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Patients and advocacy groups press lawmakers to keep $1 million annual ALS services funding in HB 96
Summary
ALS United Ohio, the ALS Association and people living with ALS urged the Health Committee to preserve the executive budget—s $1,000,000 per-year allocation for ALS care services, describing increased caseloads and high out-of-pocket costs over short patient lifespans.
Multiple speakers representing ALS United Ohio and the ALS Association told the House Health Committee that funding in the executive budget (earmarked in HB 96) plays a direct role in services for people with amyotrophic lateral sclerosis.
Marilyn Seymour (ALS United Ohio) described services the group provides — case management, equipment loans and home-visit support — and asked the committee to continue the $1,000,000 annual allocation already in the executive budget (line item referenced in testimony as LSC red book, table in HB 96). Trish Short, a woman living with ALS, recounted being diagnosed on 04/25/2024, described rapid functional decline and said equipment loans and grants had been essential for home care and survival.
Lindsay Jack (ALS Association) added that the association provided services to 444 Ohioans during the past appropriation cycle and that the annual per-family cost of care can exceed $82,500; both organizations urged continuing the $1,000,000 per fiscal year appropriation to sustain and expand services, particularly in rural areas.
Committee members asked about program funding mixes, reliance on donations and the extent to which the state dollars would reach rural communities; witnesses said around three-quarters of revenue for these nonprofits comes from donations and that state funds help close gaps and extend outreach to underserved counties.
No committee vote was taken; witnesses asked legislators to retain the monies in final budget language.
