LANSING, Mich., March 19, 2024 ~ Michigan lawmakers are showing a strong bipartisan front as they consider House Bill 4167, a measure that seeks to establish an advisory council on rare diseases within the state.
The proposed council, comprising 19 members, aims to guide and inform legislative decision-making by providing resources and support for patients and caregivers. Although the council would lack legal authority, its creation is seen as a significant step in addressing the challenges faced by those living with rare conditions.
PODCAST:
March 16, 2024 ~ 760 WJR‘s Marie Osborne reports on Michigan House Bill 4167, which would establish a Rare Disease Advisory Council in Michigan, providing a statewide forum for patients, caregivers, medical experts, and healthcare providers to analyze the needs of the community and make recommendations on how to improve public policy related to rare diseases. The bill has passed the State House and the State Senate Health Policy Committee, but is stalled in the State Senate despite receiving bi-partisan support. Twenty-five other states have similar councils. Laura Bonnell, founder and CEO of the Bonnell Foundation for Cystic Fibrosis is advocating for the bill’s passage.
(CONTINUED) The bill, sponsored by legislators from both sides of the aisle, has been lauded for its potential to enhance the lives of rare disease patients by fostering a better understanding of their needs at the state policy level. WJR Senior News Analyst Marie Osborne reported on the development, noting that the council would serve as a valuable asset to families like that of Emmy Hicks, whose children suffer from Lissencephaly (LIS), a rare brain disorder. The proposed legislation underscores Michigan’s commitment to the rare disease community and reflects a growing trend of patient-centric policymaking.
Supporters of House Bill 4167 argue that establishing the council is a critical move towards ensuring that the voices of the rare disease community are heard. By focusing on the unique challenges posed by rare diseases, the bill seeks to improve outcomes and provide targeted assistance to those who often face significant obstacles in accessing adequate care and support. As the bill moves through the legislative process, advocates are hopeful that Michigan will lead the way in providing a model for other states to follow in addressing the complexities associated with rare diseases.
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