Reid letter

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					November 19, 2009

The Honorable Harry Reid
Majority Leader
United States Senate
Washington, DC 20510

Dear Majority Leader Reid:

On behalf of the 150 member organizations of the National Organization for Rare Disorders (NORD) representing nearly
30 million patients and families afflicted with one of the 7,000 known rare diseases, we are writing to convey our strong
support for passage of the Patient Protection and Affordable Care Act. While this legislation has shortcomings and we
will work to improve it before the President signs it into law, it is critically imperative the Senate votes to allow debate, to
close debate, and to pass the Patient Protection and Affordable Care Act before the end of the year.

NORD members can no longer tolerate further delay in the passage and enactment of comprehensive health reform
legislation. Our members are disproportionately burdened by the countless shortcomings of our health care system. They
face untenable insurance access barriers through:

       Ongoing and unacceptable pre-existing condition exclusions and medical underwriting practices;
       Costly annual and lifetime caps;
       The absence of a federal guarantee issue requirement, and;
       Little to no direct financial assistance for those Americans who cannot afford insurance.

The Patient Protection and Affordable Care Act directly and helpfully addresses each one of these harmful shortcomings
plaguing our nation’s health care system. With this in mind, we strongly believe that failure to act represents an explicit
policy choice with severely negative consequences for our members and for all Americans. In short, health care reform
delayed is health care access denied. As such, on behalf of all of our members, we urge you and all Members to promptly
pass the Patient Protection and Affordable Care Act.

Thank you for the leadership that you, Chairmen Max Baucus, Christopher Dodd and Tom Harkin, as well as countless
other Senators, have shown throughout this historical debate. We look forward to continuing our work with you and all
Members on both sides of the aisle to finally achieve the long overdue business of ensuring affordable, quality coverage
for all Americans.


Peter L. Saltonstall
President and CEO

Senator Max Baucus, Chairman, Senate Finance Committee
Senator Tom Harkin, Chairman, Senate Health, Educator, Labor and Pensions Committee
Senator Christopher Dodd, Chairman, Senate Banking, Housing and Urban Affairs

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