25
Jul2012

by Joan Rachlin, JD, MPH, Executive Director

Last week’s Food and Drug Administration approval of Truvada, the first drug to help prevent HIV infection in high-risk populations, was extraordinary, and extraordinarily well-timed. The announcement coincided with the opening of the 2012 International AIDS Conference, which was held in the US for the first time since President Obama lifted a travel and immigration ban on HIV-positive people in October 2009.

National Public Radio’s (NPR’s) coverage of the story included a rebroadcast of Magic Johnson’s announcement, some 20 years ago, that he had HIV and was thus retiring from the NBA. The presumed subtext of his retirement was that he would be “getting his affairs in order,” but today he is alive, well, and leading a very active life. This news, which has been mirrored in the experiences of millions, is thanks to biomedical research. Truvada is but the latest in a long and strong line of antiretroviral drugs that have turned AIDS into a chronic disease and not a death sentence.

Yet, as the 100 day run-up to the November election approaches, I’m left wondering whether other drugs and therapeutics will be developed should the political landscape in Washington change come January.

Just last week the House Appropriations Committee released the draft fiscal year 2012 Labor, Health and Human Services funding bill, which was quickly passed by the committee’s Labor, Health and Human Services, Education and Related Services sub-committee. As was reported last week by several of our collegial organizations, the House appropriations sub-committee bill places the well-being of Americans in jeopardy. This bill would require a “zero out” (i.e. termination) of funding for the Agency for Healthcare Research and Quality (AHRQ), effectively eliminating patient-centered outcomes research. In an email publication, the Association of American Medical Colleges (AAMC) described the key provisions of the bill:

  • The bill "terminates" the AHRQ, effective October 1 (page 90-92).
  • The bill contains a provision (page 84, section 217): "Notwithstanding any other provision of law, none of the discretionary funds appropriated by this Act may be used to support any patient-centered outcomes research."
  • The bill rescinds funding for the Affordable Care Act (ACA)-created Prevention Fund and contains numerous other provisions intended to repeal health care reform efforts.
  • The bill flat-funds the National Institutes of Health and cuts the Centers for Disease Control and Prevention budget by 10 percent.

Although this bill has virtually no chance of becoming law, given the current composition of the Senate and President Obama’s opposition to any decimation of the research enterprise, its mere introduction and sub-committee passage is a reminder that each of us can become active in this participatory democracy of ours by letting our congressional representatives know how we feel about research and the incalculable benefits it produces.

It’s also a good time to reflect on the meaning of ethics, which is commonly defined as “the discipline of what is good and what is bad, and moral duty and obligation.” Each of you reading this is steeped in the world of ethics and knows what the imperative to uphold high ethical standards requires. Thus, in addition to wishing you a lot of rest and relaxation with friends and family in the pre-election days, I also ask that you think about dashing off an email to your representatives and senators and to let them know what you think about this proposed spending bill, and about any similar attempts to hijack the health of Americans for political gain.

Stay well, stay cool, and always, onward in ethics and fairness.   

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2 thoughts on “A Few Thoughts about Washington and Research on a Hot Summer’s Day

  1. Anonymous

    I would appreciate not being exposed to the obvious political agenda of PRIM&R management; this is the second time of late that this has occurred. You may be surprised to find that not all of your members support the Affordable Health Care Act. To use your position to push your agenda is disconcerting, to say the least. Please keep your political agenda out of the PRIM&R arena. If PRIM&R is about pushing polical agenda's, this should be disclosed to potential members so that they are clear about what the organization truly represents.

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  2. Erica

    Thank you, Joan, for the timely and scary news from Washington. Although I cannot express surprise as to the direction of the bill, I can about the directed target. Why AHRQ and why patient centered outcomes research? What did I miss?
    Erica

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