Courtesy of the Mayo Clinic
By Forum Staff
The State Senate and Assembly both unanimously voted in favor of a bill aimed at improving the lives of adults living with cystic fibrosis, Assemblywoman Stacey Pheffer Amato (D-Howard Beach), the bill’s author, announced Tuesday.
The proposed legislation would establish a program to reimburse the cost of providing health care or health insurance to eligible individuals who have cystic fibrosis.
According to Pheffer Amato, the bill would ensure that those with the rare genetic disease that damages the lungs and digestive system receive support.
Photo Courtesy of Assemblywoman Pheffer Amato
“It’s been one of my biggest honors to work with the advocates and my neighbors to get this bill over the finish line and create legislation that will save and improve lives,” Assemblywoman Pheffer Amato said.
It is estimated that cystic fibrosis impacts over 1,600 New Yorkers. According to the Cystic Fibrosis Foundation, CF is a mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene that causes the CFTR protein to become dysfunctional. When the protein is not working correctly, it’s unable to help move chloride—a component of salt—to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky. In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications.
“This legislation directly affects the people who need it the most, individuals and their families battling with this disease. It will give those impacted by CF the resources they deserve so they can purchase medication, receive care and live the life they want. It’s been one of my biggest honors to work with the advocates and my neighbors to get this bill over the finish line and create legislation that will save and improve lives,” Pheffer Amato said.
One of those impacted is Michael Fox of Breezy Point. Fox, along with his mother, Gretchen, have worked tirelessly and shined a light on this rare disease. “Passing this bill is tremendous for those New Yorkers struggling due to the substantial financial burden caused by living with cystic fibrosis,” Michael Fox said.
The bill now heads to the desk of Gov. Kathy Hochul for consideration.
