Contributor: Medicare Needs to Ensure People With ALS Have Access to Clinically Appropriate Respiratory Care

As a person living with amyotrophic lateral sclerosis (ALS), often known as Lou Gehrig’s disease, I tell people that a diagnosis is just part of my story – it’s not the end. Thanks to amazing advances in medicine and technology, ALS patients like me can lead more fulfilling lives. Recently, the ALS Association announced a goal of making ALS a livable disease rather than a fatal one by 2030, and I’m optimistic we will achieve that. As we work to make ALS a more treatable condition, access to state-of-the-art care will be vital.

ALS is a fatal disease that causes nerve cells to stop working and die. As it progresses, your nerves lose the ability to control muscles throughout the body, often leading to paralysis and difficulty breathing. Every year, approximately 5000 Americans are diagnosed with the disease, according to the CDC. Due to breathing difficulties, many of us need a treatment called non-invasive ventilation (NIV), which is a machine that delivers the breathing assistance I need through a facemask, instead of a tube down my airway.

By enabling me to take deep, frequent breaths, NIV empowers me to do things that many people take for granted – such as having a conversation with loved ones and sleeping through the night. My machine also helps me live more independently. Thanks to my NIV, I feel more well-rested, less fatigued and experience fewer headaches. I also don’t have to worry about feeling short of breath as much as I used to.

NIV has been especially important to me during the pandemic. Over the last year, having access to an NIV in my home has enabled me to remain safely at home while avoiding COVID-19 exposure. Along with my NIV, I am fortunate to have a respiratory therapist who is able to assist me at any time day or night. She helps me make sure the ventilator is working correctly and is always available to address issues that may result in unforeseen or urgent, life-threatening respiratory compromise.

Before the pandemic hit, the Medicare program announced plans to put in place a “competitive bidding” process that could have devastated access to non-invasive ventilators for ALS patients. Once COVID-19 hit, access to ventilators of all kinds became extremely critical. That made me even more worried that I might experience disruptions to my care.

Luckily, at the urging of people living with ALS, respiratory therapists, physicians and members of Congress, Medicare revised its policy to temporarily ensure continued access to noninvasive ventilators. The decision came as a huge relief to me because I was able to continue receiving care from my provider without disruption.

But a serious problem remains. While the technology of noninvasive ventilators has advanced a great deal, Medicare policies are still seriously out of date. The ALS Association, along with respiratory therapists and physicians, will continue to push the Medicare program to update policies to reflect state-of-the-art, peer-reviewed science and advancements in technologies to improve access for patients like me. It is important that Medicare establish clear, objective, clinically based criteria and avoid requirements that create unnecessary barriers that threaten patient access to these devices. Medicare must ensure that people living with ALS have full access to the appropriate respiratory equipment and respiratory therapists at home to avoid costly trips to the emergency room, hospital stays or the need for institutional care. Providing the right kind of care will reduce costs across the board.

When the pandemic is finally over, Americans with ALS will still need guarantees that our respiratory care will not be disrupted. Policymakers in Washington must consider permanent fixes so that instead of worrying about having an emergency, folks like me can continue enjoying every precious moment. With help from these policymakers, I hope we continue accessing innovative respiratory care therapies and achieve the goal of making ALS a livable disease.

Author Information

J. Thomas “Tommy” May serves on the Board of Trustees of the ALS Association.