ALS Association Board Member Urges Congress to Protect the Right to Breathe


Tommy May, a member of The ALS Association National Board of Trustees, published a column in Morning Consult, a leading digital media platform among lawmakers, today urging Congress to protect access to noninvasive ventilators. May was diagnosed with ALS in 2005. He has used a ventilator since 2013 when his disease progression made it difficult for him to breathe on his own.

“Under a new rule created by the agency that runs Medicare, noninvasive ventilators will be included in the Competitive Bidding Program (CBP) for Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS). Under this new system, the delivery of the respiratory care and services I, and many like me, rely on will be severely disrupted and lead to a potentially dangerous shortage of this equipment,” May wrote.

He explained: “A bipartisan bill, called the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act of 2019, was recently introduced in Congress. The bill would remove noninvasive ventilators from Medicare’s competitive bidding program for five years to allow time for stakeholders to work with Medicare to ensure access to these devices is safeguarded.”

Read the whole column here

We talked to May about access to assistive technology.

“There is nothing more critical right now – other than finding a cure – than making sure that money does not get in the way of saving somebody’s life,” he said. Watch and share Tommy’s story.

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