UPTON: “Advancing health research for millions of young patients who suffer from rare and genetic disorders must be a priority.”
WASHINGTON, DC – House Energy and Commerce Committee Chairman Fred Upton (R-MI) today kicked off debate on H.R. 2019, the Gabriella Miller Kids First Research Act. This bill would redirect wasteful spending on political conventions to important, scientific, pediatric research. H.R. 2019 was introduced by committee member Rep. Gregg Harper (R-MS) in April.
Remarks as prepared:
Mr. Speaker, I rise today in support of the Gabriella Miller Kids First Research Act of 2013. H.R. 2019, authored by my colleague Gregg Harper, is a bill that will help countless kids and families across the country.
The Gabriella Miller Kids First Research Act would prioritize funding for the research of pediatric diseases and disorders such as cancer, autism, and Fragile X. It would eliminate taxpayer financing of party conventions and use these funds to expand pediatric research at the National Institutes of Health through the NIH Common Fund. This bill truly puts kids first.
Gabriella Miller was a little warrior in the battle against childhood cancer. At just 10 years of age, she had courage miles beyond her years. A frying pan and walnut is all you need to understand her brave outlook on life. When she was diagnosed with brain cancer, she was told the tumor was the size of a walnut. From then on, Gabriella always travelled with her trusty frying pan, squashing countless walnuts along the way.
That is the kind of courage and outlook on life that Gabriella had.
Advancing health research for millions of young patients who suffer from rare and genetic disorders must be a priority. While we have made great strides in the country in finding cures and treatments, we still have a great amount of work to do. Included in this work is pushing research that will help uncover cures for pediatric diseases. In order for clinical trials and other advancements to meet their full potential, adequate resources must be directed to pediatric research. The legislation is an example of how much can be accomplished by ending wasteful spending and redirecting those funds toward national priorities like pediatric research.
This effort will also help families like the Kennedys in Mattawan, Michigan. Eric and Sarah Kennedy have two delightful young daughters, Brooke and Brielle, who have the rare disease Spinal Muscular Atrophy. These two angels, who are fighting SMA with the same vigor and sunny outlook exhibited by Gabriella, are decorated little generals in the effort to boost research for rare diseases and serve as an inspiration for all. The sad reality is it is often difficult to conduct research into rare diseases due to the small number of individuals with the disease. But, we are working to change that, and provide families with greater hope for a cure or advances in treatment.
H.R. 2019 has over 150 co-sponsors and is supported by a long list of patient advocacy groups including Autism Speaks, the Juvenile Diabetes Research Foundation, the Leukemia and Lymphoma Society, and FightSMA.
I wholeheartedly agree with the bill’s Democrat Sponsor, Mr. Welch who recently asked, “Can we just put the battle axes down for a while and take a step forward?” He thinks we can. And I do too.
To the Millers who are with us today, thank you for sharing your daughter. Although we wish Gabriella was here with us today, her message to this body rings true, “Stop talking and start doing.” Gabriella, we heard you loud and clear. And today, we will put kids first.