LANSING —State Reps. Abdullah Hammoud (D-Dearborn) and Jim Ellison (D-Royal Oak) have introduced House Bill 5946, 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. Approximately 1,200 Michigan residents are affected by the disease, with 30,000 children and adults being 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.
This proposal would bring together members of several CF foundations, physicians, nurses, the Michigan Department of Health and Human Services, and CF patients and guardians to tackle key issues pertaining to CF.
“The Cystic Fibrosis Advisory Committee would fight for Michigan families affected by cystic fibrosis by spreading awareness of the symptoms and implications,” said Rep. Hammoud. “My hope is that this advisory committee advocates for patients, as well as research and develop policies needed to improve 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.
Additionally, to coincide with HB 5946, Rep. Ellison introduced House Resolution 331, to declare May 2018 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.”