The Jordan Fifer Fund - Congressional Record

Congressman Danny K. Davis represents the district in Chicago where Jordan was due to have a stem cell transplant. He graciously arranged for VIP passes for Jordan to visit Chicago attractions during his evaluation trip in 2002, and he was an active co-sponsor of the Rare Diseases Act of 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.