FRANKFORT — Kentucky has the nation's longest waiting list for a program that helps provide free or low-cost life-saving drugs to poor AIDS and HIV patients.
As the recession drives more people into the Kentucky AIDS Drug Assistance Program, federal funding has stagnated and state funding has disappeared. Currently, 1,277 people are enrolled in the program. Nearly 100 people are on a waiting list that started in June.
"We have 20 to 30 people coming in every month, and everyone who comes in goes on the waiting list," said Sigga Jagne, the state's HIV/AIDS program manager. "Everyone who is on the waiting list now, we don't know how long they're going to be there. Nobody is coming off the list at this point."
Delays can be lethal given the extraordinary cost — as much as $10,000 per person a year — and the complexity of the drugs necessary to fight AIDS, HIV and related infections, advocates say.
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Also, patients who miss dosages once they begin treatment, risk building a resistance to the antiretroviral drugs.
"This program makes every difference in quality of life," said Bobby Edelen, an HIV-positive health activist in Louisville who works with KADAP patients. "People who get their medications are not always putting out fires, as it were, and rushing to the emergency room for treatment."
Every state has its own version of KADAP, mostly built on federal funds. But as of Oct. 8, only eight states had waiting lists. Nebraska had the next-longest list with 75 people.
The Government Accountability Office issued a report last month criticizing the U.S. Department of Health and Human Services for inadequately studying how the states use federal funds for these drug programs and how the funds might be better distributed among the states based on need.
In Kentucky, 5,015 AIDS cases have been reported to state health officials since 1982, predominantly around Louisville and Lexington, of which 2,707 are presumed to involve patients still alive. More than 1,400 HIV infections have been reported since 2005, most of them without a concurrent AIDS diagnosis.
The good news is new drugs help many AIDS and HIV patients live relatively normal lives longer than they once did, state officials said. But pharmaceutical progress isn't cheap. A 30-day supply of Reyataz, an antiretroviral drug, can cost $1,032 without insurance, they said.
KADAP gets its drugs cheaper through a mail-order service — that same Reyataz supply, for example, costs the program $671 — and distributes them to low-income patients through clinics around the state. At the University of Kentucky's Bluegrass Care Clinic, about 25 percent of the roughly 800 AIDS and HIV patients don't have insurance and get their drugs through KADAP.
Demand for assistance from the drug program is rocketing during the recession as Kentuckians lose their jobs and insurance, Jagne said. But federal funding has dropped from about $4.8 million in 2005 to $4.5 million this year. State funding — about $250,000 a year — ended in 2007.
State officials say they're not sure how much more it would cost to bring everyone in off the waiting list, in part because patients' needs are different and so many people keep applying.
State lawmakers acknowledge they have overlooked the program. They think it deserves state money again, but nobody is sure where that money would come from in the 2010 General Assembly, where the talk will be about cuts. Economic forecasters predict a possible state budget shortfall of more than $1 billion over the next two years.
"Frankly, with some of these programs, the legislature just loses track of them because at any given moment there's 1,500 issues in front of us," said House Health and Welfare Chairman Tom Burch, D-Louisville.
"But the state has an obligation to take care of those who cannot care for themselves, and that includes low-income AIDS patients," Burch said. "Plus, it's extremely short-sighted to cut a preventative drug program like this. If somebody goes into full-blown AIDS and has to be hospitalized, now we're all spending the big bucks."
State health officials say they're not sitting idly as the waiting list grows.
To squeeze tens of thousands of additional dollars out of KADAP, Jagne said, the state is switching to generic drugs when possible and steering some KADAP applicants into other programs for which they may be eligible, such as newly enhanced COBRA insurance coverage for those recently laid off.
Even patients on the waiting list can get some help.
The Cabinet for Health and Family Services guides low-income AIDS and HIV patients through the Kentucky Prescription Drug Assistance Program, where they can get necessary drugs at a discount. Still, they must apply to each pharmaceutical company individually, which can be daunting if you regularly take a lot of drugs, said Dr. Kraig Humbaugh of the state Department of Public Health.
"This is not an ideal alternative," Humbaugh said, "but it is an alternative."