VOICES: Supplemental oxygen reform needed for stronger patient protections

Demeshia Montgomery lives with scleroderma and COPD and is an active patient advocate in the chronic disease community in addition to founding Jacob’s Hugs Registry and The Waiting Room Entertainment, and serving on the board of For Love of Children.   CONTRIBUTED

Demeshia Montgomery lives with scleroderma and COPD and is an active patient advocate in the chronic disease community in addition to founding Jacob’s Hugs Registry and The Waiting Room Entertainment, and serving on the board of For Love of Children.   CONTRIBUTED

Respiratory and pulmonary conditions can be complex, often misunderstood, and may even go undiagnosed for years. Having lived with the rare autoimmune disorder scleroderma since I was 19, I started experiencing breathing difficulties and a persistent cough in 2023. I even began sleeping outdoors to try and get more fresh air into my lungs.

But things suddenly took a turn for the worse. After a series of tests, including a pulmonary function test, echocardiogram, and blood work, doctors told me I had chronic obstructive pulmonary disease (COPD), which had caused two heart attacks due to lung inflammation and scarring. My family and I were terrified for my life. Luckily, with pulmonary rehabilitation and support from respiratory therapists, cardiologists, and the COPD patient community, I’m now able to advocate for myself and others living with COPD or other respiratory and cardiovascular conditions.

For individuals living with COPD, interstitial lung diseases, and other complex conditions, supplemental oxygen is often necessary for them to stay active in their communities, remain in the workforce, and spend time outside the home with friends and family.

While access to supplemental oxygen keeps individuals at home and out of inpatient care settings, outdated Medicare rules, inadequate patient protection, and unstable reimbursement policies keep the appropriate level of care out of reach for many people living with these chronic conditions.

For Medicare beneficiaries living with pulmonary fibrosis, heart disease, pulmonary hypertension, or other chronic conditions that require medical oxygen support, the lack of access to supplemental oxygen is heartbreaking, especially for marginalized communities with limited healthcare resources.

Without having clinically appropriate oxygen support, even traveling to their own pulmonary rehabilitation or doctor’s appointments can be a source of anxiety for those who are unable to access portable oxygen therapy, such as liquid oxygen. There are multiple forms of supplemental oxygen depending on one’s condition or necessary level of oxygen, but Medicare’s current structure often leaves few options.

That’s why I support patient-centered legislation like the Supplemental Oxygen Access Reform (SOAR) Act (S. 1406/H.R. 2902). This bipartisan bill establishes patient protections and puts the needs of COPD patients first. The SOAR Act provides comprehensive reform of Medicare’s oxygen benefit to help individuals on supplemental oxygen in the following way:

  • Stabilizes reimbursement for more modalities of supplemental oxygen so individuals can get the level of oxygen that more appropriately meets their clinical needs, including liquid oxygen.
  • Establishes clear and consistent patient protections.
  • Recognizes the essential role of respiratory therapists.
  • Creates standard documentation requirements to ensure care is not inappropriately denied or delayed.

As someone living with COPD and a passionate advocate, I urge Congress to pass the SOAR Act (S. 1406/ H.R. 2902) to ensure Medicare beneficiaries in need of supplemental oxygen have access to high-quality, clinically appropriate care they need to live active, full lives while still managing their condition. I hope my Ohio lawmakers will cosponsor this bill and act to safeguard access to supplemental oxygen.

Demeshia Montgomery lives with scleroderma and COPD and is an active patient advocate in the chronic disease community in addition to founding Jacob’s Hugs Registry and The Waiting Room Entertainment, and serving on the board of For Love of Children.