This week, bills to address everyday challenges faced by individuals with spinal muscular atrophy (SMA) took important steps forward in the U.S. Congress.
A key aviation bill that includes a section that will make air travel safer and more accessible for passengers with disabilities, including SMA, was approved by the U.S. House of Representatives by a vote of 351 to 69. Among other things, the legislation will strengthen the disability complaint system, publish cargo hold dimensions, update aircraft accessibility standards, and determine the technical and economic feasibility of accommodating passengers in wheelchairs in the main cabin. Cure SMA joined other national organizations in support of the disability provisions. The aviation bill now awaits action in the U.S. Senate.
Separately, a key U.S. Senate Committee advanced (17 to 3) emergency preparedness legislation focused on future pandemics, natural disasters, and other emergencies. The legislation includes provisions requested by Cure SMA that will ensure federal, state, and local governments are better prepared to meet and respond to the needs of individuals with SMA and other disabilities during times of emergency. In particular, the legislation prohibits discrimination on the basis of disability in accessing care, equipment, and services and provides technical assistance to states and communities to better accommodate the unique challenges faced by people with disabilities and older adults. This legislation must still be considered by the full U.S. Senate and House.
While additional legislative steps are required for these bills to become law, this week’s action is the result of the strong advocacy of the SMA community. Individuals with SMA and other supporters can learn more about Cure SMA advocacy through its Advocacy Information Center and Advocacy Action Center.