Why passing the SOAR Act would mean no one has to breathe in uncertainty

Letters to the Beacon | May 16, 2026

When a loved one close to you has a chronic condition that affects their daily life, there are too many ‘what ifs.’ My sister managed Chronic Obstructive Pulmonary Disease (COPD) for 25 years and relied on portable oxygen to live life to the fullest, but it also brought fear, worry, and stress about basic daily tasks: what if the power goes out and I can’t charge the battery for my oxygen concentrator? What if I run out of supplemental oxygen or don’t have the right level while I’m outside my home?

Millions of families deal with these ‘what ifs,’ as respiratory and pulmonary conditions like COPD are all too common in New York and across the US.

My sister, Angie, relied on oxygen 24 hours a day as her condition progressed, and I served as her family caregiver.

Throughout her COPD journey, she faced many challenges and barriers to care that no family should have to face.

Liquid oxygen, for example, which provides a high-liter continuous-flow oxygen supply, was quite literally a life source for Angie, allowing her to travel across multiple states and spend time with her grandchildren. When our family moved from New York to New Mexico to Texas, and eventually back to New York, each state had inconsistencies in the types of oxygen therapy offered, and liquid oxygen was virtually impossible to find. She also dealt with limited access to respiratory specialists, long wait times, and limited education on how to manage symptom flare-ups or oxygen equipment. Patients and families deserve better: both in access and in education to understand their options for oxygen therapy and to remove the ‘what ifs’ that plague families like ours.

Our family’s journey demonstrates the need for system-wide Medicare oxygen reform, so COPD patients don’t feel isolated or uninformed about oxygen therapy. Removing the ‘what ifs’ by addressing gaps in care would help more patients and families manage care more confidently. That’s why I strongly support legislation like the Supplemental Oxygen Access Reform Act (S. 1406/H.R. 2902): bipartisan legislation that would expand access to oxygen services and equipment, including liquid oxygen. This legislation will help more individuals access care that better aligns with their clinical condition and ensure they have the right type and level of oxygen based on their needs.

The SOAR Act would not only help more patients access oxygen but also establish Medicare payment for respiratory therapy, which my sister greatly benefited from through better care coordination and support. Helping patients and families have reliable access to respiratory therapy services helps avoid flare-ups and improves patient outcomes. At its core, this bill is not only about ensuring supplemental oxygen is not just available, but reliably accessible, appropriately supported, and clearly understood—so patients with COPD and other respiratory conditions can live with dignity, safety, and as much independence as possible.

I still remember my sister explaining how it felt trying to breathe as her COPD progressed: like an elephant sitting on your chest, with duct tape over your mouth and nose. No one should have to live in constant fear of losing their ability to breathe without access to their oxygen care. That’s why the SOAR Act is so important.

To honor Angie’s legacy, I share our family’s perspective on the difficulties of accessing oxygen and the right treatment options. I encourage New York lawmakers to support the SOAR Act to ensure the Medicare oxygen benefit can meet the needs of families facing the same challenges we did.

What if the “what ifs” didn’t have to exist? That’s the legacy my sister would be proud to leave behind.

Annette Fargnoli
COPD Foundation NYS captain