States handle shortfall in a variety of ways

Everyone reports higher costs, uncertainty ahead

States across the nation are gearing up for a cold fall and winter when it comes to funding for the AIDS Drugs Assistance Programs (ADAPs).

While the goal of each state ADAP is to provide HIV medications to each person who qualifies and needs treatment, the reality is that many states only can afford to assist a portion of those people. For ADAPs that find their state and federal funding doesn’t cover everyone who qualifies, that may mean changes that could include capping enrollment, starting waiting lists, reducing the formularies, requiring generic drugs, cutting additional health care services, lowering financial eligibility, imposing cost sharing, and prescription limits.

Here’s a nutshell look at a number of different states and how they have handled their current ADAP situation:

Alabama: With a waiting list that has existed for six years, Alabama is accustomed to ADAP funding shortfalls. The waiting list grew to more than 100 in April.

"We’ve negotiated for the wholesale price of drugs, and we do whatever we can do," says Jane Cheeks, JD, state AIDS director in the division of HIV/AIDS prevention and control at the Department of Public Health in Montgomery.

"As far as we know, everyone who wants medication can get it through compassionate pharmaceutical programs or some other mechanism of funding," she says. Also, in April, Alabama started a Medicaid AIDS waiver program, which means that if people meet certain criteria they will be eligible for Medicaid, Cheeks says. "That will take some people off our waiting list."

Florida: The state has avoided having ADAP waiting lists, although ADAP officials have been concerned that they might have to cap enrollment for the past two years, says Joseph May, AIDS Drug Assistance Program manager for the HIV/AIDS program at the Florida Department of Health in Tallahassee.

"We received an $8 million increase in federal funds on April 1, and that has bought us a little time," he says. The federal funding increase was welcome news because the state’s own ADAP funding has remained level for the past two years, and there may be state budgetary concerns since the state’s constitution prohibits a deficit, May says.

Also, Florida’s ADAP has added the infusion inhibitor Fuzeon to its formulary, and it’s possible this drug could cost the program millions of dollars extra, he adds.

So far, only three of Florida ADAP’s 13,000 clients have been prescribed Fuzeon, which costs the state roughly $25,000 a year, May says. Fuzeon’s cost is in addition to the patients’ other highly active antiretroviral treatment (HAART), which costs an average of $15,000 a year, because patients who receive Fuzeon still take the other antiretroviral medications as well, he adds.

"We don’t want to sound alarmist necessarily, but if everything stayed the same and Fuzeon took off, probably by October, we’d be very concerned," May says.

Indiana: Last year, Indiana’s ADAP had a waiting list that approached 70 names, but the funding situation improved, and there was no waiting list through spring 2003, says Larry Harris, ADAP administrator with the HIV/ STD division at the Indiana State Department of Health in Indianapolis.

In Indiana, there is a Health Insurance Assistance Program (HIAP) in which the bulk of the 1,270 ADAP clients are enrolled. The program provides comprehensive medical services, along with the necessary medications to HIV-positive patients, he explains.

"What happens is people sitting in ADAP are waiting for the pre-existing period before rolling over to HIAP," Harris says.

Federal grant funding provided $1 million more than the state anticipated, and that has helped prevent the need for a waiting list, he says. Although the state has a hiring freeze and the typical budgetary concerns that most states are experiencing this year, ADAP officials do not anticipate a major problem for the remainder of 2003, Harris explains.

Kentucky: Earlier this year, the Kentucky ADAP had a waiting list of more than 140 people. The situation improved after the April 1 federal grant was received, and the waiting list fell to around 110, but since the state has about 20 new ADAP applications each month, it’s likely the waiting list will continue to grow through 2003, says Trista Chapman, Kentucky ADAP coordinator with the Department of Public Health in the HIV/AIDS branch in Frankfort.

"It’s possible it will be next April 1 before more people are taken off the waiting list," she adds. State ADAP funding has remained at $90,000 for many years, and Kentucky received a slight increase in federal grant funds this year, Chapman says. While ADAP officials once were hopeful that the state’s Medicaid program would raise its income level for eligibility and, therefore, begin serving some of the clients who currently receive HIV drugs through ADAP, now it’s clear that will not occur, she says. "Medicaid has a deficit."

