Cure SMA participated in the Washington, DC event where the U.S. Department of Health and Human Services (HHS) announced historic action to update and strengthen federal protections against healthcare discrimination based on disability. 

At the event, HHS unveiled the first comprehensive update in more than 40 years to Section 504 of the Rehabilitation Act, the federal law that prohibits discrimination on the basis of disability in programs and activities that receive Federal financial assistance, including healthcare. 

Among other things, the updated Section 504 rule will end the use of discriminatory quality value assessment methods (known as QALYs), adopt new accessibility standards for healthcare websites, mobile apps, and kiosks, and require accessible exam table and weight scale at most hospitals and clinics within two years. “This update is necessary to help combat healthcare discrimination and barriers that still exists today for individuals with spinal muscular atrophy,” said Maynard Friesz, Cure SMA’s Vice President of Policy and Advocacy. 

Cure SMA has actively worked to help break down barriers and combat discriminatory policies that impede access to life-saving healthcare and medical equipment for individuals with SMA and their families. Throughout the COVID pandemic, Cure SMA fought against discriminatory policies that rationed access to ventilators and other care based on disability, sought priority access to COVID vaccines for the SMA community, and urged Governors to expand access and prevent cuts and gaps in caregiving services. In addition, Cure SMA has supported legislation to ban discriminatory policies in healthcare, promote access to lifesaving treatments, and expand access to caregiving services. 

To learn more about the rule, which will go into effect in July, go to the Administration on Community Living summary.