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Can Parents Push Too Hard?

Is there a downside to lobbying for research funding for specific diseases?

By Allan Coukell // Winter 2006
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Assiduous behind-the-scenes lobbying convinced Congress to pass the Children’s Health Act of 2000, which made autism research a federal priority. How effective are patient-advocacy groups that influence legislation and research funding—and is there a downside to such lobbying?

Mary Woolley, president of the health-research advocacy group Research!America, calls patient- and parent-led groups “the most important piece of leverage” for mobilizing federal spending. But is disease advocacy a zero-sum game? When disease-specific interest groups win added resources for one condition, does another suffer? In 1993 the National Cancer Institute boosted funding for breast cancer research by $53 million and also approved increases for cervical, ovarian and prostate cancer research. To balance the budget, research for leukemia, lymphoma and several other cancers took corresponding cuts.

Jerome Kassirer, a former editor-in-chief of the New England Journal of Medicine and author of On the Take: How Medicine’s Complicity With Big Business Can Endanger Your Health, says that “the squeaky wheel gets the oil...sometimes for better, sometimes for worse.” He is concerned about financial links between family advocacy groups for some diseases and the companies that produce drugs to treat them. For their part, autism advocates say they will be glad of the day when the pharmaceutical industry begins to pay attention to the potential market for a treatment for the disorder.

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