Cuts in ADAP a major blow to AIDS patients

Geoff Holtzman Deputy Bureau Chief, Talk Radio News Service
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Imagine being gang-raped. Imagine the pain it causes, the shame it inflicts and the endless trauma it bears. Now, imagine being told just months later that you’ve contracted HIV as a result. This is the story of Elizabeth Shepherd.

In 1997, Shepherd was raped by five African-American men in Charleston, S.C., who allegedly targeted her because she was white. Shepherd was admitted to a local hospital where she was treated for multiple injuries. Having suffered severe physical and mental trauma, Shepherd was in critical condition, and in no position to deal with bad news. But then, her doctors told her that the men who had raped her all had AIDS.

“I was in the hospital for four months,” she told me. “During that time the doctors came to me and told me that those five strains of AIDS were growing inside me to create one, new, mutated monster.”

The news got even worse for Shepherd. Six months after she was released from the hospital, a test confirmed that, in fact, she was HIV-positive. However, due to limited resources, the state of South Carolina informed her that she would have to be put on a waiting list for any life-saving treatments. Imagine…you’re told you have a disease that kills millions each year and there is nothing you can do.

“Without any medications people get depressed and dismayed,” she said. “They start feeling hopeless.”

For two years, Shepherd remained on that waiting list, fully aware that her health could immediately deteriorate at any moment. But in 1999, Shepherd finally received a slimmer of good news. The state had received enough funding that year to expand its AIDS Drug Assistance Program, or ADAP. Shepherd was off the wait list, and on her way to securing medicine she previously could not afford. On average, most Americans that are diagnosed with AIDS live anywhere between one and ten years. 13 years after learning she was HIV-positive, Shepherd is not only still alive, but has transformed herself from a junkie to a working, college-educated citizen who is making a positive impact on the lives of others.

Shepherd likely owes her life to ADAP. And she is not alone.

The program, created in 1987 and then incorporated by Congress into the Ryan White Care Act three years later, has provided hundreds of thousands of low-income Americans with HIV and AIDS, access to affordable treatment drugs.

Under the rules of ADAP, states are granted the authority to establish and manage their own individual programs, using a mix of federal HHS funds as well as money from their own budgets to pay for them. In addition, organizations like the Community Access National Network and the ADAP Advocacy Association have donated annually to keep the programs healthy.

A report done by the Kaiser Family Foundation three years ago determined that the total budget of the program, which was active in all 50 states, amounted to 1.4 billion dollars in 2007. During that year, the program provided treatment or coverage to 102,000 Americans, a figure representing roughly 30% of those infected with HIV in the U-S. However, a rise in that number coupled with one of the worst recessions in the country’s history has rendered some states unable to match their supply of medication with the demand of those in need. Moreover, as Congress grapples with ways to cut spending, the share of HHS dollars earmarked for ADAP has gradually decreased in recent years.

Bill Arnold, who directs the National ADAP Working Group, says the federal contribution has shrunk by almost 25% over the last decade. Arnold argues however, that expanding deficits and mounting pressure on Congress to cut spending aren’t enough of an excuse to neglect those who rely on the program.

“We may not be thrilled about some costs for some people or some medicines, but we have them,” he said. “Not providing access to them generates genuine risk to health and life.”

Right now, the lives of hundreds of HIV and AIDS-infected Americans, unable to pay for live-saving medications, are in severe jeopardy over Congress’s inability to extend funding for ADAP. In June, the number of Americans on state waiting lists topped 1,400 for the first time ever, with almost 300 new names being added last week ALONE. Congress, says Arnold, has an obligation to find a way to help these people.

“Morality says you find the medicine, ethics says you find the medicine, and medical ethics says you don’t cut off the medicine once somebody’s on it.”

So, how much cash are we talking about to help patients get the treatment they need? One hundred twenty-six million. That’s million, with an “M.” I repeat: $126 million is the difference right now between potential life and death for hundreds of people. Now, for a man or woman earning 30,000 dollars a year, struggling to pay the rent, that may seem like a substantial amount. But consider this: A report put out by the Heritage Foundation makes that figure look like a drop in the bucket compared to the amount of money the federal government wastes each year. For example, in 2008, the federal government made at least $72 billion worth of improper payments, and in 2009, it spent $25 billion to maintain vacant or unused properties. Additionally, that same report found that the refusal of many federal employees to fly coach costs taxpayers $146 million annually in flight upgrades. Recouping those dollars alone would be enough to keep ADAP going for DECADES.

Fortunately, some on Capitol Hill have taken note of the problem, and are proposing doing something about it. A bill introduced last month by Republican Sens. Richard Burr of North Carolina, and Tom Coburn of Oklahoma, would use unobligated Recovery Act dollars to fund ADAP through the rest of 2010. The measure has broad support in the Senate, but not yet in the House, where companion legislation would be needed. Unlike Burr, Coburn, and Florida Republican George LeMieux, House Republicans have been reluctant to back any bill attached to stimulus money. Even Congresswoman Ileana Ros-Lehtinen, who was given a sparkling grade by the ADAP Advocacy Association for her efforts to combat AIDS, has not yet endorsed the bill. Across the aisle, Democrats are withholding support, happy to score cheap points by exploiting the GOP for prioritizing politics over the health and well being of over 1,400 people at risk.

Shepherd says her lobbying efforts have fallen on deaf ears of members concerned more with getting re-elected than saving lives.

“I found no interest, nobody’s interested. All I found was politics,” she said. “Nobody’s interested in putting a dime in, or doing anything.”

To secure funding, Arnold says he’s tried going directly to the administration, but to no avail.

“There have been letters to [HHS Secretary Kathleen] Sebelius, there have been letters to the President. There has been no response to any of these letters.”

Arnold is holding out hope that this lack of acknowledgment has more to do with federal officials simply not yet having a plan in place to deal with ADAP than it does with them being impartial to the plight of a minuscule percentage of the population. Still, to people like Shepherd who have lived through the hardship of uncertainty that comes with being stuck on a waiting list, the current stalemate in Washington gives her an all-too familiar feeling.

“We are stuck with no help. It looks like there is no help at all.”

Geoff Holtzman is a Capitol Hill correspondent with the Talk Radio News Service. Previously, he worked as a producer for WMAL in Washington. Geoff is a lifelong resident of the Washington, D.C. area, and earned a degree in Broadcast Journalism from the University of Maryland.