Funding crunch flattens HIV/AIDS drug access

Washington -- Patients in many states are not receiving life-extending HIV antiretroviral drug therapy, and others are struggling to get services for comorbid conditions, according to the latest results of an annual survey by the Kaiser Family Foundation.

"The toughest part of the whole thing is providing comprehensive care to these patients who fall between the cracks," said Joseph Cervia, MD, director of the Comprehensive HIV Care and Research Center at Long Island Jewish Medical Center.

The survey revealed weaknesses in implementation of the Ryan White CARE Act, which was intended to fund HIV care for low-income patients who don't qualify for Medicaid.

The act enabled communities to establish locally run AIDS drug assistance programs, or ADAPs, with funding shared by the state and federal governments. But because of state fiscal problems and stark variabilities in how the programs are run from state to state, patients in some areas are experiencing overwhelming difficulties in obtaining HIV therapies.

"What people are able to get completely depends on where they live," said Jennifer Kates, the Kaiser Foundation's director of HIV/AIDS policy.

Kentucky's program, for example, gets only $90,000 a year from the state. This pays for about 10 days' worth of medicine for the program's clientele. Qualifying as a needy state, Kentucky also receives close to $500,000 a year from the federal government. That money, too, falls short, and the state is one of 10 with an ADAP waiting list.

Driven by development of highly active antiretroviral therapies, these programs have grown dramatically in the past decade and now consume the bulk of Ryan White funding. Some 136,000 patients, or about 30% of the HIV/AIDS population, receive HIV medications through ADAPs.

But there are 1,472 patients on ADAP waiting lists across the country, according to the Health Resources and Services Administration.

"Waiting lists are only one measure of limited access," Kates said. "Not every one is counted who is waiting for services. Not everyone has access to a primary care physician to get a prescription for medication."

While most programs have yet to resort to waiting lists, more and more are adopting restrictive drug formularies, reining in income criteria and contemplating drug co-pays.

"The CARE act does a great many wonderful things," said Robert Garofalo, MD, MPH, an attending physician at Children's Memorial Hospital in Chicago. "Unfortunately, there is just not enough money in the CARE act to go around."

A recent Institute of Medicine report found widespread gaps in the availability of funding for HIV care.

Based on those findings, the IOM recommended that the federal government establish a national program to take over funding for HIV patients' care, including ADAPs. Like Medicaid, the program would be administered by the states, but unlike Medicaid, it would be fully financed by the federal government.

"This bold proposal would reduce the great disparities in access to health care for people living with HIV by creating a program that sets national standards for benefits, eligibility and provider reimbursement," said Daniel Kuritzkes, MD, vice chair of the HIV Medicine Assn. "Most importantly, it creates a funding stream that would save nearly 20,000 lives and reduce premature deaths by 56% over a 10-year period."

The American Medical Association advocates continuation of the current system of private and public coverage, combined with a significant expansion of state risk pools, as the best way to ensure access to HIV care. More Medicaid coverage and insurance assistance programs also might be needed to improve care for low-income patients and pregnant women with HIV, according to AMA policy.

Drug access only part of problem

The gaps in ADAP funding are significant, but they aren't the only CARE act inadequacy, according to physicians who treat HIV patients.

"Even if their HIV meds are covered by the ADAP -- and that's an if -- there are plenty of other primary health care conditions where [patients] can't get their medications covered, whether it be asthma or depression or allergic rhinitis or any old illness that comes along," Dr. Garofalo said.

ADAPs don't cover drugs that HIV patients might need for comorbid conditions. There seems little logic in paying for HIV therapy but not other conditions to which AIDS patients are susceptible, doctors said.

"AIDS is a protean disease. You can't simply separate care of one part of the body from the others," said the HIVMA's Dr. Kuritzkes.

Very little money is available to pay for physician services provided to HIV patients, he said.

Dr. Garofalo said that he considers his center very lucky for the Ryan White money it receives, though it is by no means its only funding source. But some physicians have found themselves locked out of what little government funding is available for providing care to HIV patients.

"Ryan White doesn't track with the patients, it tracks with the programs," Dr. Kuritzkes said.

The physicians noted that helping HIV patients maintain their health has multiple benefits, such as allowing them to work and reducing the risk of the virus' spread.

While President Bush's proposed budget for next year includes an increase of $35 million for ADAPs, to $783.8 million, other components of Ryan White would not be increased, Kates said. The challenges of providing primary care and integrating medical services with drug assistance will continue.

A lack of funding for primary care, specialty care and treatments for comorbid conditions is a problem that not only affects physicians' ability to provide HIV care, but one that seems to be discouraging young physicians from entering HIV medicine, Dr. Cervia said.

His center's clientele has grown from 50 to 500 patients in recent years, but the staff is the same size as when he started, he said.

"Providing good comprehensive care to HIV patients isn't something one can do on one's own," Dr. Cervia warned.