Janelle Irwin Taylor
Legislation that seeks to position Florida as a national leader in genetics, gene therapy and precision medicine cleared its first committee hearing Tuesday, 17-0.
Rep. Adam Anderson’s bill (HB 907), dubbed the Sunshine Genetics Act, would establish a free, opt-in newborn genetic testing program that would create a statewide research network to advance the diagnosis and treatment of rare diseases.
“The future of health care is now, and Florida is the catalyst for this transformation,” Anderson said. “By expanding access to genetic testing and accelerating medical research, we can change lives and make our state the epicenter of medical breakthroughs.”
The screening program would be administered by the Florida State University (FSU) Institute for Pediatric Rare Diseases’ Rare Disease Day Symposium.
Sen. Colleen Burton is carrying the Senate counterpart (SB 1356). It has not yet received a committee vote. If enacted, the bill would take effect July 1.
The issue of rare diseases is one Anderson often champions. His son, Andrew, suffered from Tay-Sachs disease, an ultrarare fatal genetic disorder with only 16 cases annually nationwide.
“Ensuring every newborn has access to life-saving screening and treatment is both a moral and economic imperative,” Anderson said. “I appreciate my colleagues’ support as we work to make Florida a leader in cutting-edge health care solutions.”
The FSU pediatric rare diseases institute opened last February after Anderson advocated for it and secured an initial $1 million grant. He later helped secure another $5 million in state funding, announced at the institute’s first symposium. The institute is part of FSU Health and works to help kids with rare diseases through research, education and clinical care.
There are more than 7,000 known rare diseases that affect some 350 million people worldwide, according to Anderson’s Office. His bill seeks to expand testing for such diseases, while accelerating medical research into their treatment and bringing hope to those who suffer and their families.
Last year, Anderson successfully ushered through a bill (SB 1582) that created a grant program to fund scientific and clinical research on rare diseases.
The program facilitates scientific and clinical research grants to study pediatric rare diseases and calls for collaboration among universities, research institutes and community practitioners to ensure a comprehensive approach to advancing detection and treatment of rare diseases in children.
Since his son’s death, Anderson and his family have been active in advancing research in rare diseases through the Cure Tay Sachs Foundation and their AJ Anderson Foundation. Anderson previously worked with former House Speaker Chris Sprowls to create Tay Sachs Awareness Day in Florida on Aug. 10, Andrew’s birthday.
