With congressional leaders scheduled to begin work on additional stimulus legislation in response to the COVID-19 pandemic, The ALS Association is continuing to push to include protecting access to noninvasive ventilators (NIV) and to making sure people with ALS can access their Social Security Disability Insurance (SSDI) in the coronavirus response packages. The Association has been fighting for inclusion of these protections since Congress first began considering COVID-19 response legislation.

Medicare’s competitive bidding requirements limits access to noninvasive ventilators – and at a time when COVID-19 is making ventilators more critical to public health than ever. 

The Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R. 4945) would make sure people on Medicare do not lose access to these devices, and to the support from respiratory therapists that patients need. 

“Now more than ever it’s important to make sure that access to noninvasive ventilators is not threatened so that people living with ALS continue to have access to the right equipment and a respiratory therapist who can provide critical support. If the Medicare program’s action to include NIV in competitive bidding is not stopped, people with ALS will have more problems and will end up in the emergency room or institutional care,” said Kathleen Sheehan, vice president of public policy at The ALS Association. 

“Moreover, at a time of both economic uncertainty and strains on the health care system, it is time for Congress to make sure people with ALS have access to the SSDI benefits they have earned as soon as it is needed,” she added. 

The initial stimulus package that was passed and signed into law on March 27 did not include the SMART Act or the ALS Disability Insurance Access Act (H.R. 1407/ S. 578). The ALS Association and its partners and advocates will keep up the fight for access to ventilators and SSDI benefits as part of the continued government response to the COVID-19 outbreak. 

The ALS Association, along with its partners, sent a letter to congressional leaders on April 2 laying out the need for the SMART Act to be included as part of the COVID-19 response and economic stimulus provisions. Sign up to be an advocate to get up-to-date information on how to help educate members of Congress about these policies important to our ALS community.