Ryan White, ADAP, Medicaid funding problems could push HIV providers to the end of their tethers
Health care providers subsidize patchwork system
Optimism is difficult to muster these days, according to HIV providers and others who have dedicated their lives to helping HIV-infected Americans receive the treatment and care they need.
While Congress postpones reauthorizing the Ryan White Care Act, which was due for renewal in September, and funding budgets proposed from all fronts are inadequate to cover the growing need, HIV advocates say it will become increasingly difficult for the front-line workers and clinics to keep their HIV patients healthy.
"We're the silent glue that holds the fragments of our health care delivery system quilt in place," says Michael S. Saag, MD, professor of medicine and director of the University of Alabama at Birmingham (UAB) Center for AIDS Research in Birmingham, AL.
"We have a totally fragmented health care delivery system, especially when it comes to medications, and the only way you can keep people from falling through the cracks is through health care workers who give a damn," Saag says.
For example, Saag and colleagues have conducted research on health care expenditures for every HIV patient seen in one year's time, and what they found was that the average cost per patient per year was $18,300, he says.
If the patient's CD4 cell count was less than 50 copies, then the average care cost was about $42,000 per year, and if it was above 350 copies, then the treatment cost was about $12,000 a year, Saag says.
Between 75 and 80 percent of that expenditure goes toward medications, about 12 percent goes toward procedures, including lab tests, and 6 to 7 percent is for hospitalization, Saag says.
"And the actual reimbursement to a clinic for providing care, and this is assuming for all of these costs that the patient is fully insured and collection rates are 100 percent, then the maximum we can collect per patient per year is $370," Saag explains.
So at clinics like the one at UAB, the reimbursement for caring for 1,000 HIV/AIDS patients comes to $370,000 to cover physician, RN, social worker, phlebotomist, and other salaries, as well as rent and overhead expenses, Saag says.
Now the reality is even starker, as only 30 percent of the clinic's patients are insured and the collection rate is only about 40 percent, so that brings the real world collection rate at $130,000 per year to cover all patient care, Saag says.
"That's the amount we can charge insurance companies or the federal government," Saag says. "Our cost of business is $2.1 million per year, and the difference is made up by Ryan White Title III funds, for which we get $500,000 per year, and UAB covers the rest of it."
When the universities and hospitals and HIV clinics dedicated to subsidizing the cost of caring for HIV/AIDS patients no longer have the financial ability to do so, or when health care staff become burned out from the bruising paperwork and thankless system and they quit and cannot be replaced, or when HIV clinics disappear altogether as many private practice HIV sites have, then the nation's patchwork quilt of health care infrastructure will fall apart, Saag says.
Ryan White is set to receive only flat funding, with a potential decrease if Congress decides to cut all programs across the board, as it has previously, says Laura Hanen, director of government relations at the National Association of State and Territorial AIDS Directors (NASTAD) in Washington, DC.
The only proposed increase for HIV programs is a $10 million increase for the AIDS Drugs Assistance Program (ADAP), Hanen says.
"We've had states with chronic waiting lists for five years plus, and the $10 million increase for ADAP, if we get it, is highly inadequate," Hanen says. "Also there likely will be a 1 percent, across-the-board cut that Congress continues to use in appropriations bills, so AIDS programs are going backwards."
At the same time, there have been some draconian cuts in a number of state Medicaid programs, all impacting people with HIV/AIDS, says Christine Lubinski, executive director of HIV Medicine Association in Alexandria, VA.
"One example is Tennessee where hundreds of thousands of people have lost TennCare, including people with HIV/AIDS," Lubinski says. "It's gone from being a pretty good state for access to AIDS care to one where there are huge challenges in meeting the basic needs of people."
TennCare was designed as a Medicaid waiver program that initially enrolled the traditional Medicaid population plus people who were uninsured and people who were uninsurable, but the state has had to make significant cuts in care and eligibility criteria due to budget problems.
Since Medicaid pays for HIV drugs for about 40 percent of HIV patients on antiretrovirals nationwide, any cuts to state Medicaid programs can have a significant impact on health services for HIV clients, says Greg Smiley, MPH, public policy director of the American Academy of HIV Medicine in Washington, DC.
"We really have to shore up the Medicaid program from the state and federal perspective and focus on an expansion of Medicaid," Smiley says.
