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New Survey of State AIDS Drug Assistance Programs (ADAPs) Shows Waiting Lists for Medications Persist
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December 15, 2004
Washington, DC --
The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its latest ADAP Watch, a listing of AIDS Drug Assistance Programs (ADAPs) that have implemented or anticipate implementing cost containment strategies to maximize program resources and maintain fiscal viability (see attached NASTAD ADAP Watch for details). These strategies all have a significant impact on client access to life-saving medications.
With current program funding falling far short of meeting the demand of those in need, 813 people are currently on ADAP waiting lists in nine (9) states, awaiting access to life-sustaining drugs. On June 23, 2004, President Bush announced a plan to immediately provide one-time funding of $20 million to provide medications to people on ADAP waiting lists in ten (10) states (registered as of June 21, 2004). The program is being administered outside of ADAPs, with the Health Resources and Services Administration (HRSA) coordinating the program with the ten states (see attached NASTAD fact sheet on the Initiative for additional details). All but 55 of the individuals on the current waiting lists are slated to be covered under this Initiative and approximately 591 individuals have begun to receive medication under it.
In addition to waiting lists, which are only one indicator of fiscally constrained ADAPs, many states have instituted other cost-containment measures that limit access to HIV medications for low-income Americans. Only two of these states are eligible to receive assistance from the President's Initiative. Since April 2003, thirteen (13) ADAPs have initiated other cost-containment measures, including capped enrollment, limited formularies, lower financial eligibility criteria, monthly or annual expenditure caps, or cost-sharing. In addition, six (6) states anticipate the need to implement new or additional cost-containment measures during the 2004 ADAP fiscal year which ends March 31, 2005.
A teleconference call, hosted in conjunction with the Kaiser Family Foundation, will take place at 12:30 pm EST on Wednesday, December 15, 2004 to discuss this release as well as issues related to the President's ADAP Initiative.
The call can be accessed by dialing 1-800-311-9402 (Password ADAP). Presentation materials will be available at www.kff.org/hivaids/hiv121504pkg.cfm.
The overall future prospect of funding for ADAPs is bleak, as are the prospects for transitioning individuals from the President's $20 million Initiative into ADAPs when the funding runs out. "We are extremely troubled that there is no plan to continue to provide medications for these people on waiting lists," remarked Julie Scofield, NASTAD Executive Director. "This is an ongoing, severe crisis in which many states are struggling desperately to provide these life-saving medications to people in need. This one-time infusion of funds is greatly appreciated, but it does not solve the ongoing ADAP fiscal crisis. Unfortunately, programs will continue to make difficult decisions to keep programs solvent," Scofield added.
Federal funding for ADAPs has been insufficient to meet the needs of those eligible and has led to this fiscal crisis for many ADAP programs. The recently approved Consolidated Appropriations Act provided an increase of $38.7 million for ADAPs in FY2005. NASTAD is very concerned that this funding level provides only a small portion of the $217 million increase needed for ADAP programs, and provides no continuation of the $20 million funding in order to transition clients from the President's Initiative into ADAPs. There is no guarantee that individuals receiving medication through the Initiative will be covered by ADAPs when the FY2005 ADAP fiscal year begins on April 1, 2005. In addition, cuts have again occurred in other programs within the Ryan White CARE Act, including Title II grants which provide funding to states for other critical HIV/AIDS services. AIDS treatment policy experts have determined that a minimum of a $100 million increase is needed for ADAPs in FY2006 in order to alleviate restrictions and address the nation's ADAP crisis.
ADAPs provide HIV treatments to low income, uninsured, and underinsured individuals living with HIV/AIDS in all 50 states, the District of Columbia, the Commonwealth of Puerto Rico, the U.S. Virgin Islands, three U.S. Pacific territories (Guam, the Northern Mariana Islands, and American Samoa) and one Associated Jurisdiction (the Republic of the Marshall Islands). Each year approximately 135,000 people receive services from ADAPs, representing about 30% of people estimated to be living with HIV/AIDS in care in the U.S. ADAPs are a discretionary grant program funded through the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Because ADAPs are not entitlement programs, funding levels are not based on the number of people who need prescription drugs or the cost of medications. In addition to federal funding, ADAPs may also receive state general revenue support and other funding, but these other sources are highly variable and dependent on local decisions and resource availability.
