ICYMI: Local Advocate Highlights Pediatric Cancer Legislation
Founder of Kids Shouldn’t Have Cancer Foundation, Kimberly Wade of Jerseyville, Illinois, recently published an opinion piece in The State Journal-Register and Alton Telegraph discussing the importance of recent legislation to fight pediatric cancer and help terminally ill patients.
Davis has been pushing for legislation that would provide more funding specifically for pediatric cancer. Congress recently passed multiple bills into law to increase funding for medical research, improve clinical trials for pediatric cancer, and opportunities for terminally ill patients.
Below are excerpts from Wade's opinion piece published last week:
As a mother who had her 8-year-old twin son die of brain cancer on Christmas Eve 2015, less than a year after his diagnosis, this legislation is extremely important to me and thousands of other parents who have heard their physician say “Your child has cancer.” Today, 43 children will be diagnosed with cancer. That is approximately two kindergarten classrooms. Devastatingly, seven of these children will die today and every day thereafter. My sweet son, Jonny, was one of them. However, these bills offer hope to those still living.
The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, signed into law on June 5, 2018, expands funding to new research opportunities, track childhood cancer rates, and improve the quality of life for childhood cancer survivors.
Unfortunately, even after remission, two-thirds of the survivors will suffer long-term effects from the disease or treatment itself, which include secondary cancers and organ damage. This research will allow physicians to better care for these children as they age and establish a new program to explore innovative models of care for these childhood cancer survivors.
On May 30, 2018, the Right to Try Act was signed into law. This legislation allows terminally ill patients to access experimental medical treatments yet to receive approval by the Food and Drug Administration (FDA).
The Right to Try bill is significant for those who suffer from a terminally ill diagnosis and do not qualify for a clinical trial. This bill allows these patients to try an FDA unapproved drug in hopes that it will have substantial effect on their well-being.
Davis has urged Congress to pass, H.R. 133, to eliminate the Presidential Election Campaign Fund, which hasn't been used by any major candidate in more than 20 years. Instead these funds would go to pediatric cancer research and paying down the national debt. The bill would transfer $63 million to the 10-Year Pediatric Research Initiative Fund. H.R. 133 has passed the Committee on House Administration, which Davis is a member, but has yet to be passed by the House.
We need to continue to push government and assist public charities in raising funds to increase pediatric cancer research funding. Our children need help for their voices to be heard. As my son, Jonny, said before he passed, “If they want me to be a man, they have to help me be a man.”
And Rep. Davis is doing just that. Last year, he voted to eliminate the Presidential Election Campaign Fund and use those existing funds toward pediatric cancer research and paying down the national debt…
I would like to thank Rep. Davis and all other legislators for pushing these bills through and making a difference for those who are suffering. I am thankful that the president signed the Right to Try bill and the STAR Act into law so that patients can start to reap the benefits and pediatric cancer can be researched further in hopes of finding better treatments and ultimately a cure.
Davis first met the Wade family in September 2015. Read the entire piece in The State Journal-Register and Alton Telegraph.