Commentary: Individuals struggling for oxygen need Congress to step up
I have hiked dozens of 14,000-foot peaks and completed nearly 800 deep-sea dives, so I am not averse to a challenge.
Now living with a chronic lung disease, I face my biggest challenge yet: accessing the most basic human necessity, oxygen.
Shortly after moving to Newport in 2015, I noticed that hikes became more physically challenging. Then came the day that changed my life forever. During a scuba diving trip in 2018, just after my ascent from the water, I began to struggle to swim and was unable to move my lower body. I was immediately put on emergency oxygen, rushed ashore, taken to the emergency room and then a decompression chamber—twice. Since I had 796 dives under my belt, I was determined to find out why this happened. After several tests and a second opinion, I was diagnosed with pulmonary fibrosis, a chronic and progressive lung disease.
Over the next few years, as my breathing started to decline, I was prescribed supplemental oxygen. Unfortunately, because of my insurance coverage, I was only able to get large steel oxygen tanks, which need to be moved around on a cart, rather than lighter, more portable modalities like liquid oxygen that can be easily transported.
Because my active lifestyle is so important to me, I spent nearly $4,000 out of pocket to purchase a state-of-the-art oxygen concentrator that I can easily wear as a backpack.
Despite covering the high cost of this equipment, I still encountered problems in accessing care. I was once made to wait four days for more oxygen when my oxygen concentrator was no longer sufficient, and I was running out of air. It was an unnecessary healthcare mess that left me literally breathless.
Unfortunately, my story is not unique. More than 1.5 million people in the U.S. rely on supplemental oxygen, and too many of them face similar challenges.
This is why I am fighting for solutions in Congress like the Supplemental Oxygen Access Reform (SOAR) Act (S. 1406/H.R. 2902) to help people like me get access to the right type and level of oxygen we need. This bipartisan bill would help ensure people with complex respiratory conditions can access appropriate supplemental oxygen equipment and services.
Like many on supplemental oxygen, I need to calculate where I am going, how long I will be gone, and the effort it will take to ensure that I have enough oxygen while I am out. No one should be trapped in their homes, especially when solutions like liquid oxygen and other portable oxygen modalities are available to support living active, independent lives.
Fortunately, the SOAR Act offers hope. This bipartisan bill would improve access to liquid oxygen for whom it is medically necessary, enhance access to respiratory therapy, and create a standardized template for oxygen prescriptions to protect oxygen users. By establishing a separate payment rate for liquid oxygen and permanently removing oxygen from Medicare’s competitive bidding program – which historically has caused accessibility issues for individuals with high-flow oxygen needs – more people would be able to access the care they need to move, breathe, and live freely.
I am calling on Senators Ron Wyden and Jeff Merkley to cosponsor this bill and help push it across the finish line. For individuals needing supplemental oxygen, the SOAR Act will offer a chance to be more active, more independent, and more secure in their ability to breathe.
Keith Nelson is a Newport resident and an advocate for the American Lung Association living with pulmonary fibrosis.