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Advocates urge Ohio Senate to keep $1 million-per-year ALS funding in HB 96
Summary
Patients, caregivers and ALS nonprofits told the Senate Health Committee that $1 million per year in the state operating budget is critical for equipment, case management and home supports; witnesses described gaps when insurers denied standard-of-care equipment.
Marlene Seymour, a representative of ALS United Ohio, and witnesses from the national ALS Association and families urged the Ohio Senate Health Committee to keep a $1,000,000-per-year line item for amyotrophic lateral sclerosis (ALS) care in the biennial budget.
The request is already included in the executive budget and the House version of House Bill 96; speakers said the state allocation helps nonprofits provide case management, equipment loans and emergency grants to people living with ALS. "This additional funding from the state will continue to assist in meeting the needs of increasing numbers of patients who contact us for help," Marlene Seymour said in testimony.
Why it matters: ALS is a progressive neurodegenerative disease with no cure; speakers described the short prognosis and mounting out-of-pocket costs. Lindsay Jack of the ALS Association said the average annual cost of care can exceed $82,500 and that state support allows organizations to provide durable medical equipment, augmentative communication devices, home modifications and caregiver supports.
What witnesses told the committee: Seymour described having compiled a state funding outcomes report and asked lawmakers to maintain line item 440,485 in HB 96. She said ALS United Ohio served 587 people last year and has seen patient contacts rise about 20% in five years. Lindsay Jack said the ALS Association provided services to 444 Ohioans in the last appropriation cycle, including 60 veterans, and urged continued funding so providers can reach rural and underserved counties.
Family testimony highlighted gaps when insurers denied equipment that witnesses described as standard of care. John and Cynthia Collins, whose testimony described John’s loss of mobility and speech after diagnosis, credited ALS Association grants and equipment loans with allowing them to retain quality of life. "If Medicare won't pay for it, private insurance won't pay for it either," Cynthia Collins said.
What the testimony did not produce: There was no formal motion or committee vote during the hearing. Witnesses framed the request as budgetary appropriation support rather than new law or program changes.
Ending: Committee members asked no follow-up questions during the public testimonies on ALS; witnesses said they were available for questions and urged lawmakers to preserve the allocated funding in the final Senate budget.