Nebraska: The waiting list of 29 clients, which held steady through the spring, amounts to about 17% of Nebraska’s average number (168) of ADAP clients per month, says Russell Wren, program manager for Ryan White Title II in the division of disease control in the Nebraska Department of Health in Lincoln.

Also, Nebraska has had to cut its drug formulary from 95 drugs to 19 drugs, all of which are antiretrovirals. Although the other drugs only amounted to about 2.5% of the drug budget, that small amount of extra money was needed to serve clients, he says. "We’ve consistently received $150,000 in state funding since 1999," Wren says. "Our legislature is debating the next biennial budget, and we don’t know if any cuts will be made in our funding."

The state’s waiting list began in November 2002 and has continued as the state’s new client caseload has averaged five to seven people per month, he adds. "I don’t think the situation is going to get any better because we already know there’s an increasing need. We’ve capped enrollment where it is right now."

Meantime, the state is cutting Medicaid because of budget problems, and the ADAP program may find its waiting list grow as former Medicaid patients now need ADAP help, Wren adds.

New Hampshire: The state’s ADAP had a 25% increase in clients last year, and there’s a fiscal crisis as a result, says Sarah Duffley, care program administrator with the Department of Health and Human Services in Concord.

The state’s ADAP growth previously was in the 15% range, so the recent jump is a new and alarming change, she says.

It could be that more people are finding out that they are HIV-positive, or it could be that some HIV-positive people are moving to New Hampshire, Duffley says. "We don’t know why that is happening, but we did have more clients."

Meanwhile, she says, the state’s funding for ADAP increased by less than 1%. "We’re examining all sorts of possibilities of how to provide the most services to the greatest number of clients. We have an open formulary now, and we are considering restricting the formulary and having a waiting list."

Another possible option is to have a preferred drug list, so that if an ADAP client has an infection, the person can be treated with a less expensive antibiotic before using a more expensive drug, Duffley says.

North Carolina: The state’s waiting list, which had existed on and off since December 2001, climbed to 170 in April but dropped to zero by midspring with the expectation that the waiting list would begin all over again by summer, says Steve Sherman, AIDS policy and ADAP coordinator in the Department of Health and Human Services in Raleigh.

Since the state’s ADAP likely will receive no funding increases the remainder of this year, the program’s ability to enroll new clients mostly will depend on how much money is left after it serves the existing caseload, he says.

And it’s difficult for North Carolina ADAP officials to predict a monthly utilization this year because their client load dramatically changed after the annual, January-March reauthorization of ADAP clients, Sherman says. "Every year when this happens, we lose a fairly large number of clients, probably between 20% and 25% of the people enrolled in one program. Maybe they became Medicaid eligible or moved or died, or other reasons."

This year the turnover was even higher, so ADAP officials have no idea how costly this summer’s caseload will be, Sherman says.

But even under best-case scenarios, there likely will be a waiting list during the second half of 2003. North Carolina’s state budget has had major shortfalls in recent years, and there have been major state cutbacks, Sherman says. "ADAP hasn’t lost any money when other human service programs have, so many of us consider it to be a win."

Texas: In late April, I. Celine Hanson, MD, chief of the Bureau of HIV and STD Prevention in Austin, forecast that the Texas HIV Medication Program will have a $12 million budget shortfall in 2004 and a $16 million shortfall in 2005.

To address this budgetary problem, the Texas Bureau of HIV and STD Prevention decided to examine the program for internal efficiencies and cost-saving measures, seek financial assistance from outside resources and, as a last resort, modify the current formulary, limiting cost per client of medications provided or cap enrollment, she says.

The Texas ADAP has experienced a dramatic increase in HIV drug costs in recent years, with costs rising 21% between 1999 and 2000 and 11.1% between 2000 and 2001. Total HIV medication costs in 2001 exceeded $50 million, and state officials estimate that this year’s financial need will rise to $64 million, about $7 million short of what is budgeted, according to a Texas Department of Health fact sheet.