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Advocates Urge Senate Health Committee to Keep $1M-a-Year ALS Line in HB96
Summary
Representatives of ALS nonprofits and people with ALS told the Senate Health Committee that the executive and House budgets include $1,000,000 per year for ALS care services and urged the Senate to maintain that funding in House Bill 96.
Marlene Seymour, representing ALS United Ohio, told the Senate Health Committee she was asking lawmakers “to support continuing $1,000,000 per year” for ALS care services that are already in the executive and House budgets.
“ALS is a progressive terminal neurodegenerative disease that destroys the connections between the brain and the muscles,” Seymour said, describing how the condition “gradually robs people of the ability to speak, eat, walk and eventually to breathe.” She asked the committee to preserve the allocation in House Bill 96 and pointed senators to the line-item language and a nonprofit report documenting how the prior appropriation was spent.
The ALS Association and families affected by the disease echoed that message. Lindsay Jack, testifying for the ALS Association, said the group’s services were “critical to the well-being of ALS patients, caregivers, and their families” and that previous state support helped the association provide durable medical equipment, assistive technology and care coordination to hundreds of Ohioans.
John Collins and Cynthia Collins described how ALS changed their household: Cynthia Collins said her husband “can't work” and that grants and equipment from ALS organizations have been essential. John Collins, who spoke briefly, and his wife detailed gaps in insurance coverage and how nonprofit grants and equipment loans made otherwise-unaffordable care and aids available to them.
Witnesses repeatedly tied the request to a specific budget line: Marlene Seymour cited the adjusted line item 440,485 in House Bill 96 and asked senators to maintain the $1,000,000 per fiscal year allocation. Committee members did not take a vote during the witness panel. The speakers asked only for the Senate to retain the line-item funding in the final budget.
The testimony included specific program details: nonprofits said they provide case management by nurses and social workers, equipment loans (including ventilators and augmentative communication devices), caregiver education, home visits and small financial grants for people who do not get full coverage from Medicare or private insurers.
Supporters emphasized rising demand: ALS United Ohio said its patient population grew nearly 20 percent over five years and that last year the organization served 587 people in Ohio; the ALS Association said it served 444 Ohioans last year, including 60 military veterans.
The committee did not make a formal decision at the hearing. Advocates asked senators to keep the as-introduced language in HB96 so state dollars would continue to be available for nonprofit-led clinical support, equipment and care coordination.
Provided documents and witnesses’ remarks point senators to the bill language and to the statewide provider reports the groups submitted to the committee.
