The SOAR Act is pivotal bipartisan legislation that seeks to ensure that individuals enrolled in Medicare, who rely on supplemental oxygen to breathe, can access the proper type and level of oxygen they need to live full, healthy lives. Supplemental oxygen is essential for daily living, allowing people to shop for groceries, attend medical appointments, and gather with their family. Yet too many people, especially those enrolled in Medicare, cannot access the right type and levels of oxygen they need. This leaves many isolated and effectively trapped in their homes.

Advocate Colleen Connor, who lives with pulmonary arterial hypertension, lost access to liquid oxygen, which has significantly impacted her active lifestyle.

“In 2007, I was diagnosed with pulmonary arterial hypertension, and I started using supplemental oxygen when my children were just 3 and 7 years old. Despite my limitations, thanks to my liquid oxygen system, I was able to stay active, independent, and care for them. I could leave the house for the day, take them to activities, and even enjoy simple moments like walking on the beach,” said Connor. “That freedom was taken from me when my liquid oxygen system was no longer available due to changes in Medicare reimbursement policies. Today, I rely on a heavy E-tank that weighs 16 pounds and requires a cart for transportation. My old liquid oxygen device weighed five pounds, fit into a backpack, and delivered the same amount of oxygen but allowed me to move freely.” Read Connor’s full story here.

“When you are on oxygen, every little hill seems like a mountain. I have to decide if it is worth carrying my oxygen tank because carrying things makes my breathing labored; therefore, the tanks create as much of a problem as they solve,” said Mary Kitlowski, who lives with primary ciliary dyskinesia. “Patients who need oxygen run the gamut, and by limiting the number of tanks they are allowed to get, it forces people to be less active, which in turn makes their lung disease progress faster. There needs to be a change.” Read Kitlowski’s’s full story here.

“For many, going to the grocery store, stopping by the post office, or attending a college class barely requires a second thought. But for patients like me who rely on supplemental oxygen, these activities require careful consideration about how many tanks of oxygen I’ll need to bring and whether I can make it back home safely before my oxygen runs out. This has been my reality in the 10 years that I’ve relied on supplemental medical oxygen to help me manage progressive fibrotic interstitial lung disease, which severely impacts my ability to remain active, in addition to the challenges of living with scleroderma and pulmonary arterial hypertension,” said advocate Tomisa Starr. Read Starr’s full story here.

“Just because a patient requires supplemental oxygen at home doesn’t mean they are homebound. We are individuals who are active in our communities. We have exercise regimens that require movement to better manage our disease. We just need the additional assistance of medical oxygen,” said Janet Mockovciak, Foundation for Sarcoidosis Research Patient Advocate & Volunteer Leader.

“Supplemental oxygen is my superpower." said PFF Ambassador Lee Fogle, who is living with pulmonary fibrosis. "With portable oxygen, I can bike, paddleboard, and do the things I love again. But I’ve had to fight supply companies just to get the tanks my doctor prescribed – it shouldn't be this hard." 

Earlier this year, more than 30 health and medical organizations sent a letter to Congress urging them to support the SOAR Act. Read the full letter here.

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American Academy of Sleep Medicine

American Association for Respiratory Care

American College of Chest Physicians

American Lung Association

American Thoracic Society

COPD Foundation

Cystic Fibrosis Foundation

Foundation for Sarcoidosis Research

Pulmonary Fibrosis Foundation

Respiratory Health Association

Pulmonary Hypertension Association

Running on Air

The Council for Quality Respiratory Care