LANSING, Mich., March 23, 2023 — The Michigan House overwhelmingly voted to pass House Bill 4167, introduced by state Rep. Jason Morgan (D-Ann Arbor), yesterday to create the Rare Disease Advisory Council (RDAC). The purpose of the council is to create a publicly available list of rare diseases and identify the best ways to enhance educational resources, care, treatment and support for those who live with rare diseases, their loved ones and their health care providers.
“Receiving the diagnosis of Becker’s muscular dystrophy when I was 13 was incredibly difficult,” Morgan said. “Going to muscular dystrophy summer camp and seeing my peers thriving in spite of their diagnosis helped me realize what was possible for those who live with this condition. I want to make sure other Michiganders living with rare diseases receive the support they need not only to find the best care but to lead fulfilling lives.”
The Orphan Drug Act defines a rare disease as a disease or condition that impacts less than 200,000 people in the U.S. According to the Genetic and Rare Diseases Information Center in the National Institutes of Health, there are about 10,000 known rare diseases, and collectively, about 1 in 10 people (or 30 million people) in the U.S. have a rare disease.
“While lawmakers make decisions that will directly impact the cystic fibrosis (CF) and rare disease communities in Michigan, we have no official voice at the state level,” said Laura Bonnell of The Bonnell Foundation: Living with Cystic Fibrosis. “Our communities share common concerns, including continued access to telehealth, newborn screening, prior authorization, improved diagnostics, step therapy and more. As a mother of two girls with CF, and the founder of The Bonnell Foundation: Living with CF, I believe the Council is key to gathering stakeholders so we can work together, look out for one another and support those impacted by rare diseases in Michigan.”
“We are thrilled for the rare disease patients and caregivers living in Michigan who will benefit from this important legislation,” said Tara J. Britt, president and founder of the Rare Disease Innovations Institute. “Those with rare diseases suffer from disparities in funding and support. Congratulations to Michigan for addressing this through strategic legislation.”
“Our role as the Michigan Biosciences Industry Association puts us at the intersection of patients and the life sciences industry, where we are working to develop life-changing products and treatments. Those products and treatments are only effective if patients can access them affordably and without unnecessary barriers. Legislation such as the proposed bill is an important step in creating discourse between patients and policymakers that enables informed policy decisions, which can have the greatest benefit to patients, their families and caregivers,” said Stephen Rapundalo, Ph.D., president and CEO of MichBio.
“An RDAC in Michigan will give all stakeholders in the rare disease community an opportunity to make recommendations to Michigan lawmakers on ways to improve the lives of those impacted by a rare disease,” says Heidi Ross, vice president of policy and regulatory affairs, National Organization for Rare Disorders (NORD). “NORD is grateful to Rep. Morgan for his leadership and looks forward to working with him and numerous advocates across Michigan to get this RDAC legislation signed into law.”
Morgan introduced the bill in honor of Rare Disease Advisory Day on Feb. 28. It now moves to the Senate for consideration and a vote.