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Lawmakers hear patients urge May be designated Myositis Awareness Month
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Summary
Representative Sadler introduced HCR 4 to designate May as Myositis Awareness Month. Patients and family members testified about diagnostic delays, limited treatments, and the personal burden of myositis; the committee tentatively agreed an amendment to remove the year could be offered at a later hearing.
Representative Dan Sadler introduced HCR 4 on March 17, asking the Senate Health and Social Services Committee to designate May as Myositis Awareness Month in Alaska. He said awareness could help clinicians recognize symptoms sooner, encourage research and bring support to those living with the rare autoimmune diseases collectively called myositis.
"That's the basis for HCR 4 to establish myositis awareness month in Alaska," Sadler told the committee, explaining the resolution's goal of increasing recognition of symptoms and improving access to care.
Patient testimony included Laura Volden of the Myositis Association, who said her diagnosis of inclusion body myositis (IBM) took years and described progressive loss of muscle function, swallowing difficulties and respiratory risk. "I had inclusion body myositis with dysphagia... For IBM, there's no treatment, and as of today, there is no cure," Volden said, describing long diagnostic delays and the complexity of care.
Dominique and Christine Johnson described their daughter Addie's diagnosis with juvenile myositis at age 4, the burden of repeated out-of-state specialist visits and the difficulty securing insurance approvals for off-label or non-FDA-approved treatments. Eight-year-old Addie spoke directly to the committee: "I'm 8 years old, and I have something called juvenile myositis... When people know about myositis, it helps kids like me feel seen and understood," she said.
Senator Tobin asked the sponsor whether the resolution's reference to "2025" could be struck so May would be designated in perpetuity; Representative Sadler's staff agreed that change would be acceptable as an amendment at the next hearing. The committee set the resolution aside for further consideration after receiving invited testimony from patients and families.
