Two Bilirakis Bills Reviewed During Health Hearing
Washington, DC: Earlier this week, the House Health Subcommittee held a legislative hearing to examine a variety of bills designed to improve public health outcomes through the advancement of critical research. During this important hearing, two legislative proposals authored by Congressman Gus Bilirakis were considered, the National Plan to End Parkinson’s Act and the Gabriella Miller Kids First Research Act 2.0 Act. Getting both measures across the finish line this Congress are legislative priorities for Congressman Bilirakis and he was eager to garner his colleagues’ support during the hearing.
The National Plan to End Parkinson’s Act aims to unite the federal government in a mission to cure and prevent Parkinson’s, alleviate financial and health burdens on American families, and reduce government spending over time. Parkinson’s disease is the second most common – and fastest-growing – neurological disease globally with nearly 90,000 new cases diagnosed every year. Congressman Bilirakis’s brother, Dr. Emmanuel Bilirakis, battled Parkinson’s Disease for many years prior to his death just a few short weeks ago.
“I will continue this fight in memory of my dear brother and on behalf of all my constituents who are still struggling with this debilitating disease,” said CongressmanBilirakis. It takes a terrible toll on the physical, emotional and economic well-being of everyone involved. The lack of treatment options leave patients, families and the American taxpayers in a terrible quandary. We must change our approach to get better results, which is exactly what our legislation will do. It builds upon past success and strives to replicate other national project models that have helped advance health care goals. This critical legislation will provide hope to those who are suffering and hopefully lead to better patient outcomes with less expensive disease management.”
The bipartisan, bicameral Gabriella Miller Kids First Act 2.0 would reauthorize and increase funding for the National Institute of Health’s (NIH) Kids First initiative, which has supported lifesaving research of treatments for childhood cancer. The bill is named in honor of Gabriella Miller, who was diagnosed with an inoperable brain tumor and passed away in 2013 at age 10. Gabriella’s advocacy for lawmakers to “stop talking, start doing,” led to the creation of the Ten-Year Pediatric Research Initiative Fund which authorized $12.6 million in annual funds for childhood disease research. The Fund expires at the end of this Fiscal Year.
“Pediatric cancer remains the number one disease that leads to the death of American children. While survival rates have improved for some types of pediatric cancers, thousands of children are lost to cancer each year and many more encounter life threatening complications related to harsh chemotherapies. Children have significantly fewer treatment options than adults and oftentimes must rely on treatment regimens developed for adults because pediatric-specific treatments simply do not exist for many pediatric cancers and rare diseases. The Gabriella Miller Kids First Pediatric Research Program at the National Institutes of Health (NIH) is working to develop a large-scale data resource to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders. This foundational research is critical for facilitating a better understanding of pediatric cancers and holds the promise for the development of better treatments and possible cures. As a longtime advocate for children and rare disease patients, I am proud to push for the continuation of this crucial research,” Bilirakis added.