The ABCs of ADAPs
The Past, Present, and Future of AIDS Drug Assistance Programs
AIDS Drug Assistance Programs (ADAPs) provide access to critical, life-saving medications for low-income, uninsured, and underinsured people living with HIV/AIDS in each state. With almost 200,000 enrollees nationwide, ADAPs reach over a third of all people with HIV receiving care in the United States. To provide this access, ADAPs must continually maintain a balance between available resources and demand for services. This balancing act is becoming increasingly difficult, as ADAPs nationally are facing growing demand from the results of the economic recession and growing unemployment rolls, while receiving essentially flat federal funding and shrinking state contributions to the programs. A severe fiscal crisis is brewing which could impact access to HIV medications for thousands of uninsured and underinsured individuals living with HIV/AIDS.
In December, the National Alliance of State and Territorial AIDS Directors (NASTAD) reported that nine states (Arkansas, Iowa, Kentucky, Montana, Nebraska, South Dakota, Tennessee, Utah, and Wyoming) had ADAP waiting lists totaling 342 individuals. An additional 12 states are poised to implement new or additional cost-containment strategies such as reducing their formularies or lowering financial eligibility by the end of the fiscal year on March 31, 2010.
This is not the first national fiscal crisis for ADAPs. The programs were overwhelmed by demand with the introduction of combination highly active antiretroviral therapy (HAART) in 1996, which had not been anticipated by federal appropriators. Strong advocacy from the HIV community and irrefutable evidence of the cost effectiveness of HAART resulted in an infusion of federal funds for 1996 and several years of large budget increases which put ADAPs on a sound financial footing, enabling the programs to expand enrollment and formularies. However, by 2000, Presidential and Congressional focus on ADAPs had waned and subsequent federal budget increases fell to inadequate levels. ADAPs began once again to struggle. This time it was the states that came to the rescue. In 2003, a group of AIDS Directors and ADAP Coordinators formed the ADAP Crisis Task Force (ACTF) and engaged the drug industry in negotiations for lower drug prices and increased drug rebates. This effort has resulted in more than 800 million dollars in savings for ADAPs over the past six years. States also dramatically increased their state budget contributions to ADAPs during this same period, almost doubling from $171 million in 2003 to $328 million in 2008. ADAPs also benefited from the implementation of the new Medicare Part D drug program in 2006, which enabled them to shift some clients and costs to this federal entitlement program.
A convergence of factors has brought ADAPs back to fiscal crisis. The economic recession of the past two years has resulted in the loss of employment for many people living with HIV and with that comes loss of health insurance. Dramatic increases in health care costs in recent years have resulted in higher health insurance costs. This, in turn, has caused employers to drop health insurance. These national problems have increased the number of people relying on ADAP. At the same time, federal funding increases have remained inadequate, while state contributions have been cut as states grapple with their own budget crises. With reported overall state deficits in FY2009 of $113.2 billion, half of state ADAPs received reductions in their state contributions. The outlook for next year is even worse with anticipated state budget shortages in FY2010 totaling $142 billion.
ADAPs have limited means to balance resources and demand. There are three basic cost gateways for ADAPs: who is covered (eligibility); what is covered (formulary); and how much is paid for drugs. After several historical fiscal crises and years of lean times, ADAPs have trimmed and refined their programs so that there is little in the way of savings to be found by administrative means, and no easy answers. Cost containment options are typically considered with input from consumers and health care providers, and implemented only after a lengthy deliberative process that grapples with conflicting goals (access and savings) and the potential for unintended consequences.
Since ADAPs are funded to provide access to low income individuals, a frequent response to lack of funds is a proposal to lower the financial criteria for the program. There are two problems with this approach. First, the vast majority of ADAP clients nationally are very low income, with 89% making less than 300% of Federal Poverty Level (FPL). Thus lowering income eligibility, for example from 400% to 300% FPL, has limited fiscal impact. The second problem is that drug company patient assistance programs (PAPs), which are the final safety net after ADAPs, have their own income criteria. People in these "higher" income brackets can be left without any form of assistance and be unable to afford $1,700/month or more for a basic three drug combination. Establishment of a waiting list, with case manager assistance in applying for a PAP, has therefore become the option employed by most ADAPs in crisis.
Reducing the formulary has similar problems. Antiretrovirals are the highest priority for ADAPs and consume on average 89% of the budget for ADAPs. The remaining 11% is primarily expended for essential drugs to treat or prevent opportunistic infections, leaving only a small amount for important drugs that treat HIV-related conditions and the toxicity and side effects of antiretrovirals. Therefore, formulary reduction is, at best, a minor cost saving, but may have serious implications for the quality of life of clients.
The negotiations of the ADAP Crisis Task Force have reduced the cost of antiretrovirals for all ADAPs to the lowest prices in the United States, and are currently at levels that compare favorably to those achieved in Canada and the European Union through government pricing regulations. Further efforts to reduce costs are likely to target the drug distribution system and this can lead to tradeoffs between savings and limiting the places and means by which clients receive their drugs -- with implications for compliance and drug resistance.
There are some encouraging signs for the future. Health Care Reform (HCR), which is working its way through Congress, holds promise for easing the pressure on ADAPs. Buried in the bills are provisions that will further reduce drug costs for ADAPs and will enable ADAPs to better coordinate with and take advantage of the Medicare Part D drug benefit. Both of these would become effective in 2010 and would provide relief in the short term. Health care reform will also bring expansion of access to affordable health insurance and government entitlement programs (e.g., Medicaid), protections against discrimination by health insurers and loss of coverage, and a slowing of the growth of health care costs. These reforms all bode well for the long term prospects of ADAP, as does the turning of the corner on the economic recession. It will take time for the economy to return to normal and the creation of adequate new jobs for the millions who are unemployed, but ultimately a rebounding economy will provide government with increasing revenues, and, hopefully, some of those funds will find their way to ADAPs.
If you need access to HIV medications, it's a good idea to apply to ADAP, even if there is a waiting list. While the idea of being on a list can be discouraging, it documents the need for additional funding and will position you for enrollment when the fiscal situation changes. The application process will also likely bring you a referral to an AIDS service organization (ASO) and a case manager to help with applying to the appropriate patient assistance programs for the drugs that you require. ASOs can also provide support and access to services to address other needs that you may have.
All people living with HIV in this country have a right to the medications they need and a responsibility to be active in the political process that will ultimately increase ADAP funding. Letter-writing campaigns and visits to elected officials can make a difference in funding levels, and coordinated efforts can have the most impact. The HIV advocacy community constantly monitors the health of ADAPs and mobilizes when access is threatened, at both the state and national level. Individuals living with HIV/AIDS can assist in efforts to keep ADAPs open and meeting the need by becoming involved with their local AIDS service and advocacy organizations. These organizations can keep you informed about the status of your state ADAP and provide ways for you to work with others to increase resources and support for ADAPs.
In Illinois, contact the AIDS Foundation of Chicago, www.aidschicago.org. Most other states also have ADAP websites.
Lanny Cross served as the Program Director of the New York State AIDS Drug Assistance Program (ADAP) and the HIV Uninsured Care Programs for 15 years. He is currently a health consultant to various state and national organizations providing expertise and technical assistance on ADAP-related issues. E-mail Lanny at LTCross@nycap.rr.com.
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