Today, on World Oxygen Day, several national health organizations have highlighted the experiences of Americans who rely on supplemental oxygen and called for urgent legislative changes. The coalition is urging Congress to pass the Supplemental Oxygen Access Reform Act (SOAR Act), known as S. 1406/H.R. 2902.
The SOAR Act aims to improve access to appropriate types and levels of oxygen for Medicare beneficiaries who depend on it for daily activities such as shopping, attending medical appointments, and spending time with family. Advocates argue that current limitations leave many patients unable to live independently or participate fully in community life.
Colleen Connor, an advocate living with pulmonary arterial hypertension, described how changes in Medicare reimbursement policies affected her ability to stay active: “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.
Mary Kitlowski shared her challenges living with primary ciliary dyskinesia: “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 Kitlowski. “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.
Tomisa Starr explained how her condition affects daily decisions: “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.
Janet Mockovciak from the Foundation for Sarcoidosis Research added: “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.”
PFF Ambassador Lee Fogle spoke about his experience: “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 over 30 health groups—including organizations such as American Lung Association—sent a letter asking Congress members for support of the SOAR Act.
Organizations supporting this effort include:
- 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
