When Oxygen Keeps You Alive – but Keeps You From Living
I don’t like being told “no.”
When it comes to living with Lymphangioleiomyomatosis (LAM), I research, adapt, and advocate not only for myself, but for the thousands of women living with LAM. That advocacy has included supporting the SOAR Act, legislation designed to improve access to supplemental oxygen for people with chronic lung disease. Until recently I believed I was fighting for others, then I became the patient who was told “no.”
Since my diagnosis twenty-five years ago, I have consistently required supplemental oxygen at high altitude. When my son’s wedding was planned in the mountains, I asked my pulmonologist for a prescription that would allow me to spend a full week celebrating with family and participating in all the events surrounding this joyous occasion. My pulmonologist was excited to recommend lightweight, portable, long lasting liquid oxygen.
A script was written, and calls began to find a supplier. I live in a large metropolitan area of more than 2 million people and yet supplier after supplier gave me the same answer: “We don’t carry liquid oxygen.” I called companies near my destination. The answer never changed.
I now have placed an order to travel with12 compressed oxygen tanks. I will worry about tanks running empty and will need to ration my time and activities. Carrying the tanks themselves will be physically taxing with frequent equipment changes. Because of these limitations, I’ve shortened my trip from a week to just a few days and eliminated extra sightseeing and hiking. Time with my family has been reduced not because of LAM, but because of the lack of appropriate equipment to sustain me.
In the end, I wasn’t told “no” by my doctor, my insurance company, or by the durable medical equipment company. I was told “no” by a system. In the early 2000s, changes to Medicare reimbursement placed supplemental oxygen under the competitive bidding process for durable medical equipment. Because liquid oxygen is more expensive to provide and requires specialized delivery and regular refills, reimbursement often fails to cover suppliers’ costs. Many simply stopped offering it. The result is that a therapy my physician believes is medically appropriate is effectively unavailable.
As I reflected on this, I couldn’t help but wonder: Is this my future and that of my LAM sisters? What about the 1.5 million oxygen users across the United States? Surely, we deserve more than survival. We deserve the ability to work, to celebrate milestones, explore new places, and make memories with the people we love. Oxygen should not merely keep us alive; it should help us live.
That is why the fight to pass the SOAR Act matters. And it is why I hope others will join me in continuing to advocate until “no” is no longer the answer.
Support the people, programs, and progress that will lead us to a cure.