The NewStandard ceased publishing on April 27, 2007.

AIDS Patient Advocates Seek More Money Under Expired Act*

Rural Epidemic Exacerbates Funding ‘Inequitiesâ€TM

by Tara Tidwell Cullen

With the legislation that provides funding to low-income HIV/AIDS patients up for renewal, caregivers say the 15-year-old law is ill-equipped to deal with face of today’s epidemic.

*A correction was appended to this news article after initial publication.

Feb. 28, 2006 – Around 400 people with AIDS or HIV are on a waiting list for state aid in Alabama where the average income for a person with AIDS is $7,950 per year. Meanwhile, AIDS Alabama caseworkers spend most of their time keeping clients from being thrown out on the street or trying to scrounge up free medications.

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"I often call it crisis management rather than case management," said Kathie Hiers, head of AIDS Alabama, describing the difficulties her organization faces in dealing with the state’s growing population of rural HIV/AIDS patients.

The HIV/AIDS epidemic, considered an urban problem when the primary legislation for addressing it was passed, has spilled into small towns and isolated, mostly poverty-stricken, rural areas. According to the Centers for Disease Control (CDC), the number of AIDS cases in Southern states increased by 25 percent just between 2000 and 2004.

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which fills gaps in health care for HIV and AIDS patients whose needs are not met by insurance or Medicaid, expired on September 30, 2005 after fifteen years as law. In addition to providing access to medical care and prescription drugs, it funds the transportation, food and housing programs that have become increasingly necessary as advances in HIV treatment help patients live longer.

Draft legislation for reauthorization of the CARE Act is slated to emerge in March, and advocates for Southern AIDS/HIV patients hope it will be amended to address the epidemic in their region.

Absent a funding increase, advocates are forced to fight for as much money as possible out of a dwindling pool. Natural allies find themselves butting heads.

The spread of the HIVAIDS epidemic to rural areas has not taken any pressure off of cities, where the Communities Advocating Emergency AIDS Relief Coalition says more than 70 percent of patients still live.

About 40,000 new HIV cases are reported nationwide every year, according to the CDC. The majority of those new cases are people of color -- 48 percent of HIV/AIDS patients in 2004 were black, seventeen percent were Hispanic. Throughout the nation, healthcare workers and advocates are struggling with growing numbers of patients desperate for access to medicine and other services.

Those patients largely rely on CARE Act programs, but funding for the CARE Act has remained at about $2 billion for the past five years, and could stay flat for another year if Congress settles for the approximately $2.16 billion request in President Bush’s fiscal year 2007 budget proposal.

The AIDS Budget and Appropriations Coalition, an advocacy group focusing on the federal budget, says that’s not enough. The group says the act needs nearly $2.8 billion to be effective. And the Southern AIDS Coalition has called for at least $95 million to be put toward achieving parity between urban and rural areas.

Absent a funding increase, advocates are forced to fight for as much money as possible out of a dwindling pool. Natural allies find themselves butting heads.

HIV/AIDS care providers, no matter where they live, face a common challenge as the CARE Act reauthorization approaches: how to treat the epidemic with fewer resources.

"It’s just overwhelming. I don’t want to take money away from anyone else, but I wouldn’t be much of an advocate for the people here with HIV if I weren’t making these statements," said Hiers, who is herself also a member of the Southern AIDS Coalition. Hiers considers the CARE Act funding formula unfair and wants increased spending on rural HIV/AIDS patients – even if it means shifting money from urban areas.

Paul Feldman, with the National Association of People with AIDS, said the funding shortage and resulting competition is intentional. "I do think this is a tactic… to create a battlefield and pit us against each other, rather than letting us all unite to demand increased funding that we all deserve," he told The NewStandard.

The debate over the equity of the CARE Act revolves mainly around the bill’s funding formula. Some provisions of the Act give extra funding to big cities with relatively high numbers of AIDS cases. This means that mostly rural states receive less CARE Act money per person than states with major metropolitan areas. The Southern AIDS Coalition reported that AIDS patients in 30 states receive less per person than their counterparts in the 20 states with the bigger cities.

Last June, the Government Accountability Office, Congress’s research arm, criticized this funding formula. The report compared 2004 funding for Connecticut and South Carolina, which had 5,363 and 5,563 AIDS cases respectively.

Because Connecticut had two large eligible cities that accounted for 91.3 percent of its cases, those patients were counted for funding twice. Therefore, the state received $1,275 more per AIDS case than South Carolina, even though South Carolina had 200 more cases.

Even the staunchest advocates on either the urban or rural side of the debate agree that shifting money between these regions would be no more than a band-aid for a woefully under-funded system.

"If you take money from New York and put it into Alabama, that means that a person in New York now is not getting the care they need," said Damon Dozier, director of governmental relations and policy for the National Minority AIDS Council. "And Alabama would not either, because the care they need is so much more."

The Bush administration released its proposals for the Ryan White CARE Act reauthorization in July. Bush calls for an end to the double counting of cases in metropolitan areas and for 75 percent of CARE Act to be spent on "core medical services," described only as "the basic, primary medical care and medication needs of individuals with HIV/AIDS." There is little detail about what constitutes these services.

After funding shortages forced the Alabama Department of Public Health to make budget cuts last year, it slashed transportation, food and heating-assistance funds for HIV/AIDS patients. According to Heirs, nearly 100 patients wrote letters complaining to the state AIDS services director.

"All of a sudden our patients couldn’t get to their appointments," Hiers said. "People live three-and-a-half hours away [from the nearest medical care] and don’t have cars. We can have the best medical care in the world, but if we can’t get them there, then it’s no good."

The director of Alabama’s HIV/AID program reinstated the transportation program, but could not afford to reopen the food and heating programs.

One CARE Act funding increase included in Bush’s 2007 budget was $70 million to help reduce AIDS Drug Assistance Program waiting lists. But Hiers said that even this proposal is inadequate, raising concern that it will act as a tranquilizer against action for more serious federal support.

Meanwhile, looming Medicaid cuts threaten to increase pressure on the CARE Act. Medicaid is currently the primary healthcare resource for people with HIV and AIDS, providing more than $5.6 billion in healthcare services annually. In February, Congress passed a budget resolution that will cut Medicaid by $4.8 billion over the next five years.

With these numbers, HIV/AIDS care providers, no matter where they live, face a common challenge as the CARE Act reauthorization approaches: how to treat the epidemic with fewer resources.

"When we have [draft] legislation to work with, I’m hoping we’ll be able to sit around the proverbial table and find ways to address our different issues from our different perspectives and not hurt people," Pickett said. "These people live in our big cities and in small towns in the middle of nowhere and everywhere in between. We have to find ways to serve all these people in the best way we can."


Minor Change:

The lead of this article initially implied that the average income of people on Alabama's waiting list for HIV/AIDS medication was nearly $8,000. That income is instead the average for people in Alabama with HIV/AIDS. This error was introduced by the editors.

 | Change Posted March 2, 2006 at 01:03 AM EST

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The NewStandard ceased publishing on April 27, 2007.

This News Article originally appeared in the February 28, 2006 edition of The NewStandard.
Tara Tidwell Cullen is a contributing journalist.

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