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An Open Letter to Members of Congress: The Nearly 30 Million Americans With Rare Diseases Desperately Need Health Care Reform!
Date:9/14/2009

ng coverage, or charging patients more for premiums based on health status.
  • Patients must be protected against catastrophic out-of-pocket costs and annual or lifetime insurance caps.
  • Insurers must not be allowed to cancel a policyholder's coverage as a result of a medical diagnosis.
  • Health reform must include tax credits and other direct financing support sufficient to assure that lower and middle income patients can afford coverage.
  • We recognize and accept that these important health benefits would require that individuals assume responsibility for purchasing health insurance. NORD is prepared to be a constructive force in supporting measures that provide for necessary savings and revenues to ensure that these benefits are paid for and managed in a fiscally prudent fashion.

    We are pleased that many Congressional leaders are pursuing policies that achieve NORD's principles. While comprehensive federal health reform cannot be all things to all people, it must not be an empty promise to Americans, including the nearly one in 10 who suffer from rare diseases.

    Finally, we understand and accept that compromises will be made as health reform legislation makes its way through the legislative process. While the basic patient protections outlined above are fundamental to any reform, we recognize that there will be design approaches that would not be our first choice. However, we pledge that we will not allow the perfect to be the enemy of the good. Failure to act now, because of seeking a perfect solution, is not an acceptable option in our opinion and would have dire consequences for individuals, families, and our country as a whole.

    NORD thanks you for your commitment to meaningful health reform. We are eager to work with you to assure passage of legislation that makes health insurance affordable and accessible for every A
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    SOURCE National Organization for Rare Disorders (NORD)
    Copyright©2009 PR Newswire.
    All rights reserved

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