“This legislation will be a lifeline to families, like Chloe Barnes’, who have devoted their lives to a vision of a world where every rare disease has a treatment option,” said Rep. Alice Mann (DFL – Lakeville). “My hope is that this will help extend the highest standard of health care to people with all medical conditions.”
The bill will also identify problems faced by patients with a rare disease when changing health plans, and include recommendations on how to remove obstacles faced by those patients in finding a new health plan that meets their needs.
The council will be named after two-year-old Chloe Barnes, who in 2010 lost her life to a rare degenerative disease, metachromatic leukodystrophy, which has no cure.
Rep. Alice Mann has served patients at Northfield Hospital’s emergency room and the Lakeville Family Health Clinic as a family practice physician.