Debbi Webb-Howells, an A1F Support Group Leader, wrote an article published in the Richmond Times-Dispatch highlighting the importance of supplemental oxygen for the Alpha-1 community.
I live with Alpha-1 antitrypsin deficiency (Alpha-1) — a rare, progressive condition that affects the lungs and liver. While very few people have heard of Alpha-1, it has an enormous impact on individuals and families across Virginia.
Following years of exposure to toxins like asbestos through my family’s work, my lungs were extremely compromised. When I was diagnosed with Alpha-1, which causes severe lung damage, it was like the perfect storm for my condition. It wasn’t until 2014 — seven years after my Alpha-1 diagnosis — that I realized how much supplemental oxygen would change my life.
I was at a meeting in Roanoke when I became so severely short of breath that I couldn’t even walk 10 feet without being winded. This was a turning point in managing my Alpha-1. Working with my pulmonologist, I was prescribed steroids and supplemental oxygen to support my lung function.
Oxygen therapy allows me to remain active, travel and maintain a high quality of life, but accessing the right oxygen device and learning about the state of oxygen care in our country has been a difficult journey.
When I first started using supplemental oxygen, I carried three to four heavy oxygen tanks to work every day to get through the day and had a large at-home concentrator I nicknamed ‘Big Bertha.’ I’d heard of an alternative — liquid oxygen — which is lighter, more portable and longer-lasting. But this type of therapy was, and still is, practically unavailable. I was told it couldn’t be prescribed because it was too costly, so I had to stick with heavy oxygen tanks to leave my house.
Supplemental oxygen has been a miracle in helping manage my Alpha-1. Still, it’s also become an elephant in every room — not only for me, but for others experiencing difficulties, delays and other barriers accessing the oxygen supplies and services.
I eventually purchased my own small portable oxygen concentrator because Medicare would only provide the tanks in addition to my home concentrator, making travel inaccessible since the tanks are not FAA-approved. Traveling is complicated for me, having to carry heavy suitcases with batteries and
equipment, readjusting my flow level on the plane, and planning around how much oxygen I need to get where I need to go.
But I’m one of the lucky ones who can even leave their home. For many respiratory patients who require a higher oxygen flow, portable oxygen concentrators can’t deliver the level they need. I’ve heard countless stories from individuals who cannot access the device they need to leave their homes safely, and who are unable to travel long distances to see family or participate in life’s more special moments.
These limitations that restrict access to supplemental oxygen — especially for those without the financial resources to purchase their own equipment — are forcing patients to choose between having the oxygen they need and having the freedom to live active, fuller lives.
Access to liquid oxygen would change everything for Medicare beneficiaries like me. That’s why I support the bipartisan Supplemental Oxygen Access Reform (SOAR) Act (H.R. 2902/S.1406), which would help more patients access the oxygen care that best meets their medical needs. The SOAR Act would create a separate payment for liquid oxygen under Medicare and establish many new patient protections.
Everyone with Alpha-1 is different, and we’re still learning so much about the condition, including how differently it can affect people within the same family. I was the first person in my family to be diagnosed. And while my younger sister has the same SZ genotype as me, she is completely asymptomatic.
Others with the SZ or ZZ genotype are awaiting a lung transplant. You don’t know how this condition is going to affect each person. My sister may never need oxygen, or her needs could change over time as her lung function changes. I’m fortunate that I’m not at the point where I need a higher concentration of oxygen, and I hope I never get there. But for those who do, the right oxygen options must be available and covered by Medicare.
Congress has an opportunity with the SOAR Act to change the lives of those who are struggling to access the type and level of oxygen that best meets their clinical needs. On behalf of the Alpha-1 community, I strongly encourage Virginia legislators to cosponsor the SOAR Act and support comprehensive Medicare oxygen reform.
To read the original story on Richmond Times-Dispatch, click here.
