In Letter to Congress, NORD Urges Action on Healthc...( DANBURY Conn. July 31 --...),Health

DANBURY, Conn., July 31 /PRNewswire-USNewswire/ -- The following letter regarding health care reform was sent to all members of Congress today by the National Organization for Rare Disorders (NORD):

July 31, 2009

Dear Member of Congress:

On behalf of the 30 million Americans who are affected by one of the nearly 7,000 rare disorders, we urge you to pass comprehensive health reform legislation designed to assure that every American, regardless of health status, has access to affordable, meaningful health insurance coverage. Failure to pass such long-overdue legislation this year would be devastating and an unacceptable option for people with rare diseases and their families, as well as the millions of other Americans who similarly are 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 can, and too often do, result in pre-existing condition limits on coverage, higher health insurance premiums and, for many, 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, physicians' office visits, and -- for those fortunate enough to have a therapeutic drug, biological, device or medical food -- from costs of these treatments, some of which amount to tens of thousands of dollars per year.

As such, for people with rare diseases -- and indeed for all Americans -- three basic principles should be part of any acceptable reform. First, health reform must prohibit insurance companies from denying or limiting coverage, or charging patients more for premiums based on health status. Second, pati
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