and discrimination occur in every place in the country, but I do think the South is particularly challenged in overcoming some of those obstacles," Foust adds. "And I think the way we need to do that is to educate people about how the virus is transmitted and how it’s not."
Of course, providing such prevention and public education messages requires funding, and this, again, is where the South has barriers to reaching all of the populations that need these messages, Foust says.
While some states provide HIV education in public schools, which is a cost-effective way to reach a general populace with prevention messages, this is not as common a strategy in the South, Scofield says.
Finally, the rural nature of the southern HIV epidemic makes it difficult to match HIV-infected and at-risk people with existing prevention and treatment programs.
Foust recalls the early days of the AIDS epidemic, dating back to 1984, when there were almost no AIDS service organizations available, and clinical trials for HIV medications were in their infancy.
"Now we have a wide range of HIV care and services organizations and a number of high-quality clinics for HIV, so we’ve come a long way," Foust notes. "But in rural places, where it’s a long distance from where someone lives to a provider or physician providing HIV care, transportation is a big obstacle." Taxicabs and buses are usually either limited or unavailable, so if rural HIV patients don’t have their own cars, then there may be no way for them to reach the HIV clinic and return home again, Foust adds.
North Carolina employs public health specialists who work with HIV providers, delivering information to HIV patients and providing transportation to physicians when it’s feasible, Foust says.
"We have staff who spend all day taking one client to a doctor," Foust says. "Their average monthly mileage is over 1,300 miles a month from interacting with HIV patients and providing transportation."
Even finding a primary care physician can be a challenge in rural areas, particularly when patients do not have private insurance. Often, the only place such patients receive medical care is at the local health department or in an emergency room.
All of these challenges can only be solved by cooperation among state legislatures, funding sources, and federal partners, Foust says.
"There’s much more our own states can do, and much more can be done at the community level," Foust says. "We have to own up to our responsibility, and we can’t expect someone else to fix the problem for us, but at the same time we need help."
When discussions turn to HIV/AIDS, most people assume the U.S. epidemic is primarily a northeastern and western coast problem, where most of the AIDS activism and media attention are focused. Statistics paint a different picture, one that greatly affects the availability of resources and health care services for HIV patients.
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