Four Bilirakis Measures Advance
Washington, DC: Today, the House Health Subcommittee voted in favor of four measures authored by Congressman Gus Bilirakis. These provisions are designed to improve public health outcomes,advance critical research, and ensure vulnerable children have access to mental health services.
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 Gabriella Miller Kids First Research 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. The Gabriella Miller Kids First Pediatric Research Program at the 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.
Two Bilirakis-authored measures were also voted favorably out of committee as part of the reauthorization of the SUPPORT Act which is a large package containing a variety of measures to improve mental health and substance abuse treatment options throughout the country. The Combating Illicit Xylazine Act will help stop the illicit use of the highly dangerous sedative causing fatal overdoses nationwide, xylazine. “My goal is to save lives and to make sure law enforcement has the tools its needs to respond appropriately to those who are making these deadly concoctions killing so many of our neighbors. At the same time, we must ensure that those veterinarians who are using xylazine for legitimate purposes have the ability to continue doing so. Our legislation strikes that right balance,” said Bilirakis.
The Ensuring Medicaid Continuity for Children in Foster Care Act of 2023 will fix a technical glitch in federal statute created by passage of the Family First Prevention Services Act of 2018 which threatens to keep the most at-risk children from being able to access appropriate mental and behavioral health services covered by Medicaid. In this 2018 law, Congress created a new category for settings delivering trauma-informed treatment to foster care children in a residential setting. These highly specialized programs, known as Qualified Residential Treatment Programs (QRTPs), offer the opportunity for children who have been severely traumatized to receive the professional help they need to heal and live healthy lives. QRTPs focus on a holistic approach to treating symptoms of trauma and accompanying behavioral and emotional challenges for children with assessed needs. However, the Centers for Medicare and Medicaid Services (CMS) has interpreted the statute to prohibit federal Medicaid reimbursement for residential facilities that house more than 16 persons, by considering them as Institutions for Mental Disease (IMDs). Since then, QRTPs have been unable to draw down federal funding, which was certainly not the intent of Congress. The Bilirakis bill will allow children in the state foster care system who stay in a QRTP to receive the treatment they need without jeopardizing their participation in the Medicaid program. “Most children who are placed in the foster care system have experienced significant trauma,” Congressman Gus Bilirakis remarked. “We need to prevent exacerbation of their situation by ensuring continuity of care in a setting that meets their individual needs. I am committed to ensuring foster care kids have continued access to quality trauma-informed treatment in a supportive environment that enables them to heal, without losing access to Medicaid services. I am proud to work across the aisle to fix this unintended bureaucratic roadblock and am committed to working in a bipartisan fashion to ensure children get the appropriate health care they need and deserve.”
The next step in the legislative process for all four of these critical bills is consideration by the full Energy & Commerce Committee, which is anticipated by the end of the month.