When The Money's Gone.......

Frightening news.

The AIDS Drug Assistance program [ADAP] that provides life-sustaining antiretroviral drugs to people with HIV or AIDS who cannot afford them, has lost all of it's funding. Now, some 1800 people who rely on ADAP for their medications are on waiting lists and, without reliable access to the medications HIV+ people are more likely to develop full-blown AIDS, transmit the virus and require expensive hospitalizations.

Eleven states, including South Carolina, have closed enrollment in the federal program; Florida, with the nation’s third-largest population of people with HIV is the latest state to lose all ADAP funding. Three other states have narrowed eligibility, and two of them--Arkansas and Utah--have dropped scores of people from the program.

Last week, the nationwide waiting list grew beyond the previous record levels of 2004, and the growth is expected to continue when Georgia starts deferring enrollment in ADAP on July 1. Illinois may soon follow, and New Jersey plans to cut eligibility on August 1, removing 600 of the 7,700 people on its rolls. In many states, there is a sense of reverting to the 1980s and early 1990s, before the development of protease inhibitors reversed the rise in AIDS deaths.

“The worry then was that there were no medications for AIDS,” said Dr. Wayne A. Duffus, medical director of the drug assistance program in South Carolina. “The worry now is that there are medicines, but you can’t afford them. A lot of patients are certainly old enough to remember what happens if you don’t get your medicines.”

We have the medications, but we have cut funding so people cannot receive them.

Still, there is some hopeful news: pharmaceutical companies have stepped into the breach, negotiating discounts for the state drug plans and accepting needy patients into programs that temporarily provide free medications. Although there is no data to prove it, state AIDS directors believe a vast majority of people on waiting lists seem to be getting medications one way or another, though they do concede that some patients may be going without, and that caseworkers are being forced to navigate cumbersome applications seeking drug companies’ help.

“The drug companies are trying their best to lower prices,” said Carl Schmid, deputy executive director of the AIDS Institute, an advocacy group. “But we cannot rely on them to finance the health care of poor people living with HIV and AIDS.”

Dr. Helmut Albrecht, director of the infectious diseases program at the University of South Carolina School of Medicine, said he knew of one wait-listed patient who had died after a seizure while awaiting approval from drug company programs. “In my world, there is never a certainty if meds would have prevented [that] death,” Dr. Albrecht said, “but the fact remains that the wait certainly did not help.”

Drug assistance has grown in the last fifteen years to become the largest component of the federal Ryan White program, which provides grants to states and localities. The drug program’s budget from all sources is now $1.6 billion, with Washington contributing about 55 percent, states offering 14 percent and drug company rebates accounting for 31 percent.

And there are a variety of reasons for the strain on finances within the program. ADAP enrollment has spiked during the recession, up 12 percent from June 2008 to June 2009, to about 169,000 people. A renewed emphasis on testing is also driving up caseloads, and federal treatment guidelines now recommend an earlier start to drug therapy. Because the drugs are so effective, people often stay on the rolls for extended periods.

Meanwhile, federal financial support has stayed essentially flat, up barely 2 percent this year, while appropriations from state budgets have fallen 34 percent, according to the state AIDS directors. The drug companies increased their contribution by half, to nearly $500 million, but it is still not enough.

Once fully implemented in 2014, the new health care law is expected to close the gaps by expanding Medicaid, subsidizing private insurance and requiring insurers to cover pre-existing conditions, but how many lives will be lost to waiting lists by then?.

Strangely enough, two two Republican senators, Tom Coburn of Oklahoma and Richard M. Burr of North Carolina, have proposed redirecting $126 million from stimulus spending to the drug assistance program. But President Obama opposes taking money from stimulus projects, and says he is “working to ensure” that the program gets adequate financing. Obama has recommended a $20 million increase in next year’s drug assistance budget. But what about the $126 million available now; it's simply sitting there, left unused by stimulus programs.

Obama, who ran for office on an LGBT fierce advocate platform, is looking less and less fierce these days; and will be looking even worse, as, perhaps will happen, more people contract AIDS, are hospitalized, and left unable to pay their bills.

I would ask everyone to write to theis congressional represenatives, and to the President, asking them to rethink the spending of this "unobligated" stimulus money, while they work toward guaranteeing an increased budget for ADAP and similar programs in the future. It is unconscionable that we put Americans on a waiting list, when we have the medications and the money available to help them now.