Lambda AIDS Project Director's Update
The Health Insurance Portability and Accountability Act and Recent U.S. Supreme Court Decisions
The powerful new AIDS treatment therapies such as protease inhibitors are creating complex policy as well as medical challenges. One example is the recent development of principles and guidelines by the National Institutes of Health (NIH) for the use of antiretroviral therapy in treating HIV disease. As Lambda acknowledged in comments to the NIH, these guidelines are needed to ease many treatment and insurance difficulties. The guidelines make clear the necessity of viral-load testing, which many insurers have resisted covering. The guidelines also warn that doctors ethically cannot withhold treatment from patients based on generalized assumptions about who will be "good" patients or "bad" ones. However, the NIH places a troubling emphasis on drug intervention early in HIV infection, despite the lack of data supporting this strategy and considerable data warning about the existence of drug-resistant virus that stops responding to the new therapies.
The media binge on the new drug therapies as a "cure" also has trickled down to some employers and private disability insurers, which have begun to use measures of low viral load to justify premature coverage cut-offs. We have not yet seen the floodgates burst on this, but at a July national "back-to-work" roundtable sponsored by several local and national AIDS advocates, Lambda cautioned against suggestions that the new drugs have created armies of robust people with AIDS who could work if only someone would hire them. While employment is important for those able to return to the job market, treatment-success stereotypes unwittingly may threaten the income and essential medical benefits of those for whom a traditional work schedule remains an impossibility.
The Health Insurance Portability and Accountability Act (HIPAA) which took effect this past July, also required attention from the AIDS Project. It is important that we advocate for interpretations of this law that will protect those seeking insurance coverage for needed HIV therapies. We worked closely with a coalition of advocates around the country, headed by Chai Feldblum at the Georgetown University Federal Legislation Clinic in Washington, D.C., to pull together a unified analysis of the interplay of HIPAA and the Americans with Disabilities Act (ADA). Our goal is to preserve our progress thus far while allowing gain in areas in which the ADA is not a realistic tool.
In the courtroom, our U.S. Supreme Court losses in the physician-assisted suicide cases were both disappointing and a source of hope. In Vacco v. Quill and State of Washington v. Glucksberg, a majority of justices made it clear that while they now would not uphold a blanket challenge to state laws against physician-assisted suicide, they might revisit the issue down the road, after further public and legislative consideration of this controversy. Assisted-suicide opponents argued that, with managed care, escalating treatment costs, and inequities in health care access, legalization would lead doctors and other to push the old, disabled, and poor into ending their lives. These debates exposed the widespread belief, even among medical professionals, that doctors can not be trusted to protect the interests of their patients. There will be a silver lining to the Quill setback if this fear inspires activism among health-care providers to improve managed care and treatment access for the ill and disabled.
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