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ADAP: Not All Is Rosy in the USA

By José M. Zuniga

June 2003

Jose M. Zuniga

In regard to the global fight against HIV/AIDS, the popularly held understanding is that of a dichotomy. HIV-positive patients in economically developed countries, such as the United States, have access to antiretroviral therapy (ART) and, though this treatment is imperfect and not a cure, patient life is greatly improved and extended. On the other side of the dichotomy are people living in economically developing countries who have little or no access to ART, contributing to tremendous HIV morbidity and mortality rates.

There is, of course, a good deal of truth in this understanding. In wealthier countries, and even ones that do not guarantee healthcare as a civil right, such as the United States, programs have been established to purchase HIV treatment for the medically indigent. In poorer countries, these programs rarely exist, or are entirely out of scale with the problem. Within this generalization, however, there are sizable gray areas. In fact, U.S. physicians attending the IAPAC Sessions 2003 (held May 15-16, 2003, in Chicago) discussed increasing economic impediments to HIV treatment in the United States. There is, in fact, a confluence of forces working to decrease the level of care available to HIV-positive patients in the United States just as the Bush Administration is gaining international attention for its measures to appropriately increase assistance to 14 African and two Caribbean countries struggling to contain their AIDS epidemics.

Since 1987, with the first government appropriation of funds to assist with the purchase of AZT, HIV patients within the United States have gradually come to benefit from increasingly equitable access to life-saving and -enhancing drugs to combat HIV and associated infections and complications. This was greatly accelerated through the enactment in 1990 of the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act and its drug access provision through Title II, which is most commonly known as the AIDS Drug Assistance Program (ADAP).

The congressional "earmarking" of funds for ADAPs is the fastest growing component of Ryan White CARE Act appropriations. Indeed, according to the U.S. Health Resources and Services Administration (HRSA), federal funding for ADAP has increased 1,000 percent since the original appropriation seven years ago -- from US$52 million in 1996 to US$639 million in 2002. In fact, total ADAP spending is higher since most state ADAP budgets are augmented by funding from their respective states, as well as from other Ryan White CARE Act programs, and through cost-saving strategies. In short, ADAPs have become essential vehicles in ensuring that uninsured and underinsured HIV-positive patients in 50 states, the District of Columbia, and five other jurisdictions gain access to myriad HIV-specific and -related drugs, as listed on individual state formularies.

Despite evidence of the essential role played by ADAPs in ensuring treatment to many of the 800,000-plus citizens of the United States who are currently living with HIV/AIDS, recent anecdotal evidence and testimony from across the country suggests that we are beginning to see a decaying of this safety net. While sheer U.S. investment in ADAP has increased each year since the program's inception, various demographic shifts in HIV/AIDS incidence and prevalence over the past several years, in addition to various proposals to amend conditions for access to ADAP formulary drugs in several states, appear to be already having a marked impact upon the effectiveness of the ADAP system.

Overall, the minutiae of government funding for national, state, and local HIV/AIDS programs is a picture of confusion, fully discernable to a minority among those who work within and/or benefit from this broad system comprised of funding from the Ryan White CARE Act, Medicare, and Medicaid programs. Yet some sense of the current state of ADAP may be gleaned from cross-analysis of statistics pertaining to many of the communities deriving the most benefit from ADAP. Although examples of the gaps which are becoming evident in coverage provided by state ADAPs are witnessed across all racial, ethnic, and gender categories, the most evident example is seen within the African-American community.

HIV incidence within the African-American community, particularly among heterosexual women and men who have sex with men (MSM), has been on the rise each of the past several years. As such, the increased numbers of those infected within the African-American community when considered in combination with the disproportionate reliance of African Americans upon subsidized healthcare such as ADAP, have resulted in a burden on the system that has not been met with an appropriate increase in resources from either state legislatures or the federal government.

Additionally, while 2002 and early 2003 statistics on HIV incidence within the United States remain unclear, it is reasonable to assume that if rates of infection among many populations that have depended most on ADAP remain constant or are increasing, then the modest 8 percent increase in U.S. government appropriations for ADAP from fiscal year 2002 to 2003, combined with increased numbers of patients depending on ADAP, and the almost annual addition of new antiretroviral drugs, paint a troubling picture. Further disconcerting is that in addition to the marginal increase in spending on ADAP from US$639 million in 2002 to US$693 million in 2003 -- something that reflects a plateauing annual percentage increase in effect since fiscal year 2000 -- total federal transfers to states based upon the estimated number of Americans living with HIV/AIDS have actually decreased from 2002 to 2003, further limiting care and treatment available to populations most dependent upon ADAP and other Ryan White support programs.

As if the foregoing were not enough to cause concern, government changes will likely mean that fewer impoverished patients will be able to access government HIV assistance programs at the same time that people with low income make up a growing proportion of the newly HIV-infected. There is news from several states and municipalities, for instance, that mind-numbing state budget shortfalls may be partially made up by initiating or increasing the co-payment required of patients in purchasing antiretroviral and other drugs listed on state ADAP formularies. The most notable of these, until just recently, were significant co-payment increases being considered in California (from US$30 to US$50 per prescription), which were ultimately dropped due to widespread objection from patient and treatment groups. On a positive note, this success in limiting amendments to subsidized healthcare for those in greatest need attests to the continued potential for positive change through focused advocacy efforts. Additional state-specific factors complicating access include the income threshold at which patients qualify for coverage, state of disease progression at which patients qualify for coverage, and state-imposed enrollment caps, where they exist.

Much of the monitoring of and response to the shifting patterns of treatment access through ADAP continues to come through the National ADAP Monitoring Project undertaken jointly by the National Alliance of State and Territorial AIDS Directors (NASTAD), the Henry J. Kaiser Family Foundation, and the AIDS Treatment Data Network. In fact, monitoring reports for 2002 and 2003 shed important statistical light on anecdotal information that has recently been shared with the International Association of Physicians in AIDS Care (IAPAC) by U.S.-based physician and allied healthcare professional members about increasing gaps in ADAP coverage.

Statistics themselves, however, do not always speak to the real issues faced by physicians and patients. Therefore, with a view to determining what critical issues must be addressed by IAPAC and partner organizations in ensuring the continued success of ADAP and the care that HIV patients deserve, I am requesting this month that HIV care providers submit to the association testimony of this system in transition. As such, I strongly urge you to relate concise details of your experiences and concerns to IAPAC's Director of Global Health Policy, Scott A. Wolfe, at swolfe@iapac.org. In so doing, you will allow IAPAC to document challenges that your practice or your patients are currently experiencing at the state level in ensuring access to critical drugs that all persons living with HIV/AIDS deserve to have available. Further, this will enable the association to present strong evidence of the impact that changing demographic, epidemiological, and political realities are having on the care available to HIV-positive patients throughout the United States.

In light of the concerns that many physicians, allied healthcare professionals, and patients throughout the United States have for the future of healthcare in general, and HIV care and treatment in particular, I thank each of you in advance for assisting IAPAC to make good on its promise of ensuring the best possible care for all persons living with and affected by HIV/AIDS.

José M. Zuniga is President of the International Association of Physicians in AIDS Care, and Editor-in-Chief of the IAPAC Monthly.




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