LANSING — State Reps. Abdullah Hammoud (D-Dearborn) and Jim Ellison (D-Royal Oak) introduced House Bill 4663, which would create the Cystic Fibrosis Advisory Committee. Cystic fibrosis (CF) is an autosomal recessive disorder that affects respiratory and digestive functions in the body. The committee would connect members of several CF foundations, physicians, nurses, the Michigan Department of Health and Human Services, and CF patients and guardians to examine and recommend comprehensive approaches to tackle key issues pertaining to CF.
“As we continue to fight for a cure, those affected by cystic fibrosis deserve to have their critical needs addressed both now and in the future. The Cystic Fibrosis Advisory Committee would fight for Michigan families affected by cystic fibrosis by spreading awareness, and protecting and improving the quality of life of those affected,” said Rep. Hammoud. “Our goal is to bring a diverse group of stakeholders to the table, including patients themselves, which is crucial to combatting every aspect of this disorder. This advisory committee would not only advocate for patients, but also conduct research and develop the necessary policies to foster real, tangible improvement in the daily lives of those affected by cystic fibrosis.”
Under the bill, committee members would:
- Review novel therapies and treatments for CF patients to ensure access to quality health care.
- Review funding opportunities for further CF research at accredited hospitals and universities in Michigan.
- Review health care and medication access for patients and families affected by CF to eliminate barriers to access.
- Study the impact of CF on schooling and employment.
- Present a report on recommendations for legislation.
Coinciding with HB 4663, Rep. Ellison introduced House Resolution 92, to declare May 2019 as Cystic Fibrosis Awareness Month in the state of Michigan.
“It is important to have a centralized cystic fibrosis committee in the state of Michigan, where those affected can reach out for questions, concerns, and support,” said Rep. Ellison. “The members of the committee will bring a broad, strong, and more diverse voice to cystic fibrosis patients, in hopes of one day helping to find a potential cure.”
Approximately 1,200 Michigan residents are affected by the disease, with 30,000 children and adults affected in the United States. Additionally, more than 10 million Americans are symptomless carriers of the defective CF gene, and the median age of survival is only 41 years.
“I am proud to sign on to legislation that brings awareness to Cystic Fibrosis,” said state Rep. Mike Mueller (R-Linden). “My sister recently underwent a double lung transplant, so I understand the many hardships families face in dealing with this terrible disease. I am confident that this bill will expand the availability of resources and care that people suffering from Cystic Fibrosis deserve.”