For many people, going to the grocery store, stopping at the post office or taking a college course requires little second thought. But for patients like me who rely on supplemental oxygen, these activities require careful consideration of how much oxygen I need to bring and whether it is safe to get it home safely before it runs out. It was my reality for a decade when I relied on supplemental medical oxygen to help me manage interstitial lung disease with progressive fibrosis, which seriously affected my ability to stay active, in addition to the challenges of scleroderma and pulmonary hypertension.
Due to these conditions, I rely on supplementing oxygen to breathe. While I was happy to receive supplemental oxygen at home (rather than receiving care in a hospital or nursing facility, my condition basically made me a home at home with little chance to go outside to participate in my community.
Transmitting stable oxygen through my nose cannula requires me to carry the heavy tank in a rolling car and must be replaced every 45 minutes. Due to these restrictions, the appointment of doctors has become a difficult task, and overnight trips are nearly impossible. In short, leaving the house became a big work, and there were many days when I felt like a prisoner at home.
Alternative options exist, but there are still limited options for me and thousands of others. For example, liquid oxygen is lighter, more portable and provides higher oxygen for people with advanced lung disease.
Unfortunately, outdated Medicare policies have made the device nearly inaccessible to patients in the community. In 2011, Medicare implemented a competitive bidding program to replenish oxygen, including liquid oxygen. While the goal is to reduce costs, the plan places the payment rate for liquid oxygen below the actual costs provided by the supplier. As a result, for patients, liquid oxygen options are now few, even other forms of insurance. In fact, liquid oxygen simply cannot be delivered in much of the country today.
Thankfully, Congress will have a chance to reverse these unexpected consequences. House members, including California Representative David Valadao (CA-22) and Julia Brownley (CA-26), introduced the Supplementary Oxygen Access Reform (SOAR) Act (S. 1406/hr 2902), which would better relate to health insurance payments to care costs and improving all forms of auxiliary uniform access. Specifically, the legislation will stabilize payments for liquid oxygen and ensure that patients in need of such treatment are acceptable.
Importantly, the bill will also ensure that patients receive respiratory therapist services through their oxygen providers. Without proper guidance, patients who rely on supplemental oxygen will often feel confused, delayed and worst-case equipment abuse. These professionals are essential to help patients manage complex conditions and ensure safe and effective use of oxygen equipment.
The bill also articulates very specific patient protection measures and encodes the patient’s bill of rights, all of which will ensure that individuals receiving supplemental oxygen in the family and their suppliers are aware of the requirements regarding equipment, communications and care options.
If passed, these two legislations will have an impact on me and countless others. With the support of a lightweight portable liquid oxygen and respiratory therapist, I had the flexibility to complete a lifetime goal that was left-completed with my undergraduate degree in mathematics.
Living in over 30 years of complex, chronic disease life has taught me the importance of not only for myself, but for others. That's why I would like to thank Valadao's representative and Brownley for leading the Soar bill and call on members of Congress to support this critical legislation. It can have a great impact on the lives of all individuals and families with respiratory diseases.
Photo: Skodonnell, Getty Images
Tomisa Starr is a patient advocate who manages a variety of chronic diseases including progressive fibrosis interstitial pulmonary disease, scleroderma, and pulmonary hypertension. She lives in Sacramento, California.
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