Beverly always loved playing tennis but in 2000 she noticed that she was getting extremely short of breath. She had previously been diagnosed with emphysema and chronic bronchitis, so her doctor prescribed a few different inhaler medications, but they didn’t seem to help. Her symptoms continued to get worse, but no one could come up with an accurate diagnosis or treatment. It wasn’t until five years later, when explaining her symptoms yet again that she began to get some answers.

Her doctor had initially ruled out Lymphangioleilmyomatosis, or LAM, because it is uncommon in post-menopausal women, which she was. But her friend encouraged her to go back to her healthcare provider and be tested for it. Sure enough, a CT scan, a walking test and breathing test confirmed that she did indeed have the rare, progressive lung disease. Unfortunately, there is no cure for LAM, but she was prescribed oxygen therapy to help with her symptoms.

Struggling to Make Oxygen Work

Beverly’s initial supplier delivered 50 M6 tanks, each weighing about 5-10 pounds with enough oxygen for about 20 minutes. Since she wanted to continue playing tennis, her goal was to figure out how to get enough oxygen during these times of high exertion. Her suppliers gave her a shoulder bag to carry her oxygen in. But the bag was very awkward and heavy, making her struggle to breathe and play. Beverly would spend the next several years trying to find ways to play without running out of oxygen. This would begin with her converting hydration backpacks to oxygen tank carriers.

Also, soon after she began receiving oxygen tanks regularly, her supplier decreased her oxygen delivery to 12 M9 tanks weekly, which was completely insufficient and sent Beverly into a panic. She decided to purchase a refill unit and tanks out-of-pocket so that she could supplement what she was given with her own tanks.

Additionally, she had to buy her own portable oxygen concentrator (POC) for airplane travel. These devices are only available in pulse mode, which doesn’t deliver enough oxygen for Beverly’s needs. So, every time she travels, she has to order tanks to be delivered ahead of time wherever she is going.

Beverly has to wear an oxygen tank on her back to play tennis.

Beverly is a high-volume oxygen user, not quite needing her oxygen 24/7 but close. Though she was never offered liquid oxygen, this is one type of oxygen that has been known to be helpful for people who work outside the home and don’t want to cart around multiple large tanks. Unfortunately, in recent years, liquid oxygen has become increasingly difficult for people to get. Instead, suppliers send tall E-tanks that are clunky and heavy and need a cart to be mobile. “They are an absolute pain. You have only one hand free because you have to pull the cart, so if you’re holding anything you have no hands free. Also, they are hard to move over unsmooth surfaces, they don’t turn easily, and they are difficult to transport.”

What Can We Change? 

Though Beverly has found a way to live her everyday life, she knows that things could be better and cost less out of pocket which is why she is a strong advocate for supplemental oxygen reform in Medicare. One of the biggest problems is lack of adequate reimbursement led suppliers changed out liquid oxygen tanks for compressed oxygen, which is cheaper, heavier and doesn’t last as long. This means that fewer people can get around and stay active because of the clunky E-tanks. “Our healthcare providers want us to stay active to improve our lung diseases, but it is very difficult with the current tanks,” Beverly said. 

Additionally, Beverly believes that the products available are not patient-centric and hopes that new things will be developed that will help supplemental oxygen users lead full, happy lives and not be homebound. The first step in achieving both these goals is 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. 

For too long, patients who require supplemental oxygen have not had access to oxygen appropriate for their medical and quality of life needs, especially individuals who require liquid oxygen. Join us in advocating for supplemental oxygen reform to ensure equitable access and quality care for all by learn more about the four pillars of oxygen reform and taking action.

Freedom From Smoking Clinic
Detroit, MI | May 29, 2024
Asthma Basics Workshop - National
, | Jun 18, 2024