Forum: HIV care costs an emerging crisis

The average Medicare reimbursement per patient, per year for treating a person with HIV is $359. "That covers physicians, nurses, rent, utilities, social workers, you name it. How are we [providers] supposed to survive?"
Dr. Michael Saag asked that question at a national forum for HIV care providers meeting in Washington, D.C., on Aug. 30. He said the figure was calculated from records at the HIV clinic that he leads at the University of Alabama at Birmingham.
The government pays for the vast majority of care and that level of reimbursement is just too low. "One can't make it as an HIV care provider – unless they are lying and cheating – with that reimbursement." Saag predicts, "You won't see many HIV docs doing HIV private practice care five years from now, it will all be in publicly funded clinics."
He called it "an emerging crisis in health care delivery for HIV; patients not being able to get access to care."
Drawing upon data from his clinic over the last 10 years, since the introduction of highly active antiretroviral therapy (HAART), Saag calculated that the average patient with a CD4 count less than 50 costs $36,532 a year to treat, while the average patient with 350 or more T-cells costs only $13,885. "Patients with CD4 counts less than 50 cost 2.6 times the health care dollars as those with CD4 counts greater than 350." The cost of HAART is relatively constant across the CD4 counts, the big difference is the expense of other medications.
He says about half of the people who start HAART with a CD4 count of 50 or less died within eight years. "Only those people who start with CD4 counts above 200 are gaining the genuine benefit of what I hope is a normal life expectancy from HAART."
Unfortunately, the median CD4 count of a patient appearing for the first time at the clinic in Birmingham is 150; three-quarters have less than 200 CD4 cells. "The one exception is pregnant women, their median CD4 count is 400." That is because opt out testing for HIV is offered to all pregnant women as part of standard medical care. It has made Saag a proponent of increased testing.
The Centers for Disease Control and Prevention (CDC), after much public discussion is expected to announce later this month a new set of guidelines making testing for HIV a more routine part of regular medical care in all settings.
The anticipated changes continue to draw opposition from some corners of the AIDS advocacy community who fear they will lead to inadequate counseling and linkage to HIV services.
Those concerns are legitimate, but one should also note that many of these organizations and individuals depend upon existing grants and contracts for HIV counseling and testing to support their operations. Those funds are likely to shrink or disappear under the new policy.
"Expenditures for physician/clinic costs are less than 2 percent of the annual total expenditures for health care for an HIV patient. But what good are medications if there are no providers to provide care?" Saag asks.
He argues, "Treating a patient with HIV is hard to do well and it is easy to mess up. You need educated, well-versed practitioners. If they aren't there, the medications are going to be misused and we are going to have a health care crisis of resistant virus that you can't imagine."
Funding for the Ryan White CARE Act has been largely flat over the last four years, with almost all of the increases going to the AIDS Drug Assistance Program (ADAP). Saag says that is because "almost all of the lobbying effort has come from pharma saying, we are providing medicines, we'd like to get paid for it. There has been nobody from the care providers standing up on Capitol Hill saying, we're providing service, we'd like to get paid for that."
"Our funding has been flat-funded for the last seven years; we got a 2.6-percent cut last year, and we have a 60-percent increase in patient volume over the last five years. There have been salary increases and new lab tests that we have to pay for. We run an annual deficit of $1.1 million. How are we supposed to survive?"
"With more universal testing, I predict a 50-percent increase in patient volume over the next year to year and a half. Who is going to take care of these folks? We're at capacity; we're beyond capacity."
Saag is calling for "a dramatic increase in funding to increase clinic capacity. That has to come from Title III…Without qualified HIV care providers and clinics, HIV drugs mean nothing."
He says, "The safety net is made up of the fabric of health care providers who give a damn; that is the bottom line. When people come to my clinic and can't get medicines, social workers, nurses, sit on the phone with Medicare Part D prior authorization, into the wee hours of the night, because they give a damn."
"I think there is abuse of health care providers of that safety net. We are abused, we are taken advantage of by a system that doesn't recognize what is holding this country's health care delivery together. It is simply health care providers who give a damn. And god help us when those folks burn out and leave, I don't know what is going to happen."
"Ryan [White] couldn't get access to drugs, they were not available" in the 1980s, his mother, Jeanne, told the forum. She praised the gay community and ACT UP for helping to change that. "We have the drugs now. But people need to be paid…I don't know what it is going to take to raise our voices again, but we have to do it.
"We need a rebirth of advocacy, but with all of us as partners because of the way that the epidemic has changed." said "Frank Oldham, executive director of the National Association of People With AIDS (NAPWA). "If we don't access care, we will have a symbolic repeat of Hurricane Katrina."