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Committee hears bill to establish Amyloidosis Awareness Day; sponsor cites racial genetic risk and limited local treatment access
Summary
A sponsor presented HB 103 to establish May 8 as Amyloidosis Awareness Day in Missouri. The sponsor and committee discussed the disease's underdiagnosis, its higher hereditary risk in some Black Americans, and limited specialized treatment centers in Kansas City and St. Louis; the committee recorded no opposition and no vote at the hearing.
A bill to establish May 8 as Amyloidosis Awareness Day in Missouri was presented to the Special Committee on Tourism during a public hearing.
The sponsor (identified in the hearing only as the bill’s representative) described amyloidosis as a rare and frequently underdiagnosed condition caused by buildup of misfolded proteins that can lead to organ damage and death. The sponsor said the disease often goes undetected until advanced stages and described two common U.S. forms: light-chain amyloidosis and transthyretin amyloidosis.
The sponsor said research indicates a hereditary variant (V122I) is carried by roughly 3–4 percent of Black Americans and said hereditary forms warrant attention because they can substantially raise cardiac risk with age. The sponsor noted that specialized treatment access in Missouri has been limited, citing that historically there were only two facilities in the state — one on the Kansas City side and one in St. Louis — that were familiar with the disease and its treatment pathways.
The sponsor said the bill had passed the committee and the House in a prior session and was expected to move more smoothly this year. The sponsor noted recent FDA developments in therapies for amyloidosis and that the cost of treatments can be high; the sponsor said people had paid significant amounts out of pocket in some cases.
Taney County Health Director Lisa Marshall was identified in the hearing as present in the gallery; no additional witnesses testified during the hearing on the record. The committee recorded no opposition and took no vote at the hearing.
