In the United States, fifteen people will be diagnosed with amyotrophic lateral sclerosis (ALS) today. Ninety minutes from now, someone will either be told they have ALS—or they will die from it. Thousands of Americans are living with ALS — each hoping for a cure. But for now, there is no cure.
ALS affects each patient differently, but those with ALS can expect progressive weakness and the eventual loss of everyday functions like walking, speaking, swallowing — and even breathing. Unfortunately, ALS can also significantly shorten someone’s life. According to the ALS Association, only half of those with ALS live three or more years after diagnosis.
As a child, I was introduced to ALS (commonly referred to as Lou Gehrig’s disease) because a family member was diagnosed and later died from the disease.
As a respiratory therapist (RT), I have cared for many people with ALS. For patients with ALS who could no longer breathe on their own, I have provided breathing support through complex breathing machines called ventilators. Like many other Americans, I have also dumped icy water over my head to help raise money as part of the Ice Bucket Challenge, a viral fundraising sensation that helped raise well over one hundred million dollars for ALS research.
More recently, I sat in my kitchen, talking to a close friend about his mother’s battle with ALS. We talked about her progress — and how she fears that each birthday celebration or Christmas dinner — might be her last.
So, I know ALS. I’ve seen firsthand the devastating effects of the disease. I know that, as a respiratory therapist, there is only so much I can do. But, what I can do is important — as I can help them breathe. Sadly, I’m compelled to highlight a new threat for individuals who deal with the disease.
Many patients may lose access to life-sustaining equipment and clinical support soon due to the inclusion of complex breathing machines (noninvasive ventilators) in a Centers for Medicare and Medicaid Services (CMS) competitive bidding program. These devices assist patients with ALS and other serious conditions who struggle to breathe due to their illness. They also allow, with the clinical support from respiratory therapists, individuals to live at home, instead of inside a hospital room or other care facility.
If access to the proper devices and services is reduced, the likelihood exists that patients relying on these devices will have to utilize emergency departments more, be hospitalized more, and stay in the hospital for longer periods of time. These results will likely increase costs to Medicare and Medicaid programs. Many organizations, like the ALS Association, American Association for Respiratory Care, American Lung Association, American Thoracic Society, Muscular Dystrophy Association, National Association for Medical Direction of Respiratory Care, and others have asked that noninvasive ventilators be excluded from the next round of competitive bidding.
To be sure, the intent of the competitive bidding program is reasonable, as it strives to reduce out-of-pocket costs to the beneficiary and save money for the Medicare program. That said, patients who rely on noninvasive ventilators are too vulnerable to be subjected to the lowest bidder for their equipment and services. ALS patients, such as J. Thomas May, who recently wrote about what this change could mean for him, need reliable noninvasive ventilators and competent respiratory therapists each day.
As a respiratory therapist and patient advocate, I join others in supporting the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act that would delay the inclusion of noninvasive ventilators from the competitive bidding program for five years. The SMART Act calls for a panel of experts to convene and update national coverage policies that more accurately reflect new advancements in technology and science. This would provide the best path forward for the future utilization of noninvasive ventilation for people who rely on it each day to live.
Pete Frates, the founder of the Ice Bucket Challenge, died from his disease, but the impact that he and his family have had on funding research for ALS will forever be recognized. Patients with ALS, like former Obama administration staffer Brian Wallach, have a reason for hope, as exciting new clinical trials will soon be underway. Wallach and his wife Sandra are leading additional efforts to bring more attention to ALS and a cure.
Yet until a cure is found, we must continue to provide high-quality noninvasive ventilation devices and support to those patients who wake each day knowing they can’t breathe on their own.
I urge Congress to pass the SMART Act. I also urge members of Congress to consider just how harmful a competitive bidding program may be for patients with serious illness. And I implore Congress to consider that a devastating diagnosis like ALS is enough alone for anyone to endure and that worrying about not receiving quality respiratory support is simply unnecessary.
J. Brady Scott is a respiratory therapist and associate professor in the Department of Cardiopulmonary Sciences, Division of Respiratory Care, College of Health Sciences at Rush University.