ALS Patients Are at Risk of Losing Their Right to Breathe

A new Medicare policy will literally take my breath away by making it harder for people like me to access ventilators. I have ALS.

Also known as Lou Gehrig’s Disease, ALS is a degenerative nerve disease that robs people of their ability to walk, talk, eat and eventually breathe. There is no treatment, and there is no cure. It’s always fatal. Without my ventilator to help me breathe, I won’t be around tomorrow.

In 2013, my doctor recommended I use a noninvasive ventilator because the progression of my disease was now making it more challenging for me to breathe on my own. A noninvasive ventilator is a machine that assists me in taking deep-enough and frequent-enough breaths to maintain normal oxygen and carbon dioxide levels.

It helps me complete seemingly basic activities such as sleeping and talking, and I’m able to live more comfortably and independently for now. With the assistance of a respiratory therapist on call 24 hours a day to help me whenever I need it, my noninvasive ventilator has been a godsend.

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

Between 2013 and 2017, 47 percent of home oxygen suppliers closed down in the 10 most populous states because of regulatory burdens associated with the competitive bidding program. People like me can’t afford to absorb the shock of any future disruptions in care delivery that would come with implementing a new, completely untested methodology for pricing respiratory supplies and equipment.

I work with a respiratory therapist, Roxanne, who has literally saved my life. On one occasion, I was traveling when I suddenly realized I wasn’t getting the forced air I needed in my lungs. I called Roxanne in the middle of the night, and she talked me through how to fix the problem, even going so far as to give me instructions on reprogramming the machine over FaceTime.

It’s an incredibly scary situation when you can’t get the air you need to breathe. I thank God that Roxanne was so resourceful and calming.

That kind of personalized care is a lifesaver, yet, the way the bidding program is set up, it means I might have to receive my noninvasive ventilator care from a provider who doesn’t specialize in that kind of critical one-on-one support. My story is echoed by thousands of critically ill patients across the country — some with ALS, others with different types of diseases that make it hard to breathe such as chronic obstructive pulmonary disease. Studies show that noninvasive ventilation helps patients live longer, more independent lives. I am living proof of that.

Given these benefits, we must protect Medicare beneficiaries’ access to home ventilation therapy. A bipartisan bill, called the Safeguarding Medicare Access to Respiratory Therapy 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. To accomplish this, the legislation would also create a technical expert panel that would update national coverage policies for home mechanical ventilator devices so that they reflect technological advancements, peer-reviewed science and, most importantly, remain available to people like me who need them to survive.

As 180 lawmakers in the House of Representatives recently told the Centers for Medicare and Medicaid Services, “even brief delays in access to clinical ventilator support can prove dangerous or even fatal and would likely mean patients are no longer able to receive their care at home.” 

Patients like me need to have confidence in our respiratory care providers. Other than finding a cure for ALS and other chronic diseases that make it nearly impossible to breathe unassisted, the least we can do is make sure people have access to the technology they need to survive, which includes continued access to noninvasive ventilation.

Let’s work together to pass the SMART Act to make sure that nothing gets in the way of our ability to live fully despite our diagnosis.


J. Thomas “Tommy” May serves on the board of trustees of the ALS Association.

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