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In this photo provided by Becky Mourey, Becky Mourey, center, and her husband Jim, left, meet with representatives for Illinois Rep. Jan Schakowsky at her offices on Capitol Hill, Washington DC in May 2022. Mourey and other ALS patients spent more than two years advocating for the approval of the new drug, Relyvrio, a treatment for ALS. Patients say they are now facing insurance and financial hurdles to access the drug, which costs $158,000. (Nicole Cimbura via AP)

In this photo provided by Becky Mourey, Becky Mourey, center, and her husband Jim, left, meet with representatives for Illinois Rep. Jan Schakowsky at her offices on Capitol Hill, Washington DC in May 2022. Mourey and other ALS patients spent more than two years advocating for the approval of the new drug, Relyvrio, a treatment for ALS. Patients say they are now facing insurance and financial hurdles to access the drug, which costs $158,000. (Nicole Cimbura via AP)

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