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Arkansas lawmakers hear pleas for ALS clinics, travel help and respite care as presenters describe access gaps
Summary
Presenters from the ALS Association and UAMS told the Senate Public Health, Welfare and Labor Committee that Arkansas has one specialty clinic, estimates up to 250 people living with ALS statewide, and needs funding for travel, respite care, outreach coordinators and research participation to expand care and clinical-trial access.
Members of the Senate Public Health, Welfare and Labor Committee heard testimony that Arkansas lacks adequate statewide access to multidisciplinary care for people living with amyotrophic lateral sclerosis, commonly called ALS or Lou Gehrig’s disease, and that lawmakers could help by funding travel, respite care and outreach.
Janet Thorn, managing director for the ALS Association Mid-South Territory, told the committee that ALS “means no muscle movement” and emphasized the urgency of early care: the diagnostic process can take about 18 months and average life expectancy after diagnosis is two to five years. She said Arkansas currently has one ALS specialty clinic and that many Arkansans cannot reach neuromuscular specialists and multidisciplinary teams that provide therapies, equipment and clinical trials.
“People have to travel long distances and many simply can’t,” Thorn said, noting the association serves roughly 103 people across the state…
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