Supplemental oxygen is a vital component of treatment for many people with pulmonary hypertension.
Although liquid oxygen offers the highest degree of mobility and highest quality of life for those with high-flow oxygen needs, many oxygen suppliers no longer provide it. The lack of options limits everyday activities and mobility for people with PH and others who use supplemental oxygen. Many people living with pulmonary hypertension can’t access the type, quantity or flow rate of supplemental oxygen their prescribed by their clinicians.
Supplemental oxygen treatment shouldn’t confine people to their homes. Policymakers need to know that oxygen therapy can help people be more active in their communities if they can access the appropriate equipment and therapy type for their conditions.
PHA is working to convince Congress to pass a law to improve access to supplemental oxygen. The Supplemental Oxygen Access Reform Act would increase flexibility for Medicare coverage of oxygen and related equipment. If passed, the legislation would allow people with pulmonary hypertension to more easily access the right type of oxygen treatment to improve their quality of life.
Join PHA’s efforts to educate policymakers
Share your oxygen story
Help us promote the need for better oxygen access. Share your challenges in accessing oxygen or how supplemental oxygen improves your life. Don’t forget to include a photo of you with your equipment (or just a photo of your equipment).
Submit your storyWrite a letter to the editor. Use our template to craft letters that call for oxygen access reform, and submit them to magazines, newspapers and other news outlets.
Contact your Congress members. Reach out to your elected officials to educate them about the vital need for supplemental oxygen reform. Email your legislators.
By sharing your experience and insight, you’ll play a critical role in raising awareness of this issue and driving change.
Our advocacy efforts
- PHA Leads Advocacy on In-Flight Portable Oxygen Concentrators
The Pulmonary Hypertension Association is leading a multi-organization effort to make sure people can fly with supplemental oxygen.
- PHA Continues Oxygen-Access Advocacy With Targeted Event
Advocates from the Pulmonary Hypertension Association, the American Lung Association, Pulmonary Fibrosis Foundation and COPD Foundation came together to seek improved supplemental oxygen access.
- Why Congress Should Support Supplemental Oxygen Reform
Pulmonary Hypertension Association advocates participated in a Capitol Hill briefing to seek improved access to supplemental oxygen.
Explore patient experiences
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‘Legislation Should be Passed Today for Accessible Oxygen’Cris Dingman was diagnosed with pulmonary arterial hypertension in December 2016, and was immediately put on oxygen.
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The Case for Portable Liquid OxygenTransitioning to liquid oxygen was challenging. My oxygen needs increased requiring me to learn a new system. This change forced me to admit that my progressive disease was progressing.
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Oxygen Users ‘Desperately Need More Options’Nancy Zeppa, 60, is a leader of the Pulmonary Hypertension Association South Jersey Support Group. Her journey with oxygen began in August 2019 when she was diagnosed with pulmonary arterial hypertension.
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When You Can’t Breathe, Nothing Else MattersThe Harpp family of Indianapolis and Barb Linser of Cincinnati shared their supplemental oxygen challenges in Pathlight. Their stories are typical of those who don’t have access to the most appropriate type of oxygen for their needs. Supplemental oxygen is vital for many people with PH.
Podcasts tackle supplemental oxygen
People with PH share their supplemental oxygen challenges in crossover podcast episodes from PHA and the American Thoracic Society.
PH Insights podcast