ALS Association Joins Coalition Partners to Lead Fight for Access to Noninvasive Ventilators

A bill championed by The ALS Association was introduced in Congress today that would remove noninvasive ventilators from Medicare’s competitive bidding program. Reps. Morgan Griffith (R-Va.), Peter Welch (D-Vt.), Gus Bilirakis (R-Fl.), John Larson (D-Ct.), and Darren Soto (D-Fl.) have introduced H.R.4945, the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019.

Noninvasive ventilators provide essential breathing and life support for Medicare beneficiaries with ALS, the majority of whom die of respiratory failure. These devices allow people with severe breathing issues to remain at home. If noninvasive ventilators are not removed from competitive bidding, Medicare beneficiaries with ALS will experience increased emergency room visits and more frequent and longer admissions to hospitals and nursing homes. 

 The ALS Association has led the fight for access to noninvasive ventilators through Medicare as part of a coalition it formed with the American Association for Respiratory Care and the National Association for the Medical Direction of Respiratory Care, along with other patient, pulmonary and clinical societies and organizations. Click here to see the coalition’s endorsement letter. 

The accepted standard of care requires a respiratory therapist to conduct regular home visits to make sure that the ventilator is working and set up for the patient’s individual needs. Since Medicare only reimburses providers for the device itself and does not pay for respiratory therapist services, providers that are currently able to meet the accepted standard of care by covering the cost of respiratory therapists will not be able to under competitive bidding and the lower Medicare reimbursement that results. Instead, unless the coverage policy is updated, competitive bidding will cause a reduction in access to both ventilators and the necessary clinical support.

“The life expectancy for people with ALS is very short and most eventually die of respiratory failure. Until we find treatments and a cure for ALS, people living with ALS must have access to life-saving noninvasive ventilators so they can stay at home with their families and out of institutions,” said Calaneet Balas, president and CEO of The ALS Association.  

“The Medicare program’s plan to competitively bid noninvasive ventilators will drastically harm access to these medically necessary devices and the clinical care provided by a respiratory therapist.  It must be stopped so people with ALS can live longer lives and live with their families. The ALS Association urges Congress to immediately pass this legislation to protect access to noninvasive ventilators for people living with ALS,” Balas added.

Click here to see the coalition’s full press release.

The ALS Association will continue leading efforts to remove NIV from competitive bidding to protect access to these critically important devices. But Congress needs to hear from you to make this a priority. Click here to take action now!

2 thoughts on “ALS Association Joins Coalition Partners to Lead Fight for Access to Noninvasive Ventilators”

  1. There are treatments showing promise in stopping or slowing the progression of ALS………Please ALSA help fund those therapies and work to have then available to pALS. As stated in the above article “the life expectancy for pALS is very short” we need your help to get early access to therapies such as NurOwn, CuAtsum, Dr. Appel T-regulator etc. If you choose not to or are unable to fund such therapies or advocate for their early release please explain why.
    Thank you,
    Sheila Lowrie


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s