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ALS United Mid-Atlantic Advocates for Insurance Coverage of ALS Treatments

2025 began with news of more challenges for insuring and accessing ALS treatments. Endpoints News reported on January 2, 2025, that Blue Cross Blue Shield providing services to parts of Pennsylvania says it will not cover some therapies granted accelerated approval for at least 18 months after the FDA signs off.

ALS patients, caregivers, and advocates all feel the urgency of approving effective treatments and therapies as quickly as possible. Every moment counts. If the FDA approves a new treatment, it is vital that the treatments also be accessible to those people with ALS who are seeking therapies that are best for them.

Concerns and questions about insurance are not new. ALS United Mid-Atlantic social workers and nurses are always staying on top of the latest in insurance news and are here to educate patients and guide them through this complicated process. In addition to direct care, ALS United Mid-Atlantic joins ALS United advocates from across the country to advocate for policies that ensure that people with ALS retain the insurance coverage they need to access treatments and therapies as recommended by their doctors.

“Our team at ALS United Mid-Atlantic takes all aspects of ALS care seriously, including insurance coverage,” said Steve Spaulding, MA, Director of Care Services. “We will continue to advocate for greater funding of ALS research, more urgency to approve effective treatments, and for the treatments that are approved to receive adequate insurance coverage so that everybody affected by ALS can access the therapies they need.”

ALS United Mid-Atlantic serves over 1,200 people living with ALS each year in Pennsylvania, New Jersey, and Delaware. Click here to join us as an ALS advocate.

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