May 13, 2024
Gary Nelson has Alpha-1 antitrypsin (AAT) deficiency which is a rare genetic disorder that is passed on in families and can affect the lungs, liver and/or skin and this condition affects his lungs, causing COPD (chronic obstructive pulmonary disease). He needs to have supplemental oxygen to perform daily activities such as going for a walk or to the doctor. However, even with his health challenges, he doesn’t let it slow him down from being as active as possible, helping first responders, and advocating for better Medicare reimbursement and respiratory therapy home care.
When his oxygen supplier switched to only giving him compressed oxygen tanks, Nelson had to adjust his lifestyle and not for the better. “It was quite a life-changing event when due to lack of Medicare reimbursement, Apria discontinued providing liquid oxygen forcing him to move from a 15-pound small backpack to a 26-pound two tank system that occupies one entire hand to move around freely. On liquid oxygen within a backpack, I used to walk for 3 miles in an hour and 15 minutes on one tank of liquid oxygen over rough terrain and be able to go up and down stairs more easily. Because of the challenges of dragging a 26-pound two tank system over various terrains, I am now happy to only achieve one and a half miles in an hour and a half using two tanks. Having to be worried about oxygen all the time discourages my efforts to walk distances to build endurance and improve my health,” said Nelson.
He used to be able to have five liquid oxygen tanks last a month, but he now requires 48 tanks to last a month. The transition to compressed oxygen was not easy. “When I reluctantly turned in my equipment to my supplier, Apria, initially I could only pick up 12 tanks. They did not have the full complement of 48 tanks when I arrived due to shortages, and poor planning. I was told by Apria that some folks have it worse than I do as they require 8 liters per minute and live 60 miles away from the closest facility. This is just not acceptable,” said Nelson.
Having a more portable system for liquid oxygen allows Nelson to be able to travel and not worry about safety issues of having to strap and carry otherwise unsecured oxygen in the car. “I used to have a 45-liter liquid oxygen tank securely strapped in the back of my truck. I could refill several carrier tanks as required within 2 to 3 minutes. The 24-inch E tanks stored in the back of a vehicle should be secured for safety. I have witnessed many people storing them insecurely in their vehicles, creating a torpedo like situation and unsafe traveling conditions.”
Even with the lifestyle adjustments he’s had to make, Nelson continues to have a positive attitude and willingness to help others. He traveled to Washington, D.C. last year to encourage legislators to support the Supplemental Oxygen Access Reform (SOAR) Act and improve supplemental oxygen reimbursement and access to respiratory therapists who can help educate patients and improve quality of life. “I met with seven legislators and told them my story. It’s so important for the people who make these reimbursement decisions to understand the day-to-day difficulties of not having enough oxygen and the stress and strain it causes lifting and moving with heavy tanks versus lightweight and long-lasting liquid oxygen packs. Most people don’t even worry about breathing but when you have a lung disease it’s part of your every day.”
