When Sarah was pregnant with her third child, she noticed a change in her stamina and breathing. It was a problem that didn’t go away after she gave birth, and in fact declined over time. She began to consistently struggle with upper respiratory infections and her breathing became so labored she was unable to climb the stairs when visiting a high-altitude area. So, in May 2000, she spoke to her healthcare provider. They put her through a variety of tests, including her first bronchoscopy, before determining she had a rare form of sarcoidosis.
Sarcoidosis is an inflammatory disease in which the immune system overreacts, causing groups of cells to form clusters of inflamed tissue called "granulomas.” Though it most commonly affects the lungs and lymph nodes, granulomas can form anywhere in the body. Unfortunately, sarcoidosis is a progressive disease, so the main goal of treatment is to manage symptoms, decrease the risk of organ damage and improve quality of life.
For Sarah, this meant that for the next few years her healthcare team tried tirelessly to find medications that would ease her labored breathing, including Prednisone, steroids, and many different inhalers. But in 2003, it was decided that she needed to be put on supplemental oxygen. “I started on two liters and with a smaller D tank. Though the tank didn’t last long, it would fit in a bag so I could fling it over my shoulder,” Sarah explained. At the time her children were just four, six and seven years old, so Sarah struggled to carry her tank while also chasing them around. “I was on the concentrator at home which worked ok, but it took me a long time to get over the anxiety associated with going out. But as a mom there are things I just had to do, so I didn’t really have a choice,” she said.
Over time, her oxygen use increased from two liters, to four, and then six, which is when she approached her doctors about liquid oxygen. Her tanks had become so big and bulky by that point that they were drastically impeding her way of life. “I was really struggling because I was working and had young kids, so I was very busy, and it became unmanageable to have to also cart heavy tanks around. The tanks also took up valuable space in my home and were difficult to move, even with the oxygen cart,” Sarah said.
Her doctors approved liquid oxygen, which was a game changer for Sarah. “It was amazing, I could just fill up the small tank, put it in a backpack and away I went. I was able to go to the grocery store by myself and get to work without a problem. If I go out for the whole day, I bring an extra tank along just in care, but they are so much easier to use,” Sarah exclaimed.
Unfortunately, in the early 2000s, Medicare introduced competitive bidding to lower costs and promote competition among durable medical equipment (DME) companies. This change led to companies eliminating liquid oxygen, opting instead to encourage the use of compressed oxygen, which is cheaper, heavier and doesn’t last as long. For Sarah, and many others like her, this run on liquid oxygen threatens her way of life. “I still have liquid oxygen, but I have been told they are going to discontinue any time now,” she said. “Most people would probably not understand how scary it is to think of no longer being able to use liquid oxygen. But for me, it is truly terrifying. It would tremendously change my life.”
After more than 20 years on oxygen, Sarah knows how essential it is to her health to be able to get the liquid oxygen she needs. If it is discontinued completely, she would no longer be able to work, go to the store or even leave her house for the most part. The heavy tanks would limit her because she no longer has the strength to carry them around. Plus, they have shorter lifespan meaning she could get stuck without the oxygen she desperately needs. “I am on continuous oxygen flow, so it would just be truly devastating if I couldn’t get my liquid oxygen,” Sarah said. “If you are an able-bodied person who can breathe on your own, you have absolutely no idea the fear and anxiety that comes with tampering with such a delicate system. It can be completely debilitating not knowing whether you are going to get your oxygen or not. It is a fundamental need.”
The American Lung Association is among dozens of organizations working to help people like Sarah by advocating for the Supplemental Oxygen Access Reform (SOAR) Act to become law. The SOAR Act would remove oxygen from Medicare competitive bidding and provide additional protections to the estimated 1.5 million people in the US who need supplemental oxygen.
Learn more about the four proposed pillars of oxygen reform and how you can take action.
Blog last updated: September 6, 2024
