Partisan gridlock contributes to HIV/AIDS prescription wait lists

At least 77 Iowans are among more than 1,000 people in 10 states who have tested HIV positive but have been placed on a waiting list for access to life-saving prescriptions.

The AIDS Drug Assistance Program (ADAP), a portion of the Ryan White CARE Act, provides medications to uninsured and under-insured people living with HIV and AIDS. The program is a pharmaceutical provider of last resort, and has been severely crippled in the past decade by increased need and stagnant federal funding.

Funding for the current fiscal year is expected to maintain the program through April 1, 2011. But at least 11 states have already been forced to implement or announce waiting lists. Both Republicans and Democrats in Congress agree that additional funding is needed, but can’t agree on a source for the funds.

And unless Congress is able to break partisan gridlock and provide emergency funding for the program, advocates fear many more states — some estimates go as high as 25 — will institute waiting lists.

“The economy is, of course, playing a role in this current crisis,” said Brandon M. Macsata, chief executive of the ADAP Advocacy Association. “You have people losing work, and having to find alternative methods of accessing care. State budgets are also under serious pressure.

“But what is really of concern to us is that the federal share of ADAP spending has dropped dramatically from about 74 percent to roughly 52 percent. So, as far as we are concerned the federal government is not living up to its responsibility for this important program.”

Nearly 80 members of the U.S. House, including Iowa Democrats Bruce Braley and Leonard Boswell, signed a May 19 letter to President Barack Obama, requesting that he call for an emergency funding infusion into the program of $126 million.

Despite the rapid clip at which HIV infections continue to spread, the Congress has failed to enable The Ryan White CARE Act to grow apace with the epidemic and ADAP has been severely underfunded. … The public wait list is only the tip of the iceberg and remains a very last resort for most states, often times preceded by reduced formularies and cuts to eligibility levels in order to avoid the creation of a wait list. By policy some states do not allow the public to see an official ADAP waiting list.

Because so many states are already implementing cost-saving measures, the congressional letter said, “It’s abundantly clear that without emergency action the ability for ADAP programs to provide a safety net … will be seriously damaged.”

“Congress is getting ready to pass two emergency supplemental [appropriation bills] to the tune of $197 billion dollars, and all we are asking for is $126 million,” said Macsata. “There has been push-back from both levels. The Republicans have been reluctant to approve emergency supplemental funding that isn’t otherwise paid for — what is referred to in Washington as pay-as-you-go. … The Democrats are saying, no, we need to just go ahead and appropriate it. But because they can’t agree, nothing is getting done on this.”

Specifically, Republicans in Congress would like to see stimulus monies, whether earmarked or not, be used to cover shortfalls within ADAP.

On Monday, Republican U.S. Sens. Tom Coburn of Oklahoma and Richard Burr of North Carolina introduced a bill that would direct $126 million in unobligated stimulus funding to the U.S. Department of Health and Human Services, in order for her to address the waiting lists and other cost-containment measures that have been implemented by state ADAPs. The move was praised by Michael Weinstein, president of AIDS Healthcare Foundation, who encouraged Democratic senators to quickly sign-on and approve the measure.

“These funds will directly and immediately save lives,” Weinstein said. “Just last week, a person on an ADAP waiting list in South Carolina died because they could not access lifesaving antiretroviral drugs. As far as we are concerned, this is stimulus; people with HIV/AIDS who get their lifesaving drugs can continue to work and be productive.”

In April, Coburn and Burr cooperated with Republican Sen. Mike Enzi of Wyoming to send an inquiry letter to U.S. Secretary of Health and Human Services Kathleen Sebelius. In that letter the trio suggested that $9.5 million in stimulus funding earmarked for renovations in a California AIDS office be used for ADAP, and requested that Sebelius answer three questions related to the crisis, the department’s statutory authority to use existing funds and possible use of other stimulus monies. A spokesman in both Enzi’s and Burr’s office confirmed Tuesday that Sebelius or no member of her staff had yet provided a response to the letter.

“What we have, once again, is the parties coming at this from two different angles instead of sitting down together and coming up with a solution to the crisis, they are both digging in their heels,” Macsata said. “Meanwhile, these waiting lists continue to grow — here, in the richest country in the world, we have people waiting to access medications that we know keep them healthy, keep them out of the emergency room and make them productive members of society.”

Because of the ongoing and worsening crisis, the ADAP Advocacy Association will be asking individuals across America to contact their representatives in Congress and urge them to take action that will end the waiting lists.

“This is a bipartisan issue — HIV does not discriminate,” Macsata said. “This has typically been an issue that has received bipartisan support — and I think there still is bipartisan support, but I also think there is toxicity in Washington, D.C. that is in play. [This need] is getting caught up in the partisanship, and that is a shame. We hold both parties equally accountable.

“We are demanding action from the president and Congress. Whatever it is that you have to do, just come to an agreement and help the nearly 1,100 Americans that are waiting to access the medications we know will keep them healthy and productive.”