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The IBD Act In Congress |
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When my mother and I went to Chicago in
the summer of 2002 for potential medical treatment, we were already planning to visit some museums
there. My brother, Craig, however, has a friend who's mother works for
Congressman Danny K. Davis (D-IL). Congressman Davis' district is where
Northwestern Memorial Hospital is located. Because he is so proud of his
"world class medical coverage", and was very happy I was using
it,
Congressman Davis was very nice in giving my mother and me VIP passes
and tours of the Field Museum of
History and Science and the Shedd
Aquarium. I sent him a thank you note, and then received a note from
him again. The experience was great for me.
Because Congressman Davis is so concerned about medical issues, he decided to co-sponsor the Rare Disease Act in Congress. Following is an excerpt from Congressional Record on October 1, 2002.
Mr. WAXMAN. Mr. Speaker, I am pleased to yield such time as he may
consume to the gentleman from Illinois (Mr. Davis).
Mr. DAVIS of Illinois. Mr. Speaker, I want to, first of all, thank the gentleman from California (Mr. Waxman) for yielding time to me, and commend him and the gentleman from Illinois (Mr. Shimkus) for introducing this legislation. I also want to thank the former commissioner of the Chicago Metropolitan Water Reclamation District, the distinguished JoAnn Alter, for bringing this matter to my attention. Therefore, I rise in support of H.R. 4013, the Rare Diseases Act of 2002. Mr. Speaker, with a large low-income population, 24 hospitals, 5 medical schools, and several research institutions in my district, I know firsthand the heartbreak faced by people who struggle to find the appropriate medical treatment for themselves and their families. We have made tremendous strides in education, research, and medical protocols for individuals with diseases that affect large populations. Much funding has been dedicated and continues to be directed to treatment of diseases such as cancer, heart disease, and diabetes, and this is all good. There are, however, a number of rare diseases which affect 200,000 or fewer Americans which continue to go underresourced. While statistically 200,000 people may be a small number, it is a large number when we consider it represents people needing medical treatment. However, if we aggregate the number of people suffering from at least 1 of the 6,000 known rare diseases and disorders, we are talking about 25 million Americans, 1 in 9, suffering from a rare disease.
Several months ago a mother and her young son, who suffers from
Crohn's disease, traveled hundreds of miles from Virginia to
Northwestern Memorial Hospital in my district to see if he could
be accepted into a special treatment program that was offered
nowhere near his home. He wrote a letter to me thanking me for
the fact that he was indeed able to get into Northwestern and to
be considered for treatment for his very rare disease.
This bill, H.R. 4013, which establishing an Office of Rare Diseases at the National Institutes of Health, by increasing the national investment in the development of diagnostics and treatment for patients with rare diseases and disorders, and by allowing for rare disease regional centers of excellence, is a quantum leap in the right direction. I again commend my colleagues for its introduction and urge swift passage of this resolution.
Thank you to Congressman Davis, his staff, and to Mrs. Leslie Tourigny for making this possible. P.S. The bill was approved.
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