It’s Time to Say Thank you to Our Champions in Congress
In 2008, I lost my sixteen-year-old daughter, Taylor, to pediatric cancer just days after she first received an innovative immunotherapy treatment in Germany. We travelled overseas because this treatment was not yet available in the United States and, after an almost five year battle, we were out of options. However, had she been eighteen years old, we may have had more available options in the United States; at the time, the law in this regard was not on our side. Drugs approved for adults were not available for use by children.
In support of future generations of children, I, alongside other families touched by this awful disease, have spent the last four years actively advocating on Capitol Hill for the passage of The Childhood Cancer STAR Act. The STAR Act, which stands for the “Survivorship, Treatment, Access and Research Act,” focuses on increased governmental funding for pediatric cancers, enhanced access to adult drugs, and funding and research for the issues that far too many childhood cancer survivors face later in life as a consequence of their earlier treatments. Indeed, many childhood cancer survivors live with chronic health conditions due to long lasting side effects; some even lose their lives. Our survivors deserve better and I am overjoyed that our government is finally doing something about it.
On May 22, 2018 the world of pediatric cancer achieved a huge milestone. Thank you to Congress for the bi-partisan passage of The STAR Act. It is now set to go to President Trump’s desk where it is expected be turned into law. I am personally and particularly grateful to all the staffers with whom I met on Capitol Hill, from Senator Chuck Schumer and Senator Kirsten Gillibrand to House Representative Carolyn B. Maloney’s, all from the State of New York in which I reside. This could not have been achieved without their support.
The passage of The STAR Act, while profound, is only the first step. There is still work to be done! We need full funding of The STAR Act, which requires an allocation of $30 million dollars per year for five years. The STAR Act could make all the difference to children fighting pediatric cancer.
There is nothing more precious than our children. All of our children deserve a bright and healthy future. My daughter lost her battle but hopefully many others will go on to live long, productive lives. Bravo to our government for finally taking a stand!