August 28, 2003 THE CHARLESTON GAZETTE – Charleston, West Virginia

Funding cuts hurt AIDS program - Patients dying awaiting drugs

By John Heys Staff writer

Three West Virginians have died since February while waiting for free HIV/AIDS drugs from a federally funded drug assistance program. At least fourteen others are still waiting. The state’s AIDS Drug Assistance Program stopped taking new patients almost seven months ago because the federal funding isn’t enough to cover the costs of their drugs, said the director of West Virginia’s HIV/AIDS/STD program.

“People are now starting to die while they’re on the waiting list,” said Dr. Faisal Khan. “It is a crisis that will continue.” Fifteen other states have cut back their drug assistance programs for people with HIV and AIDS, and others, including Texas and Florida, are considering doing so, Khan said. People infected with HIV who don’t qualify for Medicaid or other drug programs and meet income requirements can get certain anti-retroviral drugs free. The program also provides drugs to fight infections like pneumonia and tuberculosis, which can develop once a person’s immune system is damaged by the virus.

For patients taking multiple anti-retroviral drugs, taking three of these drugs costs about $14,000 a year. Some patients must take four or five. Jay Adams, an HIV care coordinator with the AIDS Task Force of the Upper Ohio Valley in Wheeling, said the waiting list will likely grow. He’s taken calls from people interested in the drug assistance program from other states looking to move here and from West Virginians who recently learned they were HIV positive.

“There’s no end in sight,” Adams said. “It’s a very serious problem.” In 2002, West Virginia’s drug program received about $1 million from the federal Health Resources and Services Administration to buy HIV/AIDS drugs for people who can’t afford them. The program also gets rebates from drug companies to help with drug costs. If people meet all the program’s requirements and have a doctor’s prescription, they can get the drugs they need within days. “Now, that comes to a screeching halt,” Adams said.

Three-hundred forty people are enrolled in West Virginia’s version of the program, and Khan said the enrollment has been increasing the past two or three years. But federal funding for the program isn’t linked to how many people use it. Instead, federal health officials base the amount of money a state gets on how many AIDS cases are diagnosed in that state.

For West Virginia, that number is small compared to other states. But it doesn’t include people with HIV who don’t yet have full-blown AIDS or people who moved to West Virginia after being diagnosed in another state. Drug assistance programs like West Virginia’s are struggling as the federal government urges more HIV testing and a new emphasis on those who already have HIV or AIDS to prevent the spread of the disease.

The federal initiative, first announced in April by the Centers for Disease Control and Prevention, could also mean changes in funding. “There are huge question marks about how this will be funded,” Khan said. If the federal government doesn’t provide more funding, Khan said, pulling money from current programs to pay for others could be self-defeating. West Virginia got about $1.8 million from the CDC this year for AIDS prevention efforts, Khan said. A national group of AIDS directors for U.S. states and territories released a statement in July calling several parts of the CDC’s new plan, including the emphasis on HIV-positive people, “highly troublesome to health departments.”

Khan said the 13 community-based groups that work on AIDS prevention efforts in West Virginia are probably safe from direct cuts in their funding as a result of the shift in federal priorities. The goals of most of the programs are in line with federal guidelines, he said.

But Khan said cuts are possible in other budget items for the state’s HIV/AIDS/STD program, such as money for travel expenses or informational brochures for the public. The state is still working on its funding request for next year, which is due in October, Khan said.

State officials should know by the end of November or early December how much money they’ll be getting from the CDC. As of June 2002, 554 known people with AIDS were living in West Virginia, according to the Department of Health and Human Resources. Since 1984, more than 1,200 people with AIDS have been identified in the state.

Nationwide, about 40,000 new HIV infections have been reported every year for about the last 10 years, and as many as 200,000 people around the country have HIV and don’t know it, the CDC estimates.

Five People Died Waiting This Year
Kentucky ADAP Crisis on Local NBC News
AIDS Medication Out Of Reach For Many

WAVE   By Eric Flack

(LOUISVILLE, September 24th, 2003, 7 p.m.) -- Advocates for AIDS patients in Kentucky say people are dying because they can't afford their medication. And they say the state hasn't set aside enough money to help. The state admits the number of people who need medication but can't get it is getting longer.

The House of Ruth in Louisville helps people below the poverty line fight an expensive illness. AIDS treatment costs more than $9,000 a year. It's expensive for Kim Smith, and she has "insurance and a job. And a doctor would take care to make sure I had the best there was available. And when you don't have any means to start with, it seems like quite a big hill to climb."

Al was diagnosed with full-blown AIDS eight months ago. At the time, he thought his diagnosis was a death sentence. "I was thinking there was no hope for me."

But now Al has hope. For now, his medication is working -- drugs paid for in part by the University of Louisville. Still, with $700 a year in co-pays and no job, Al simply says he simply doesn't "have the money."

A program called the Kentucky AIDS Drug Assistance Program, or KADAP, pays for AIDS medication for the uninsured.

Rhiannon was one of the first people participate in the KADAP Program. Rhiannon is one of the lucky ones, and knows it. "There's too many people out there with HIV and AIDS who need the medications," he said. "They need them now. They don't need to wait."

But al is waiting. And he isn't alone.

Right now, 169 people in Kentucky are on the KADAP waiting list. By December, that number is expected to grow to 200. Already this year, five people have died waiting for medication.

KADAP gets more than $4 million a year from the federal government. The state only puts in $90,000 -- that's enough to pay for medication for nine people a year. But not enough for Al.

"It's hard for me to go to sleep at night," Al says, "because I'm so scared I might close my eyes and not open 'em back. That's the hardest part."

KADAP already stretches its dollars as far as it can. The amount it spends on each patient is one of the lowest in the nation. The coordinator of the KADAP says they plan to ask for more money when budget negotiations start later this year. Whether they get it remains to be seen in these tight budget times. And Kentucky isn't the only state with a problem. Fifteen other states have waiting lists, too.


relayed by The ADAP Working Group, Washington, DC (202) 588-1775 12 October, 2003


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