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With Costs Rising, Could the AIDS Drug Wait List Crisis Reach New York?

Posted by , July 07, 2010 at 9:06pm

With Costs Rising, Could the AIDS Drug Wait List Crisis Reach New York?

New York’s ADAP budget is shrinking as enrollment grows.

Two weeks ago the number of poor Americans on waitlists for AIDS medication hit a historic high.

As of this week, more than 2,000 people with HIV/AIDS are waiting for critical, potentially lifesaving, medication. Byproducts of the foundering economy, the wait lists to enroll in AIDS Drug Assistance Programs—state-run programs that provide medication to uninsured or underinsured people with AIDS—had been concentrated in the South. The ADAP crisis has ballooned, however, and states around the nation are cutting costs as they adopt ever-smaller budgets.

This month in New Jersey, 967 people will receive a letter explaining that the state can no longer afford to subsidize their HIV-related medical treatment, and they will have to scramble to find some other way to pay for thousands of dollars in medication.

Traditionally, New York has had one of the most efficient and expansive ADAPs in the nation. But other states with once-heralded AIDS Drug Assistance Programs have succumbed to the most recent crisis. Florida, once praised for its program, now has a waiting list that tops 500 people.

All of which raises the question: With New York facing a multibillion-dollar budget gap, is the state’s ADAP at risk?

The National Crisis: A “Perfect Storm”

Created in 1987 and jointly funded by federal and state governments, ADAPs provide free medication to low-income, uninsured or under-insured HIV-positive individuals. In 2009, 77 percent of those served were at or below 200 percent of the federal poverty level.

Each state administers its own ADAP, and eligibility requirements—as well as which drugs and services the program pays for—vary widely by state. Because treatment sometimes prevents people with HIV or AIDS from working, and because medications cost an average of $12,000 a yeas, these programs have often been critical safety nets for those in low and mid-income brackets.

But the troubled economy, coupled with an increased demand for medication, has tossed ADAPs into crisis. Nationwide, the number of unemployed, uninsured and underinsured, has increased since 2008. At the same time, states are struggling for revenue and chopping programs across the board.

Combined with national efforts to encourage HIV-testing, as well as recent scientific recommendations that HIV-positive individuals start treatment earlier, ADAPs are facing “the perfect storm,” said Brandon Macsata, CEO of the ADAP Advocacy Organization.

But the wait lists (see the most recent wait list counts) are just the tip of a much larger problem. Rather than create lists, some states are simply raising the threshold of who they serve or limiting the drugs that they cover.

Kathy Ahearn-O’Brien, executive director of the Hyacinth Foundation in New Jersey, points to what happened this week in her state: On July 1, facing its smallest budget in five years, New Jersey changed its ADAP eligibility from 500 percent of the poverty level to 300 percent. Nearly 1,000 people will be slashed from the ADAP roll.

“You’ve got a budget crisis, you’ve got a governor under pressure, we just couldn’t get traction on the AIDS issue,” she said.

New York’s Growing ADAP Burden

Ahearn-O’Brien has already received calls from colleagues across the Hudson, asking if similar cost-cutting could happen in New York.

So far, the Empire State has “been able to hold its own,” said Beth Crutsinger-Perry of the National Association of State and Territorial AIDS Directors (NASTAD), paying for its ADAP without making cuts.

The state has a generous formulary (or list of drugs that it covers) that includes 465 medications—far more than any other state (note that some have open formularies). It sets the ADAP eligibility level at 406 percent of the federal poverty level (which in 2009 was $10,830). That level is much higher than many states, some of which set eligibility at 200 or 300 percent. And New York has been able to stay efficient by arranging discount rates with drug companies.

Claire Pospisil, spokeswoman for the New York State Department of Health, says that her state has no plans to make changes that will cut people from its ADAP or reduce the services for which it pays. Indeed, New York has continued to give make its ADAP a priority: Nearly 95 percent of the Ryan White federal funding the state received this year went to ADAP.

But because it’s so generous—and because so many people in New York are HIV positive, the state’s ADAP also faces a huge burden. New York City has the highest number of HIV-positive individuals of any city in the nation. In June 2009, New York’s ADAP had 18,295 people enrolled, up from 18,034 in the same month in 2008, according to NASTAD.

It also filled 22 percent more prescriptions in June 2009 than in June 2008, and spent 7 percent more on drugs.

At the same time, New York’s ADAP is shrinking: Including funding from both state and federal governments, the budget was $257 million in fiscal year 2009, down from $260 million in 2008.

Which means that in New York there’s reason to be on alert, at the very least, said Macsata.

“Florida has also traditionally been a model state for funding its HIV/AIDS programs,” he said. On June 24, that state had 361 individuals on its ADAP waitlist. On July 1 that number jumped to 523. Like New York, “Florida also escaped waitlists during [a previous] ADAP waitlist crisis, but increased use of ADAP, the economy, unemployment … I don’t think any state is out of this crisis.”

On Friday, NASTAD will release the most recent ADAP wait list numbers, as well as a list of cost-cutting measures made in programs around the nation.

“We have built a very strong system here in New York,” said terri smith-caronia, Housing Works vice president for New York advocacy and organizing. “Let’s just keep watching over it.”

What Others Are Saying

AIDS Activists Head to the Hill to Save ADAP, The Bilerico Project
New Crisis? Gap in HIV/AIDS Drug Assistance Risks Return to Bad Old Days, The Syracuse Post-Standard
ADAP S.O.S., POZ Magazine
Economy Hurts Government Aid for H.I.V. Drugs, The New York Times

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