FED AIDS GUIDELINES CHALLENGED

Guidelines for Ryan White funding to help people with HIV and AIDS are so strict that most of the money slated for Southeast Missouri will not be spent, opponents of those guidelines charge.

But the chairman of the consortium which oversees spending of the funds argues that the guidelines were established to help protect the limited amount of emergency funding allotted for the region.

Southeast Missouri received $15,000 of the $100,000 in emergency Ryan White funding allotted statewide to cover gaps in services after the program was overspent by $1.6 million statewide.

Federal guidelines for the emergency funding mandate that only clients with incomes at or below 100 percent of the federal poverty level receive assistance with Ryan White funding.

In January, the Southeast Missouri Ryan White consortium board further stipulated that the funds would be used only for medical services and medications for people who do not receive Medicaid or Medicare assistance.

In the past, Ryan White funding had also been used to help HIV and AIDS patients pay their utility bills and buy food, hygiene items and other household supplies.

Those stricter guidelines are putting too great a burden on some patients, charges Mike B., 37. Mike used to live in St. Francois County, which is in the Southeast consortium's service area, but he recently moved to Washington County, which is served by the St. Louis consortium, in order to receive more services.

"Very little of the funding will be used" because so few AIDS and HIV patients in Southeast Missouri meet the stricter guidelines, Mike said.

In September, when the overspending was discovered, all services stopped.

"Now we've got the emergency funding, and we still get nothing," Mike said.

Mike, who was diagnosed with AIDS more than two years ago, said he lives on approximately $5,700 a year in Social Security and disability benefits.

He is on Medicaid, "but that doesn't cover all of my medications, so I have to pay for them myself," he said.

"If it hadn't been for my family, my butt would be on the sidewalk," Mike said. "Unfortunately, there are a lot of people who don't have supportive families. People are dying because of a lack of services and a lack of care."

Bob, 39, of Cape Girardeau County, is also no longer eligible for Ryan White assistance.

"It's just like they don't want to help us," he said. "They get money allocated to them, and they don't want to spend it."

Bob was diagnosed as HIV-positive about a year ago.

"When the Ryan White funding ended, I had six teeth in my mouth and the doctor I went to up in St. Louis had set me up for an appointment to get the rest of them pulled," he said. The teeth were pulled, but Bob didn't have the money to pay for dentures because there was no Ryan White funding.

He finally received assistance through a fund set up by singer/songwriter Elton John, and he says he hopes he'll get his dentures this week.

Bob and Mike B. say they were never notified by the consortium that the local guidelines were going to be changed.

But Cecil Strachen of Sikeston, who chairs the Southeast Missouri consortium, says they and others never showed up at the board meetings.

Strachen said notices of meetings are regularly sent out, and if Bob and Mike B. weren't getting those notices, they knew how to get information about when and where the consortium would meet.

"If they wanted to find out what's going on, they have my phone number," he said. "We've had meetings there in Cape. They never showed up."

Because funding is so limited, Strachen said, the area consortium wanted to make sure the money would go to those who need it the most.

"That's what this program is about. This program is not an entitlement," he said. "That's the bottom line."

Nanci Gonder, a spokeswoman for the Missouri Health Department, said the income guidelines were set by the federal government. Guidelines for what services would be covered were set at the local level, she said.

After services were cut off in September because of mismanagement of the state's Ryan White grant, the local consortium wants to guard against overspending, Strachen said.

"You have to be realistic about this," he said. "When you say there's money available for this and this and this, you've got people who are going to come and get it. You have to look at the services you have available and how far is this money going to go."

It doesn't go far enough, said Dave Peters, who chairs the Outstate Missouri Ryan White consortium, which includes Southeast Missouri.

Combinations of AIDS drugs like AZT and other newly developed medications can cost $16,000 to $20,000 annually per patient, Peters said.

"That's a sizable chunk of money," he said.

In addition, some tests, such as viral DNA testing, which shows how much of the AIDS virus is present in a patient's system, are not covered by Medicaid, but are eligible for reimbursement through Ryan White. Those tests can cost $150 and up per patient.

"There's a number of issues that are coming up in terms of cost," he said.

The new funding cycle for the Ryan White Act starts in April, but that probably won't bring much relief, he said.

Because of changes in the way AIDS is reported, Missouri's caseload of HIV/AIDS patients does not show the same growth as seen in other states, Peters said. That means Missouri will not receive as much funding. Since the federal appropriations bill for the Ryan White program has not yet been approved, the funding pool will be smaller, which will cut further into the state's allotment, he said.

Less funding means fewer services, such as utility and food assistance, will be covered in the future, Peters said.

"I don't think that we'll be using Ryan White for those things, because in the past, we had enough funds to support those services," he said. "Now we don't."

Another part of the problem is that there is no infectious disease specialist in Southeast Missouri. Patients have to travel to Memphis or St. Louis to receive specialized treatment, and many don't have transportation or can't afford insurance or fuel to drive that far, Bob said.

Charlotte Craig, director of the Cape Girardeau County Public Health Center, said the county has received about $31,000 in Ryan White funding so far to help operate the Cross Trails Medical Center, a not-for-profit primary health care clinic. The logic was that the clinic could provide at least basic health services for HIV/AIDS patients, as well as others without access to medical care.

The clinic is not equipped or staffed to treat AIDS, she said, but staff can perform some lab work and testing, as well as providing basic care.