Last year I had the privilege of meeting a brave young boy from Austin, Rex Ryan. I met this tenacious 4-year-old at Dell Children’s Hospital during his clinical trial for the first FDA-approved childhood cancer drug in over two decades, Unituxin. Rex had been fighting neuroblastoma since he was just 18-months-old and, until just recently, all traditional methods of treatment had been exhausted. Now Rex is living a healthy life without cancer.
The fight against childhood cancer is one near and dear to my heart. When I was first elected to Congress, I founded the Childhood Cancer Caucus to raise awareness for pediatric cancer, advocate on the behalf of those suffering, and work towards the goal of eliminating cancer as a threat to all children.
Rex’s story is only possible through legislation driven by our Childhood Cancer Caucus, known as the Creating HOPE Act, which became law in 2011. This law helps spur the creation of drugs like Unituxin by creating a system of incentives to fund more life-saving pediatric cancer drugs.
The Creating HOPE Act was renewed just this month when the President signed a bill to modernize and streamline drug development, The 21st Century Cures Act, into law. This means more opportunities to find life-saving cures for kids at least through the year 2020, and continued hope for many families still looking for a cure.
21st Century Cures also included parts of my Andrea Sloan CURES Act, which centers around “compassionate use.” Also known as “expanded access,” this is the practice of terminally-ill patients requesting the use of drugs still in the clinical trial phase that have been recognized by doctors to be a potential cure.
In 2013, Andrea — an Austin native - fought a very public battle for “compassionate use,” but unfortunately by the time it was granted, it was too late. Thanks to the passage of my provision, future critically ill patients won’t have to lose a similar battle. Pharmaceutical companies are now required to state their “compassionate use” policies and this bill provides patients with easier access to treatments that would otherwise be unavailable.
In addition to the exciting reforms from 21st Century Cures becoming law, another bill I introduced — the Childhood Cancer STAR Act — was passed by the U.S. House this month. The STAR (Survivorship, Treatment, Access, and Research) Act is the most comprehensive childhood cancer bill ever considered before this Congress. It would allow us to better understand the causes of pediatric cancer and the effects of treatment, provide doctors with resources necessary to help identify children who may be at risk, and improve collaboration among providers so doctors are better able to care for survivors.
I am proud of our efforts to pass these bills on behalf of children like Rex and the many other affected families in Texas. A great America is an America that leads the world in medical innovation. And I look forward to seeing these bills implemented to hone our healthcare system into one that places our kids first and works to quickly find life-saving cures.
It continues to be a great honor to be allowed to represent you in the United States House of Representatives. Please visit my website,www.mccaul.house.gov for more information on constituent services, legislative updates, my E-Newsletter, and the ongoing work in Congress. I also encourage you to follow me on Facebook, Twitter, Instagram, and YouTube pages to get updates on my work in Washington and the 10th District.