AIDS Drug Assistance Programs (ADAPs) provide life-saving HIV treatments to low income, uninsured and underinsured individuals living with HIV/AIDS in all 50 states, the District of Columbia, the Commonwealth of Puerto Rico, the U.S. Virgin Islands, Guam, the Northern Mariana Islands, American Samoa, and the Republic of the Marshall Islands. Federal funding for ADAPs has been insufficient to meet the needs of those eligible and has led to ADAP access restrictions. Funding for FY2005 will be insufficient to provide needed treatments to all those eligible.
On June 23, 2004, President Bush announced immediate availability of $20 million in one-time funding, outside of ADAPs, to provide medications to people on ADAP waiting lists in ten (10) states (registered as of June 21, 2004). There are slots for 1,738 individuals who were on waiting lists in the ten (10) states as of the announcement. The number of clients enrolled in the President's Initiative in each state (as of November 22, 2004) varies from the original number of eligible clients based on new clients enrolling in ADAP, some ADAPs enrolling clients into their regular programs, clients that lost eligibility, or eligible clients who could not be located once the program was implemented. The program is administered by the Health Resources and Services Administration (HRSA) through a contract with Chronimed Inc., outside of the ADAP structure. Approximately 591 of the 1,349 individuals eligible for the Initiative have begun to receive medications. FY2005 for ADAP does not address continuation of this separate program and it is unclear how and/or whether states will be able to transition clients into their ADAPs when the program expires.
As of November 22, 2004, there are 813 individuals on ADAP waiting lists nationwide (including 758 individuals eligible for the President's Initiative). Nine (9) ADAPs currently report a waiting list (including four not covered by the President's Initiative). Thirteen (13) ADAPs have instituted capped enrollment and/or other cost-containment measures since April 2003. Six (6) ADAPs anticipate the need to implement new or additional cost-containment measures during the current ADAP fiscal year ending March 31, 2005.
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President Bush's $20 Million ADAP Initiative
What is the President's $20 million ADAP Initiative?
On June 23, 2004, President Bush announced immediate availability of an additional $20 million in drug therapies for ten states with AIDS Drug Assistance Program (ADAP) waiting lists as of June 21, 2004. The ten states eligible to participate in this program are: Alabama, Alaska, Colorado, Idaho, Iowa, Kentucky, Montana, North Carolina, South Dakota and West Virginia. The Health Resources and Services Administration (HRSA) within the Department of Health and Human Services is coordinating the program with the ten states, which is being administered outside of the regular ADAP structure. HRSA has contracted with a pharmacy benefits manager (PBM) to directly purchase and distribute the drugs to individuals on the waiting lists in the ten states.
What are the details of the President's ADAP Initiative?
As of November 22, 2004, details of the direct purchase program include:
• There were 1,738 slots initially available for the program, allocated only to the ten states by the number of individuals on their respective waiting lists as of June 21, 2004. At time of implementation, in November 2004, 1,349 persons were eligible for this Initiative (this lower number is a result of some ADAPs enrolling eligible clients into their ADAPs, some clients becoming ineligible, or some clients unable to be located, coupled with additional clients presenting for services). It is unclear whether or not new clients who join waiting lists in the 10 states subsequent to implementation will be allowed to join this program. • Chronimed Inc., a PBM, is administering this program for HRSA. Their contract runs from approximately September 29, 2004 to September 28, 2005, or until the money is expended, whichever comes first.
• Drugs are sent directly to the client or the client's physician by the PBM, with the ADAPs determining initial eligibility for the program.
• The PBM will only purchase drugs that were on the ADAP formularly in the client's state as of June 21, 2004.
• The drugs will not be purchased through the 340B program, the standard drug purchasing mechanism that most ADAPs utilize, or through other cost-saving mechanisms, although Chronimed has the authority to independently negotiate lower prices for these medications. It is believed these negotiations are underway with various pharmaceutical companies. Negotiated discounts, costs of administering the program and dispensing fees have not been disclosed.
• The distribution of the medications to eligible individuals began in November 2004. As of November 22, 2004, states report that 591 individuals have been processed to receive medications as part of this Initiative. HRSA reported on November 18, 2004, that 462 individuals had received 917 prescriptions. Chronimed has indicated a readiness to fill and ship prescriptions once the eligibility process is completed by the state ADAP and prescriptions are received and verified at Chronimed.
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