How the SOAR Act could benefit supplemental oxygen users

Oxygen is necessary for sustaining human life. Most people find the concentration of oxygen in room air (about 21%) to be adequate. For patients with pulmonary fibrosis, this concentration is often inadequate, making supplemental oxygen a life-sustaining necessity.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I presented with a cough, shortness of breath, and clubbed fingers. My oxygen saturation while sitting ranged from 96%-98%.

It wasn’t until the fall of 2019 that I required supplemental oxygen, which is typically prescribed when a patient’s oxygen levels drop below 88%.

Initially, I was on 2 liters per minute (lpm), to be used primarily while exercising in pulmonary rehabilitation. At night, the oxygen integrated into my continuous positive air pressure, or CPAP, machine, which I used following a diagnosis of sleep apnea.

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My use of supplemental oxygen increased as my IPF worsened. By early 2021, I was using 7 lpm to walk across the room. Shortly before I received the call with a lung offer that July, my oxygen provider delivered a 10 lpm concentrator to my home.

Supplemental oxygen, when part of a treatment plan, can improve a patient’s quality of life. However, many people in the U.S. struggle to access the kind of oxygen they need.

The American Lung Association explains the issue on its website: “In the early 2000s, Medicare introduced competitive bidding to lower costs and promote competition among durable medical equipment (DME) companies. Instead, supplemental oxygen, especially liquid oxygen, became a hot commodity.” As a result, “companies are changing out liquid oxygen tanks for compressed oxygen, which is cheaper, heavier and doesn’t last as long.”

The time has come for oxygen reform.

Enter the SOAR Act

I used supplemental oxygen until I received my bilateral lung transplant in July 2021. I have no complaints about my DME provider or the quality of service I received. I normally had at least 15 tanks, in two different sizes, available to me at any time. The larger ones were E tanks, which each held approximately 680 liters of oxygen.

I also had a home oxygen concentrator capable of delivering 10 lpm. My provider didn’t offer liquid oxygen.

You learn a lot about oxygen when your life depends on it. The E tank allowed me to walk outside my home, go to clinic visits, drive myself to rehabilitation appointments, and get out of the house. E tanks are usually full at about 2,200 pounds per square inch of pressure. When full, an E tank will last about 65 minutes when consumed at 10 lpm. On a good day, the drive from my home to the clinic is 90 minutes, or almost 1.5 E tanks.

Liquid oxygen would’ve greatly improved my mobility and quality of life. A smaller, lighter liquid oxygen container would’ve provided me six or more hours of mobility. Oxygen suppliers, at the contracted rates, cannot provide liquid oxygen at sustainable profit margins. When the rules affect patient care, it’s time to change the rules. That’s where members of the PF community need to join forces to effect change.

In February, Sen. Bill Cassidy of Louisiana, along with Sens. Mark R. Warner of Virginia and Amy Klobuchar of Minnesota, introduced the Supplemental Oxygen Access Reform (SOAR) Act of 2024 (S.3821). Sen. Gary C. Peters of Michigan became another co-sponsor in April, with Sen. Marsha Blackburn of Tennessee joining this month.

In March, Rep. David G. Valadao of California sponsored H.R.7829, a bill identical to S.3821, along with Reps. Larry Bucshon of Indiana, Adrian Smith of Nebraska, and Julia Brownley of California. Since then, 15 additional representatives have signed on as co-sponsors.

The summary of the Senate’s version of the act reads:

“The bill provides for separate payments, indexed to inflation, of oxygen and related equipment, supplies, and services under Medicare (rather than under the competitive acquisition program). It also specifically covers services that are provided by respiratory therapists under Medicare and provides for an additional payment adjustment for these services.

Additionally, the bill (1) requires the Centers for Medicare & Medicaid Services to develop an electronic template for providers to use when prescribing oxygen and related equipment, supplies, and services; and (2) establishes certain rights for beneficiaries receiving these items and services, such as the right to choose their suppliers and to receive clear communications and be informed about the services provided.”

Your call to action today is to reach out to your elected officials in Congress to share your story or that of a loved one who has required supplemental oxygen. Tell them that you support the SOAR Act. Your voice will help each of us to make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.