In politics there is a saying, "As goes Maine, so goes the Nation" that dates back to 1888, stemming from an age-old saying used to describe the state's reputation as a bellwether state in presidential politics. That year, Maine voted for the Republican nominee Benjamin Harrison who won the presidency despite losing the popular vote. In more recent years, Maine's political status has changed, giving way to Missouri and Ohio. Using that analogy as a backdrop, witnessing the AIDS Drug Assistance Program (ADAP) crumble as 8,785 people living with HIV/AIDS are denied access to their life-saving medications should cause alarm to anyone advocating for Ryan White programs.
During the 1990s when the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was passed, it was done so with strong bipartisan support. In fact, the late Sen. Edward Kennedy - the liberal lion of the Senate - was joined by one of the most conservative Republicans to introduce the legislation, Sen. Orrin Hatch. Every reauthorization since has also enjoyed the same level of bipartisanship. But while certain aspects of the Ryan White law have struggled to garner consensus, often falling victim to the ideological divide, ADAP and its funding always served as the model of how the two political parties could work together. In many respects, ADAP served as the bellwether program of the Ryan White law.
President Bill Clinton worked with House Speaker Newt Gingrich to ensure ADAPs were adequately funded because both leaders understood the Return on Investment (ROI) from a public health perspective. From 1995 to 1999, federal funding for ADAPs fared relatively well, as ADAP funding increased from $51.9 million to $460.6 million. But the last major influx of funds occurred in 2003, when Congress approved an increase of nearly $100 million. Since then, however, ADAPs have been perpetually underfunded at the federal level.
In August 2003, ADAPs were facing a similar funding crisis, albeit not equal to the scale faced today. The ADAP Working Group published its White Paper, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," in response to the crisis at the time when there were 509 people living with HIV/AIDS on ADAP waiting lists in 10 states. (1) It summarized ADAP's bellwether status very accurately:
"ADAP was generally well funded from FY ’96 through FY ’00 with active and open bi-partisan Congressional support. ADAP related crises did occur but tended to be a function of new programs, rapid scale up, State level resource needs, or local health care delivery issues. Underfunding on a serious nationwide federal level started in FY ’01 and continues." (2)
Fast forward to 2011, when ADAP waiting lists and other cost containment strategies are at record high levels. In fact, historically nothing compares to the crisis facing the nearly 10,000 people living with HIV/AIDS being adversely impacted by the ongoing ADAP crisis. During the last "major" ADAP crisis, ADAP waiting lists only pushed the upward levels of 1,400+ on waiting lists. Now, there are just shy of 9,000 on waiting lists, approximately another 1,000 kicked off the program (via eligibility changes) and states like Ohio are toying with medical criteria, which was once taboo.
ADAP wasn't immune from internal bickering over how to solve the crisis, as some national HIV/AIDS organizations were hesitant to publicly challenge longtime leaders, despite their failure to solve the problem. "The Politics of ADAPs" (3) provides an excellent historical analysis on why the current ADAP crisis should cause alarm for HIV/AIDS advocates fighting for other important programs, such as prevention.
Think back to the struggles...and failures...over needle exchange programs, or abstinence only sex education. When HIV/AIDS advocates were desperately trying to fend off attacks on proven prevention strategies from the religious right, ADAP was receiving millions of dollars in new federal funding. So, ADAP's ongoing fight to secure as little as $101 million dollars despite the overwhelming evidence and history of bipartisan support is troublesome because if a "popular" HIV/AIDS program like ADAP is facing increasingly tough times, how can other "less popular" programs expect to make needed gains?
The ongoing debate over federal appropriations is evidence enough. For Fiscal Year 2012, ADAP funding increases could be as little as $15 million despite the escalating crisis. Meanwhile, most other HIV/AIDS programs could look at level funding, or even damaging spending cuts. (4)
Carl Schmid, Deputy Executive Director of The AIDS Institute, best summarized the ongoing plight facing domestic HIV/AIDS programs:
"While we appreciate Subcommittee Chair Tom Harkin's effort to preserve existing programs, our Nation is not going to reduce new HIV infections or provide adequate care and treatment to low-income people living with HIV/AIDS without new resources. This is extremely disappointing since we have the drugs to keep people alive, the knowledge that treatment is prevention, along with a number of other tools that help prevent HIV, and the leadership by the Obama Administration as detailed in the National HIV/AIDS Strategy. Without the necessary resources, the goals of the Strategy will not be achieved, and thousands of more people in the United States will needlessly become infected with HIV." (5)
Until the HIV/AIDS community can find consensus on how to solve the ADAP crisis, it is hard to imagine how other important programs can receive the resources that they desperately need, too. As goes ADAP, so goes Ryan White programs.
(1) The ADAP Working Group, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," August 2003, p. 1.
(2) The ADAP Working Group, "The History and Status of the ADAP Funding Crisis; The Current ADAP Crisis status as of Month #5 of the FY ’03 Funded Program Year," August 2003, p. 3.
(3) ACHIEVE, "The Politics of ADAP," Fall 2008, p. 11.
(4) U.S. Senate Committee on Appropriations, "Summary: FY12 Labor, HHS, and Education Appropriations Bill," September 21, 2011.
(5) The AIDS Institute, "Senate Flat Funds Most Domestic HIV/AIDS Programs," September 22, 2011.