Liquid oxygen is critical to my ability to live an active, meaningful life with my family. In October 2023, I learned that my oxygen company no longer would supply equipment for liquid oxygen.

For about a week, I had visions of my life shrinking down to just sitting on the couch, chained to an oxygen concentrator and waiting to die. Then I fought to be grandfathered in and keep my access to liquid oxygen.

Less than a year later, I was invited to tell my story of living with oxygen and pulmonary hypertension on Capitol Hill. I joined the American Lung Association’s Respiratory Action Day to speak in support of the Supplemental Oxygen Access Reform Act. The SOAR Act aims to improve access to liquid oxygen and respiratory therapists for Medicare beneficiaries, as well as increase reimbursements to oxygen companies for liquid oxygen.

The Pulmonary Hypertension Association has been working with partner organizations and advocates for years to advance this legislation. The SOAR Act would protect patients’ access to liquid oxygen. For high-flow patients like me, it’s the only modality that allows us to be outside our homes living as normal a life as possible. We hope it ultimately can become law.

Making a difference

This advocacy event was my chance to do something for myself and my fellow oxygen users. I had done some virtual advocacy with PHA, but this was my first chance to go in person. I jumped at the chance to go to D.C.

This trip underscored the need for the SOAR Act. At home in Denver, I use liquid oxygen in a backpack so I can do things with my hands free and unencumbered. The liquid oxygen gives me the 10 to 15 liters I need. I can go to the grocery store, walk my dog, exercise, go to the mountains, camp, hike or fish with barely a second thought and minimal shortness of breath.

When I was in D.C., I had to use a wheelchair to get from meeting to meeting in the massive Capitol complex. I have never needed a wheelchair at home but it was necessary on my trip. I had to use a portable concentrator, which only goes to 6 liters with intermittent flow.
Oxygen users deserve full and active lives supported by oxygen that meets our needs. We shouldn’t have to tailor our lives to the absolute minimum oxygen suppliers are willing to provide us.

Preparations

After I agreed to participate, the reality of logistics weighed on my mind. With a few phone calls, I had lined up my portable concentrator with extra batteries so I could safely fly and spend the whole day on Capitol Hill. I got a stationary concentrator for my hotel room and travel oxygen documentation from my PH doctor.
I arrived in Washington on Sunday afternoon and woke up bright and early Monday for the training day, I met the other patient advocates from all over the United States. We were all there to tell our stories — not as expert litigators or advocates, but as experts of our lived experiences.

On the Hill

We can put a face to these issues for our congressional representatives. Each of us stepped out of our comfort zones to try to make a better world for people with pulmonary disease. It was awesome to have the floor with the people making decisions about where to put research and development dollars. My group included an asthma patient and medical student from Indiana and a member of the American Lung Association staff.

Our first meeting was with a legislative staffer from the office of Sen. Michael Bennet (D-Colorado). I left feeling hopeful, but also a little disappointed. I was hoping my story would be so meaningful that there would be no doubt and no need to actually talk to the senator before promising his support. Clearly, I am new to this.
By luck, we ran into Bennet in the hallway as we were leaving his office. He put down the bags he was carrying to talk to us. I introduced myself as one of his constituents and busted out my 15-second elevator pitch. It was exciting to talk with my senator directly.

Our next stop was lunch and then finally a meeting with Rep. Diane DeGette (D-Colorado), my representative. We met her health care legislative assistant in the hallway because her office was buzzing with so much activity. It was surreal to stand in the marble hallway as people were flying by, sharing our stories and pleading our case for why these bills deserve the representative’s support.

Committed to a cause

This past May, I returned to Capitol Hill with my daughter Sophie by my side for PHA’s World PH Day event. Together, we spoke directly with lawmakers about what it’s like to live with PH, and why oxygen access and research funding are critical for people like me.
These visits deepened my love for this country and its institutions. I always understood that our government is supposed to work for us, but it never felt real that I, an average citizen, could walk into an office to petition my representatives for a cause so personally important to me. It was awesome. I am deeply grateful to be healthy enough to make the trip to D.C.

You can support oxygen-access reform by emailing your member of Congress. Congressional offices really do keep track of email from constituents and what issues are important to them. Big thanks to PHA for igniting this flame for advocacy and giving me the tools and guidance to speak up. And thank you to PHA supporters who helped me get there.

I will continue to bang the drum for the SOAR Act until it becomes law.

You can make sure the next person impacted by PH has the same opportunity. Support PHA with a gift today.