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Expert Commentary

HIV Care: There's Still Work to Be Done

Dr. Paul A. Volberding examines the evolving system of health care payment in the United States and the implications of the recent Supreme Court ruling on the Affordable Care Act for the future of HIV treatment.

While the world's attention is focused on the very real scientific progress in preventing HIV transmission and even on finding an eventual cure, another front is opening in the battle to care for those already infected in the United States, driven by the dramatic changes in health care brought by the Affordable Care Act (ACA). Access to potent antiretroviral therapy can prolong survival and block further spread of HIV, but care remains costly and must be supported by public or private insurance in essentially all cases. Public funding pays for 90% of HIV care in the United States, through a combination of federal Medicare insurance for older and disabled persons, state and federal Medicaid insurance for the very poor, and the federal Ryan White HIV/AIDS Program for those who do not qualify for either source of public insurance. (Those of us in California know Medicaid as Medi-Cal.) The Ryan White Program, in place since 1990, pays for HIV medications and the package of supportive services that are often critical for retaining patients in continuous care, although the actual benefits vary substantially in different regions.

The HIV community ... must become committed to this new battle, demanding that guidelines recommending care for all be facilitated by consistent public insurance for all.

Under the initial provisions of the ACA, access to Medicaid for all U.S. citizens, including those with HIV infection, would substantially broaden to include uninsured, unmarried persons without children whose income is less than 133% of the federal poverty level (with the costs of the expansion federally supported in full for the first 3 years, and at 90% thereafter). That would extend Medicaid to most of the 500,000 persons with HIV who currently receive Ryan White-sponsored care and to the 200,000 who receive antiretroviral medications through the related AIDS Drug Assistance Program (ADAP).

The impact of this evolving system of health care payment could be game changing. Medicaid support allows HIV-infected patients access to a much larger array of providers and a broader variety of care services--the same as all other patients. However, these new benefits under the ACA come at some risk. For patients who become eligible for Medicaid, care under Ryan White will be precluded or limited to specific services not provided through Medicaid (because the Ryan White Program will remain reserved for those with no other insurance access). Ryan White clinics typically are staffed by providers with substantial experience in HIV care but, unfortunately, not all of these clinics will be eligible to deliver care under Medicaid. Thus, HIV patients may, either by choice or by necessity, migrate to new and potentially less-experienced HIV caregivers and compete for care in facilities with a greatly expanded number of persons with other health care needs who also are recipients of Medicaid.

Adding yet another level of complexity to this rapid shift in the HIV care landscape is the recent U.S. Supreme Court decision which, while affirming the constitutionality of the ACA, allows states the choice of expanding Medicaid coverage or not. Although some states expanded Medicaid eligibility even before the Supreme Court decision, others may choose not to do so, leaving many patients uninsured. Thus, in some states, funding for HIV care will shift substantially toward Medicaid, while in states that do not expand Medicaid, the Ryan White Program may remain the primary source of coverage for HIV-infected patients. In many of those same states, the Ryan White Program already is stretched to the breaking point and limited as to the services it can provide. Another reason for concern is the possible erosion of political support for Ryan White allocations, particularly from areas of the country where the program's central role in providing HIV care has been supplanted by Medicaid.

This discourse obviously is not a dry academic exercise. The promise of HIV care for all, with its astounding potential for personal and public health advantage, is hollow if access to care is denied or fragmented by incomprehensible regional differences and movements of patients between these jurisdictions. The HIV community--scientists, care providers, and those with or at risk of HIV infection--must become committed to this new battle, demanding that guidelines recommending care for all be facilitated by consistent public insurance for all. We also must demand that supportive services helping to retain persons in care--lessons learned with Ryan White--not be lost under Medicaid, but rather be extended to those with other chronic diseases. No matter how encouraging the new scientific breakthroughs, it's much too early to declare victory in the battle against the HIV epidemic.