After Five Years, ADAP Waiting Lists Have Been Eliminated; Unmet Need and Funding Uncertainties Require Continued Commitment
FOR IMMEDIATE RELEASE
Contact: Murray Penner
November 25, 2013, Washington, DC – According to NASTAD’s latest ADAP Watch, released today, there are no individuals on AIDS Drug Assistance Program (ADAP) waiting lists in the United States. This represents a significant milestone as there have been individuals on ADAP waiting lists since January 2008. The last state to have a waiting list, South Dakota, was able to transition the remaining 11 individuals on their waiting list into their ADAP program on November 21. Earlier this month, Alabama and Idaho eliminated their waiting lists and lifted their enrollment caps.
While the elimination of ADAP waiting lists is good news, the U.S. Center for Disease Control and Prevention (CDC) estimates that only 28% of the more than one million individuals in the U.S. who are living with HIV/AIDS are getting the full benefits of treatment (i.e., undetectable viral loads). That means 72% of individuals are not yet in care or receiving the full benefits of antiretroviral (ARV) treatments. In addition, and as a result of the previous fiscal crisis, many ADAPs have reduced and/or eliminated some services and lowered financial eligibility levels. These reductions in services have limited the number of clients that can be enrolled and sometimes limited which medications they can receive. These limitations and the large number of individuals not on ARV treatment represent a large unmet need that is not captured in the number of individuals on ADAP waiting lists. It is for this reason that continued funding and pricing stability are critical moving forward in order for ADAPs to maintain services and enroll new clients who are in need of ARV treatment.
The federal government is currently funded under a FY2014 continuing resolution (CR). This CR funds the federal government at FY2013 post-sequestration spending levels through January 15, 2014. Unless Congress provides an alternative to the sequester put in place under the 2011 Budget Control Act, further cuts may occur January 15, 2014, likely under another CR. These potential cuts could lead to states reinstituting waiting lists and implementing other cost containment measures.
The elimination of ADAP waiting lists was possible in part due to ADAPs’ receiving FY2013 Emergency Relief Funds (ERF). FY2013 ERF consisted of a total of $75 million distributed to states that demonstrated financial need as a result of waiting lists or other cost-containment measures. Despite sequestration cuts to ADAP formula funding awards in FY2013, ERF funds allowed ADAPs to maintain their provision of ARV medications to individuals in need. In addition, continued supplemental rebates and discounts and price freezes on medications negotiated between the ADAP Crisis Task Force and pharmaceutical companies allowed ADAPs to maintain stability in their expenditures.
There have been two periods in the 23 year history of ADAPs when waiting lists have existed as a means of cost-containment for fiscally constrained programs. The first waiting lists appeared in 2002 and lasted for nearly five years. Shortly thereafter, NASTAD convened the ADAP Crisis Task Force in order to negotiate supplemental rebates and discounts with pharmaceutical companies to help alleviate the crisis. The second period of waiting lists began in 2008, with significant increases occurring in 2010 mainly as a result of the nation’s economic recession. ADAP waiting lists reached an all-time high of 9,298 individuals in September 2011. The number of states with waiting lists fluctuated throughout both periods, with a high of 13 states having waiting lists in place.
Each crisis period ended in part as a result of presidential initiatives creating new emergency funding opportunities for ADAPs. President George W. Bush provided $20 million in emergency funding in FY2004. President Obama has provided $35 million for the past three fiscal years in ERF, despite difficult fiscal conditions, in an effort to eliminate existing waiting lists and prevent additional cost containment measures, including waiting lists.
ADAPs play a critical role in providing ARVs to people living with HIV/AIDS most in need. Seventy-eight percent of ADAP clients have incomes at or below 200% of the Federal Poverty Level (FPL), or $22,980, including 59% at or below 138% of FPL ($15,856), the eligibility threshold for Medicaid expansion under the Affordable Care Act (ACA). In 2011, approximately 206,000 individuals received services from ADAPs, representing about 19% of those estimated to be living with HIV/AIDS in the U.S.
ADAPs are a discretionary grant program funded through the Ryan White Program. Because ADAPs are not entitlement programs, funding levels are not based on the number of people requiring prescription drugs or on the cost of medications. ADAP enrollment is never static. In addition to federal funding, many ADAPs also receive state general revenue support and other funding, but these sources are highly variable and dependent on local decisions and resource availability.
Founded in 1992, NASTAD is a nonprofit national association of state and territorial health department HIV/AIDS program directors who have programmatic responsibility for administering HIV/AIDS and viral hepatitis health care, prevention, education, and supportive services programs funded by state and federal governments. For more information, visit www.NASTAD.org.
About the ADAP Crisis Task Force
The ADAP Crisis Task Force was formed in December 2002 by NASTAD and a group of state AIDS/ADAP directors concerned about the fiscal crisis facing ADAPs nationwide. The Task Force works in partnership with manufacturers of ARV and other HIV-related medications to reduce drug costs and improve access to medications for clients in the nation’s ADAPs. It is estimated that Task Force agreements with companies have saved ADAPs approximately $1.8 billion since 2003. NASTAD provides logistical support to the Task Force.