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When I think back to my diagnosis of Alpha-1 Antitrypsin Deficiency (Alpha-1) in 1995, I'm struck by how much has changed since then. This rare genetic condition affects each patient differently - for my sister, it caused liver cirrhosis, and for me it caused lung damage.
When my sister urged me to get tested for Alpha-1 after her diagnosis, my own doctor had to spend a week researching the condition before telling me what I'd be facing. Since then, research, education, and advocacy have advanced the understanding of Alpha-1, including how to best manage the condition and its symptoms.
My own Alpha-1 journey has included the opportunity to participate in a study at the National Institutes of Health.
However, there is one very important issue where, in my experience, more progress is needed: access to supplemental oxygen. To manage my Alpha-1 and sustain my quality of life, I require the support of supplemental medical oxygen.
I began using supplemental oxygen about 10 years after I was diagnosed. Living in rural central Pennsylvania on top of a mountain my closest local oxygen provider is about 40 miles away; I've had to wait weeks to get the equipment I need. The equipment itself also poses challenges -- the portable oxygen concentrator I need to leave my house is extremely heavy. I've torn my rotator cuff multiple times from carrying it. My at-home concentrator has 50 feet of tubing, which my husband and I are constantly trying not to get tangled in or trip on.
It's frustrating because there is a better, lighter, more portable option -- liquid oxygen -- but it's not accessible to me -- or most patients because of Medicare restrictions.
Liquid oxygen lacks sustainable, adequate reimbursement under Medicare, which has made it nearly inaccessible for Alpha-1 and other respiratory patients across Pennsylvania. I've never been offered liquid oxygen as an option, but I know it was once available. My mom had emphysema in the early 2000s and initially received liquid oxygen, but it wasn't long before it was no longer covered and replaced with standard oxygen tanks. All patients should have access to care -- including oxygen equipment -- that best fits their needs.
My situation is not unique. Many patients depend on supplemental oxygen to manage their Alpha-1 lung disease but are facing immense barriers to getting the care they need and deserve.
Fortunately, Congress has introduced legislation that could help make access to better oxygen care a reality for Medicare beneficiaries living with respiratory conditions. The bipartisan Supplemental Oxygen Access Reform (SOAR) Act (H.R. 2902 / S. 1406) would improve access to liquid oxygen by establishing a more sustainable reimbursement structure under Medicare. Liquid oxygen would make travel easier and possible by reducing the burden of carrying heavy tanks and portable equipment, allowing individuals to regain a sense of freedom and independence by having access to this high-flow, portable option.
The SOAR Act would prioritize the clinical needs of patients by improving access to respiratory therapists who can provide the education, guidance, and support needed to feel confident managing the oxygen devices and equipment at home. Particularly for patients in rural areas. It's important that policies recognize the needs of patients in every community and protect access to care.
Navigating oxygen care is frustrating to say the least, but it also allows me to participate in life's precious moments. My son said it best when I hated starting on oxygen therapy and he said, "From this day on, that oxygen is your best friend. Open your eyes to it."
I want other people living with Alpha-1 and other respiratory conditions to have that same opportunity to see oxygen not as a limitation but as something that helps them live life on their terms.
Pennsylvania's lawmakers should make passing the SOAR Act a priority and help reform a system that affects what matters most to people like me: our ability to breathe, live independently and enjoy life to the fullest.
Kathleen Haduck has lived with Alpha-1 since 1995. She is based in Blandburg.