Advancing Advocacy Efforts with our ALS Community

It’s estimated over 16,000 people across the country are living with ALS at any given time. We know that in order to achieve our vision of seeing a world free of ALS, we have to work together. In the past several months, we’ve joined our greater ALS community to advance three advocacy efforts to support people living with ALS: 

ALS Disability Insurance Access Act

We are one of five patient advocacy organizations that urged members of Congress to co-sponsor and pass the bipartisan ALS Disability Insurance Act. The bill would waive the five-month Social Security Disability Insurance (SSDI) waiting period for people with ALS. Our ALS community group letter urged members of Congress to co-sponsor the ALS Disability Insurance Access Act for Social Security Disability Insurance. 

This bill would ensure our families living with ALS can access their SSDI benefits when they need them. Not in five months. Now.  

Safeguarding Medicare Access to Respiratory Therapy (SMART) Act

We signed a letter of support to Representatives Morgan Griffith and Peter Welch for their legislation, the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act. The legislation would reverse the Centers for Medicare and Medicaid Services (CMS) decision to add noninvasive ventilators (NIV) to the agency’s competitive bidding program. 

The CMS decision to add non-invasive ventilators to its competitive bidding program could seriously hurt people living with ALS who need NIV in their daily lives. “The change to the competitive bidding process will limit the independence of people living with ALS by reducing their access to therapy providers and devices, possibly even restricting them to non-portable devices. Furthermore, this will negatively impact the ALS standard of care by reducing access to respiratory therapy support and needed equipment,” explains Lauren Webb, our Director of Support Services and Education.  

Genetic Counselor Services Act of 2019

This bipartisan legislation, the Access to Genetic Counselor Services Act of 2019, would authorize reimbursement for professional services delivered to Medicare beneficiaries by certified genetic counselors. We joined our neuromuscular disease (NMD) community in support of this legislation. 

Many neuromuscular diseases can only be identified after a lengthy and oftentimes complicated journey. There is no test for ALS. Therefore, obtaining a definitive genetic result is often a critical step in diagnosis. Allowing certified genetic counselors to be reimbursed by Medicare for their services would enable more people living with ALS to receive the information and services they need to access genetic testing and start receiving the support they need to living with ALS sooner.   

We’re committed to supporting our Les Turner ALS family every step of the way. And we are proud to fight with people living with ALS in our shared effort to see these legislative efforts take affect. Make sure you follow us on Facebook and Twitter for updates on our advocacy.