When federal and state funding are inadequate to cover HIV patients' medication and treatment needs, then the costs fall on the health care providers who care enough to make up the difference, providers say.
The HIV clinic at UAB hires three fulltime social workers who spend their entire working days filling out forms on their clients' behalf to obtain drugs through pharmaceutical corporations' compassionate use programs, Saag says.
The reason it takes this much staff time is because Alabama is one of the poorest states with one of the most difficult eligibility requirements for Medicaid, and there are 350 people on the ADAP waiting list, Saag explains.
"To be eligible for Medicaid you have to have total disability and have a monthly income of roughly around $500," Saag says. "It's a catch-22 because most people have worked and paid into social security at least a few years, and when they're disabled they get an SSI check of around $510 a month."
This means that very few people receive HIV drugs through Medicaid, and Alabama doesn't fund its ADAP program well enough to cover all of the HIV-infected people who are uninsured and poor, he says.
As a result, clinics in resource-poor states like Alabama have to devote staff positions to the task of finding free drugs for poor HIV clients, and as ADAP and Ryan White remain underfunded on the federal level, this situation will only get worse, Saag predicts.
Alabama's health care funding problems are where the rest of the country's headed, he says.
"It's a question of how much catastrophe will happen along the way," Saag says. "The whole health care system is heading for disaster and it's affecting more and more people with costs rising at about 8 to 10 percent a year, and the majority of those costs are medications."
HIV clinics in Tennessee, as in Alabama and elsewhere, increasingly are having to make changes that will enable their services to survive the growing financial constraints.
"It's only a matter of time before resources are increasingly strained, and that will translate into us having to develop some new strategies in terms of how we treat people," says Edwin C. Sanders, II, senior servant with the Metropolitan Interdenominational Church of Nashville. The church has a primary care facility which provides health care services, transportation, clinic and pastoral counseling, and other programs for HIV clients.
"We work with a population that does not respond easily to traditional strategies and modes of treatment, and that population is the most difficult to reach," Sanders says. "So we don't only diagnose and prescribe, but we also do hands-on follow-up that allows us to make sure people are adhering to their medical regimens, and we make house visits to make sure people are taking their medications and eating properly and doing the things that will sustain their health."
Before the nation's disastrous hurricane season, which has resulted in billions of dollars in additional commitments by the federal government, AIDS advocates were hopeful that when Ryan White was reauthorized it would include additional funding.
More money is needed, partly because many smaller states in the Southeast have a disproportionate share of HIV-infected people, but do not have the large metropolitan areas which would enable them to receive additional federal funds to handle their caseloads.
So AIDS advocates were confident in late 2004 that Congress would rewrite Ryan White to give a bigger piece of the pie to these struggling states, which include North Carolina, Alabama, and others.
However, now advocates say they doubt here will be any more money for Ryan White, so any changes made to the reauthorized act to give more money to some states will come at the expense of other states.
"The trouble we're facing is that when you have everyone fighting over the same pie, groups that are advocating for their particular populations tend to one another," Smiley says.
Still, the disparities between the resource-poor Southeastern states and some of the Northeastern states are apparent, Smiley notes.
"I think in general we see some localities where folks have a lot of social services paid for, while in other localities they don't have access to HIV medications, so there are things we need to do to improve care," Smiley says. "We really need both improvements in the Ryan White Care Act and additional funds—we can't do it with the same money we have."
Some states, such as California, have significant state commitments to ADAP and they receive a huge amount of federal money, Lubinski notes.
"While it's a struggle every year, and they have to go out and ensure the state secures adequate money, it's a far cry from North Carolina where you have 800 people on a waiting list, waiting for drugs," Lubinski says.
NASTAD's position is that states with chronic problems in HIV funding need more money, and the goal is to expand care and treatment in the United States, Hanen says.
"And if we're not getting more dollars, then we're going backwards," Hanen says.
What's really needed is a universal health care system, Lubinski says.
"If we had that, we wouldn't be having these struggles with Ryan White," Lubinski adds. "And given that most of these drugs were developed with federal leadership in this country, we wouldn't have a situation where not everyone in this country has access."
Optimism is difficult to muster these days, according to HIV providers and others who have dedicated their lives to helping HIV-infected Americans receive the treatment and care they need.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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