Dan Coffin shared with Bowling Green Daily News in Kentucky the importance of the SOAR (Supplemental Oxygen Access Reform) Act for Alphas around the United States (HR 2902/S 1406). Help support the SOAR Act and help fix Supplemental Oxygen Access by sending an action alert to your Congressional and Senate leaders: https://mstr.app/aa36fb24-0a8a-4f1f-80a2-34afe2439057
As a lifelong runner and veteran of the U.S. military, I’ve always thrived on being active and enjoying the interests I prioritize, including traveling and spending time with my wife, children and grandchildren. So, when I first had trouble breathing while mowing the yard and completing my daily tasks, I knew something wasn’t right.
After seeing my primary care doctor and several specialty physicians, I was ultimately diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1), a rare condition I had never heard of. My wife, a retired registered nurse, was also completely unfamiliar with the condition, we immediately sought out as much information as we could and joined a patient support network within the Alpha-1 Foundation.
Since then, we’ve learned a lot and became part of a compassionate, dedicated community of Alpha-1 supporters.
Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic, progressive rare condition that can cause damage to the lungs and liver. An estimated 100,000 people in the United States are living with Alpha-1, which currently has no cure, but can be treated with plasma infusions and medical oxygen to help manage symptoms.
I first realized I needed supplemental oxygen support when traveling to Florida to participate in an Alpha-1 clinical trial. I started to have trouble breathing on my flight, a terrifying feeling – especially when you are at 30,000 feet – and a humbling one after serving as a paratrooper and jumping out of planes with no problem for many years.
High-altitude simulation testing showed that my blood oxygen levels declined significantly while flying on an airplane or visiting a high elevation, so I was prescribed supplemental oxygen. While I was relieved to receive oxygen support, the systems in place for patients were not ideal. My insurer would only cover heavy, portable unit that required six batteries and lasted only a limited time, making any form of traveling with the equipment cumbersome and stressful.
Realizing these devices could not realistically support my family’s active lifestyle, we paid the out-of-pocket expenses for a more reliable, lighter-weight portable oxygen system. I am grateful we had the resources to do that – but most patients do not.
While I only depend on supplemental oxygen while traveling, many individuals living with Alpha-1 require supplemental oxygen support every day to maintain lung function and stay well. However, despite this need, Alpha-1 patients still struggle to access critical supplemental oxygen devices and support for their hereditary, chronic respiratory condition.
This is why I am an advocate for the Supplemental Oxygen Access Reform (SOAR) Act (H.R. 2902 / S. 1406), a bipartisan federal legislation that would reform Medicare’s outdated supplemental oxygen policies. The bill would ensure patients with chronic lung diseases, including Alpha-1 Antitrypsin Deficiency, have easier access to the oxygen and equipment they need to live active, independent lives – as well as better education about how to use them.
For me and so many individuals living with Alpha-1, we just want to keep up with our loved ones and remain active, despite our chronic symptoms and health challenges. My experience has taught me that it is possible to maintain my quality of life – with access to the appropriate healthcare tools, including supplemental oxygen, and a robust support system.
I urge all Kentucky lawmakers to support the SOAR Act so that Medicare patients across Kentucky, living with Alpha-1 and other chronic conditions that hinder their ability to breathe, can access necessary life-sustaining supplemental oxygen support.
Dan Coffin of Glasgow is an advocate for the Alpha-1 Foundation, helping other patients navigate the daily challenges of living with Alpha-1.
