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Patient Advocates Cite Insurance Caps as Critical Difference in Senate and House Health Care Reform
Date:1/14/2010

Advocacy groups warn that Senate version of bill would not eliminate caps for millions of Americans

WASHINGTON, Jan. 14 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders and 34 other patient advocacy groups are warning that the Senate health care reform bill would not eliminate annual and lifetime insurance caps for many Americans, contrary to common belief.  The groups say millions of people would still be vulnerable to loss of their insurance benefits if provisions from the Senate bill are adopted in the final legislation.  

"This is a critical issue for patients with rare diseases, as it should be for all patients," said Peter L. Saltonstall, NORD's president and CEO.  "As the House and Senate negotiate health care reform, we must keep in mind the central focus, to create medical security. Capping insurance payments, either on an annual or lifetime basis, can lead to substantial limits on medical care for patients."

Saltonstall said NORD often hears from patients who are worried about being unable to afford their treatment or impoverishing their families if they should lose health benefits as a result of reaching a cap.  For instance:

  • A 24-year-old man with hemophilia anticipates that his lifetime medical benefits will be exhausted in about three years.
  • The family of a 9-year-old child diagnosed with aplastic anemia at age 4 worries that he could exhaust his benefits very early in his life.
  • Parents of a high school student stricken with life-threatening illness at age 16 worry about losing his insurance coverage, which has a $1 million lifetime cap.

NORD was one of 63 patient advocacy groups that sent a letter this week to Senate Majority Leader
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SOURCE National Organization for Rare Disorders (NORD)
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