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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

WASHINGTON, Sept. 14 /PRNewswire-USNewswire/ -- The following letter was sent today to all members of Congress by the National Organization for Rare Disorders (NORD):

September 14, 2009

Dear Member of Congress:

On behalf of the 30 million Americans who are affected by one of the nearly 7,000 rare disorders, the National Organization for Rare Disorders (NORD) urges you to pass comprehensive health reform legislation to assure that every American has access to affordable, meaningful health insurance coverage. Failure to pass such long-overdue legislation this year would be devastating for people with rare diseases, and for millions of others burdened by chronic illness.

Today, far too many people under the age of 65 with serious medical conditions have inadequate or no access to health insurance. In most areas of the country, in the absence of employer-based coverage, medical underwriting practices by insurers often result in pre-existing condition limits on coverage, higher health insurance premiums and even outright denials of coverage. People with rare diseases customarily incur substantial medical expenses, first in efforts to obtain an accurate diagnosis, and thereafter from hospitalizations, physician office visits, and--for those fortunate enough to have a disease for which there is a treatment--therapies that may cost tens of thousands of dollars per year or more.

NORD and its members, which include approximately 150 patient organizations such as the Moebius Syndrome Foundation, National MPS Society, Prader-Willi Syndrome Association (USA), and VHL (Von Hippel Lindau) Family Alliance, to name a few, believe that for people with rare diseases--and, indeed, for all Americans--four basic principles should be part of any acceptable reform:

  • Health reform must prohibit insurance companies from denying or limiting 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 American, regardless of health status.


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SOURCE National Organization for Rare Disorders (NORD)
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