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.
As a result of these conditions, I rely on supplemental oxygen to breathe. While I am thankful to receive supplemental oxygen at home – instead of receiving care in a hospital or nursing facility – my condition essentially renders me homebound with little opportunity to get outside and participate in my community.
A steady stream of oxygen is delivered through my nasal cannula, requiring me to carry a heavy tank in a rolling cart that must be changed every 45 minutes. With these limitations, a doctor’s appointment becomes an exhausting undertaking, and going on an overnight trip is nearly impossible. Put simply, leaving the house becomes quite a production, and there are many days that I feel like a prisoner in my own home.
Alternative options exist, but access remains limited for me and thousands of others. For example, liquid oxygen is lighter, more portable, and delivers higher-flow oxygen for those with advanced lung disease.
Unfortunately, outdated Medicare policy makes this equipment nearly impossible to access for patients across the community. In 2011, Medicare implemented a competitive bidding program for supplemental oxygen, including liquid oxygen. While the intention was to reduce costs, the program drove payment rates for liquid oxygen below the actual cost for suppliers to provide it. As a result, liquid oxygen options are now few and far between for patients – even those on other forms of insurance. In fact, in most parts of the country today, liquid oxygen is not available for home delivery at all.
Thankfully, Congress has a chance to reverse these unintended consequences. Lawmakers in the House of Representatives, including California Representatives David Valadao (CA-22) and Julia Brownley (CA-26), have introduced the Supplemental Oxygen Access Reform (SOAR) Act (S. 1406/H.R. 2902), which would better align Medicare payments with the costs of care and improve patient access to various forms of supplemental oxygen. Specifically, this legislation would stabilize payments for liquid oxygen and ensure patients who need this treatment can receive it.
Importantly, the bill would also ensure that patients have access to respiratory therapist services through their oxygen supplier. Without proper guidance, patients relying on supplemental oxygen often experience confusion, delays, and at worst, misuse of equipment. These professionals are essential to help patients manage their complex conditions and ensure that oxygen equipment is being used safely and effectively.
The bill also clarifies very specific patient protections and codifies a Patient’s Bill of Rights, all of which would ensure that individuals receiving supplemental oxygen in the home – and their suppliers – understand requirements around equipment, communications, and care options.
If passed, this bipartisan legislation would be transformative for me and countless others. With access to lightweight, portable liquid oxygen and the support of respiratory therapists, I could have the flexibility to complete a lifelong goal that’s remained out of reach — finish my undergraduate degree in mathematics.
Living with complex, chronic conditions for over 30 years has taught me the importance of advocating not only for myself but for others navigating similar struggles. That’s why I thank Representatives Valadao and Brownley for leading the SOAR Act and call on other members of Congress to support this critical legislation. It could make a big difference in the lives of all individuals and families living with respiratory disease.
Photo: skodonnell, Getty Images
Tomisa Starr is a patient advocate managing multiple chronic conditions, including progressive fibrotic interstitial lung disease, scleroderma, and pulmonary arterial hypertension. She resides in Sacramento, California.
This post appears through the MedCity Influencers program. Anyone can publish their perspective on business and innovation in healthcare on MedCity News through MedCity Influencers. Click here to find out how.
