As parents to six kids, my wife Christie and I want all our children to be good people, accomplish their goals and live long, healthy lives. I think that’s what all parents want for their kids. No parent wants their worst nightmare to come true when they hear “your child has cancer” and heartbreakingly, we all know someone whose lives have been affected by childhood cancer.
In 2016, Gary and Mariah McAlpin of Tahlequah heard those awful words when they learned their 2-year-old son, Kai had a rare form of pediatric cancer known as T-Cell leukemia. Throughout his treatments, Kai’s parents referred to Kai as “Warrior Kai” because he fought cancer each day with a courage and persistence unlike any other. He fought hard but lost his battle on March 17, 2017. It’s now up to us to continue to the fight for Kai.
Cancer knows no boundaries, and it affects children in Oklahoma’s communities at the same alarming rates that it does other children across the country.
I believe we can and should do more to save the lives of the vulnerable children who have childhood cancers of any kind. We have made fighting childhood cancer a priority in Congress. This month, during Childhood Cancer Awareness Month, I want to highlight some of the progress we have made in fighting this disease.
Kids who are fighting cancer should have a chance to use the same treatments as adults fighting cancer. The RACE for Children Act (Research to Accelerate Cures and Equity for Children Act) which was signed into law in 2017, helps make that happen. The RACE for Children Act updates the Pediatric Research Equity Act, which requires studies of adult drugs in children during the drug development process. While PREA had success in hundreds of cases by providing critical information on a drug’s use in children, it had never been applied to a cancer drug. This law will now allow the most innovative adult treatments for cancer to be studied for use in children.
Another piece of legislation that will improve kids’ lives, the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, was signed into law last year. This legislation focuses on improving efforts to identify and track the incidences of pediatric cancer. It works to improve the quality of life for children with cancer, expand opportunities for pediatric cancer research, and ensure there is pediatric cancer expertise on the National Cancer Advisory Board.
While these are some important successes, we are continuing the fight this Congress. The Creating Hope Act incentivizes the pharmaceutical industry to develop drugs for children with cancer and other life-threatening illnesses. It was originally passed in 2012 and was reauthorized until 2020 as a part of the 21st Century Cures Act that was signed into law three years ago. Later this week, I will join several of my colleagues to introduce legislation that will permanently reauthorize this program.
No child should have to spend their childhood battling cancer and no parent should have to live their worst nightmares. The fight of Warrior Kai and all children who have lost their battle with cancer continues on with us. We will not stop fighting until there is a cure for childhood cancer.