[Congressional Record (Bound Edition), Volume 149 (2003), Part 9]
[Extensions of Remarks]
[Pages 12708-12709]
[From the U.S. Government Publishing Office, www.gpo.gov]




   COMMEMORATING THE 20TH ANNIVERSARY OF THE ORPHAN DRUG ACT AND THE 
                NATIONAL ORGANIZATION FOR RARE DISORDERS

                                 ______
                                 

                           HON. RAHM EMANUEL

                              of illinois

                    in the house of representatives

                          Monday, May 19, 2003

  Mr. EMANUEL. Mr. Speaker, I rise today in strong support of H. Con. 
Res. 147, Commemorating the 20th Anniversary of the Orphan Drug Act and 
the National Organization for Rare Disorders. This resolution honors an 
exemplary organization that has vastly improved the lives of millions 
of Americans with rare diseases and their families.
  The Orphan Drug Act of 1983 filled a void in our health care system--
the fact that drug companies were unwilling or unable to invest in 
developing products to treat rare diseases. The incentives that the 
Orphan Drug Act put into place have made dramatic improvements in the 
availability of treatments for the 25 million Americans affected by 
rare diseases. In the decade before the Orphan Drug Act was signed into 
law, ten treatments for orphan disease were developed. In the last 20 
years, more than 200 treatments for rare diseases have been approved by 
the FDA, and more than 900 more are in development.
  The National Organization of Rare Disorders has represented a 
lifeline for millions of families since its inception in 2003. It has 
been instrumental in providing information about diseases and their 
treatments, and for connecting individuals impacted by rare disorders 
with advocacy organizations and with each other, allowing patients and 
families to gain invaluable support and advice from those suffering 
from the same conditions. It has connected patients with drug 
assistance programs, to help them to access life improving drugs that 
they otherwise could not afford.

[[Page 12709]]

  I want to draw particular attention to the various disorders 
characterized as types of epilepsy. The Orphan Drug Act has been 
instrumental in the development of epilepsy treatments such as sodium 
valproate and a gel form of diazepam, or Valium. But, for epilepsy and 
thousands of other disorders, there is much more work to be done. New 
evidence of the damaging long-term effects of seizures represents an 
additional call to action to develop better treatments for the various 
epileptic disorders. Twenty-five percent of epilepsy patients have 
uncontrolled seizures, and even those for whom medicine or surgery are 
effective still suffer seizures and their damaging effects.
  Mr. Speaker, I thank Congressman Foley and the entire Energy and 
Commerce Committee for introducing this important resolution and 
bringing it to the floor today. And I applaud the perseverance of NORD 
founder Abbey Meyers and the other courageous individuals who advocated 
for the passage of the Orphan Drug Act and have given a brighter future 
to millions of American families over the last 20 years. For these 
reasons, I strongly encourage my colleagues to vote for H. Con. Res. 
147.

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