ALS report cards show how US states fall short on patient support
No state earned highest score for patient-supporting policies
Written by |
- No state got the highest possible grade on the ALS Association's annual policy report cards.
- Grades reflect insurance, treatment access, genetic discrimination, funding, and caregiver support.
- Lawmakers are urged to improve policies to reduce barriers.
No U.S. state earned the highest possible score on the ALS Association‘s annual ALS State Policy Report Cards for policies supporting people with amyotrophic lateral sclerosis (ALS) this year, and several averaged failing grades.
The report cards are designed to provide a snapshot of how legislatures in all 50 states and Washington, DC, support ALS patients through policies on insurance coverage, access to treatments, genetic discrimination, funding for ALS services, and caregiver support. Scores across these five areas are combined into an overall grade for each state.
The top performing states this year were California, Minnesota, and Massachusetts, while the worst performing states included Wyoming, South Carolina, and West Virginia.
The report cards were released as many state legislatures begin their 2026 sessions, with the association urging lawmakers to pass policies that improve the lives of people with ALS.
The association said the report cards are designed to evaluate lawmakers’ activities and do not necessarily reflect the quality or availability of ALS clinics or care services in a given state.
Investing in care helps families
“With legislative sessions underway, lawmakers in every state have opportunities to improve the lives of constituents living with ALS,” Alex Meixner, vice president of state policy at the ALS Association, said in an association press release. “These report cards are about accountability. State policy decisions have real, immediate consequences for people living with ALS. When states invest in care, remove barriers to coverage, and support caregivers, families are better able to navigate a devastating disease.”
The association grades states on policies including laws that expand access to state-funded insurance coverage, limit delays caused by prior authorization requirements for treatments, and protect people from genetic discrimination by insurers. The scores also reflect whether states allocate funding for ALS care services and adopt policies that provide financial or practical support to family caregivers. Together, these measures are intended to reduce barriers to care and help families manage the disease.
The report found that legislation passed last year led to improvements in the grades of 11 states: Alaska, Iowa, Illinois, Indiana, Massachusetts, Maryland, Montana, North Dakota, Nebraska, Nevada, and Texas. However, three states — Indiana, Michigan, and South Carolina — saw their scores decline after failing to renew funding for ALS care services.
Last year, New York earned straight As across the association’s five key policy priorities. This year, no state earned an overall A grade, and four states had average failing grades.
