Karin Pittsley, an Alpha-1 advocate for the Alpha-1 Foundation, wrote an article published in Reporter Today highlighting the importance of the SOAR Act for the Alpha-1 community.
After having COVID-19 in 2021, I began experiencing consistent shortness of breath. Everyday activities like gardening started to leave me winded. Numerous trips to the emergency room and doctors’ visits concluded everything from anxiety to longterm-COVID. Until finally, a simple breathing test offered a life-altering diagnosis.
I was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1), a rare genetic condition that affects the lungs and liver. At first, I felt scared, isolated, and unsure how I would manage.
Since then, I have come to understand my condition and the value of specialized care. I now receive weekly intravenous plasma-derived infusions and have had to adjust my life in many ways. I retired from my teaching position last June, and while my dream has always been to travel, the infusions mean I can’t leave Massachusetts for more than a week at a time.
My involvement with the Alpha-1 Foundation (A1F) has been a lifeline, offering a sense of community, much-needed education, and advocacy support. Attending A1F educational events and co-leading a support group allow me to connect with others. Sharing personal stories and experiences with fellow Alphas has helped me tremendously in navigating and understanding the challenges of my condition.
No two patient journeys are the same in managing Alpha-1. While my care depends on weekly IV infusions, I know others depend on medical oxygen therapy (supplemental oxygen) to survive and maintain their quality of life.
Many members of my support group are homebound due to heavy oxygen tanks that are difficult to carry and require reliable access to electricity to function. My friend and fellow Alpha-1 advocate shared that she was terrified when the power went out in her home: a near-death experience when you require supplemental oxygen to breathe. Another Alpha can only walk 25 feet from his oxygen tank, even in his own home due to the length of the tubing.
Being on supplemental oxygen can mean not being able to do things that many people take for granted, like walking in the grocery store or attending your grandchild’s soccer game.
Hearing Alphas’ stories has opened my eyes to the struggles of those with respiratory conditions relying on oxygen every day. Some Medicare policies have made access to oxygen therapy extremely difficult. Many patients can’t get the medical equipment they need, including portable liquid oxygen, to help them manage their disease and get around easily. Liquid oxygen is a high-flow, lightweight oxygen modality that can dramatically improve a patient’s ability to leave home for extended periods and maintain a higher quality of life, but it is not widely accessible due to inadequate Medicare rates.
The Supplemental Oxygen Access Reform (SOAR) Act (S. 1406/H.R. 2902) could change that for so many Americans. This bipartisan legislation would enact patient-centered reforms so those with respiratory conditions like Alpha-1 can access the necessary equipment to travel, socialize, and maintain independence outside their home or hospital. The SOAR Act would also improve access to clinical support from respiratory therapists who help patients and caregivers better understand their oxygen care. This would greatly improve well-being and health outcomes for Alphas, respiratory patients, and families across Massachusetts and the rest of the country.
Since being diagnosed with Alpha-1, I have advocated for myself and those whose voices aren’t being heard. Last September, I was able to go to Capitol Hill and speak with my Massachusetts lawmakers in Congress about the SOAR Act with my fellow Alpha-1 Foundation advocates. I urge everyone to listen when we insist the SOAR Act is crucial for patients who rely on supplemental oxygen.
I urge all Massachusetts lawmakers to co-sponsor the SOAR Act so patients can maintain both their independence and their ability to breathe.
To read the original story on Reporter Today, click here.
