Funding problems persist for state AIDS help

Washington -- Tough times are increasingly squeezing state AIDS drug assistance programs, which were already struggling to meet the needs of the infected patients.

ADAPs, established as part of the Ryan White CARE Act, are the last stop for HIV and AIDS patients without access to private or public health insurance who need antiretroviral therapy to stay alive. But federal and state funding for the programs has failed to keep up with need. This has led many states to adopt cost-containment measures, such as enrollment caps, waiting lists and formulary restrictions.

Congress added $38.7 million to ADAP funding, for a total of $787.28 million in fiscal year 2005, but experts question whether that money will go far enough.

"It is not going to get us out of the hole that we're in," said Laura Hanen, director of government relations for the National Alliance for State and Territorial AIDS Directors.

Although the extra federal funding is helpful, many ADAPs are getting little or no money from their state governments. In addition, Medicaid eligibility cuts are increasing patient loads for ADAPs, while the cost of drugs for the programs continues to increase.

These trends are troubling but are really just the tip of the iceberg, said Bruce Schackman, PhD, assistant professor of health policy at Cornell's Weill Medical College in New York City.

The Centers for Disease Control and Prevention estimates that there are between 850,000 and 950,000 HIV-positive people in the United States. But as many as a quarter of them don't even know that they are infected.

"There's a real mandate now to test more and to try to identify these 200,000-plus people who are infected and don't know it," said Rochelle Walensky, MD, MPH, assistant professor of medicine at Harvard Medical School and an infectious disease specialist.

"You can imagine what that's going to do to the ADAPs. Because now we're only dealing with the people who know they have infections," she said.

Even among those who know they are infected, it is unclear how many are going without treatment. States have only recently begun to report to the CDC the names of patients who have been identified with the disease. And while a few states keep waiting lists of patients they don't have room for in their ADAPs, most do not.

Rural states struggle

Already concerned about U.S. AIDS rates that continue to increase, experts fear a growing public health crisis due to gaps in the funding network.

According to a recent report from the AIDS directors alliance, nine states have waiting lists, 13 have capped enrollment and/or instituted restrictive formularies, and six expect to implement some form of cost-containment measure soon.

Rural states with relatively large HIV-positive populations have been hit hard, including Alabama, which has had a waiting list on and off for years.

Recently, the state has not been able to find enough funding in its budget to take full advantage of federal matching, said Michael Saag, MD, director of AIDS research at the University of Alabama School of Medicine and founder of the university's AIDS treatment center.

So far, waiting-list patients have been able to get their medications through drugmakers' patient assistance programs, he said. But he estimates that the clinic's three social workers spend almost 90% of their time getting patients enrolled in those programs -- time they could be spending on case management.

Patient assistance programs are a temporary solution at best, Hanen said. "The pharmaceutical companies have been generous, but they are going to grow tired of bailing out the federal government," she added.

North Carolina has faced similar problems, although the state puts more than $11 million of its own money into its program.

"Still, our demand far outweighs supply," said Patrick Lee, project director with the Piedmont HIV Health Care Consortium in Durham. He said patients sometimes go several months without treatment.

Said Dr. Walensky: "It is such a patchwork of how the care is being funded. It's just mind boggling, really."

Even when patients get coverage, the adoption of restrictive drug formularies can make AIDS treatment clinically untenable, she said.

"You have to take into account medical histories, toxicities, history of antiretrovirals, comorbidities such as liver functions," she said. "And it's just very hard to do that even with the 20 antiretrovirals we have, never mind what's limited to us because the patient is on ADAP."

With patients going months without treatment and limitations being placed on formularies, the funding problems are raising the specter of drug-resistant strains, Schackman said.

Feds doing what they can

The federal government has made an effort to address these funding gaps. When the waiting lists in 10 states peaked last spring, growing to include more than 1,700 patients, Health and Human Services officials announced an additional $20 million to pay for drugs for those patients.

By the time the new federal funding became available in October 2004, however, several of the original waiting-list states found money to pay for those patients, while other states started new waiting lists. This left a smaller pool of eligible patients. The states with new waiting lists are not eligible for the extra money.

So far, more than 700 AIDS patients have received their drugs through the HHS contract, and the money is expected to last for about a year, by which time it is hoped that those patients will have some other option for getting their drugs, said Douglas Morgan, director of the division of service systems in the HIV/AIDS Bureau of the Health Resources and Services Administration.

The money is good news for those patients but, with no assurances that the additional funding will be extended, it does little to ease concerns about what the programs will do to pay for treatment over the long term, Dr. Saag said. "Each year we see more and more patients."

HRSA officials share that concern, Morgan said. "We're hopeful that the administration and Congress will appropriate the dollars needed, but we have to work within the limitations of the final appropriations that are made to us," he said.

HRSA is also working with the states to help them run their programs more efficiently, as well as to access special rebates and discounts that have been negotiated with drug companies, he said.

"Quite frankly, there's not much more we can do."