My daughter shouldn’t have to fight for oxygen | Opinion
Oxygen keeps my daughter Lily alive. Policy holds her back.
As a pediatric intensive care unit nurse, I’ve spent my career caring for children with complex medical needs. I thought I understood what it means to navigate the health care system − until my young daughter Lily was diagnosed with pulmonary hypertension: a serious condition that causes high blood pressure in the arteries of the lungs.
After 36 days in the ICU and being listed for a lung transplant, Lily returned home on supplemental oxygen. For Lily, this round-the-clock treatment has kept her alive and allowed her to thrive. For our family, it has given us hope.
In the beginning, I had to navigate new territory. Despite being a nurse, I had to learn the ins and outs of home-based oxygen care that my nursing career had not prepared me for. I soon realized that oxygen therapy is more than just using a piece of medical equipment; it is a complex medical treatment that requires education, support, and trained respiratory therapists, which too few families can access today.
We’ve learned everything about supplemental oxygen on the fly. I had to teach myself how to refill tanks, manage backup supplies, troubleshoot issues, and coordinate care so my daughter could enjoy childhood like any other 10-year-old. We had to learn how to safely store oxygen tanks and what to do when equipment breaks or supplies run low. Our family’s electricity bill has jumped to nearly $450 a month because oxygen equipment runs continuously, and concentrators take hours to refill portable tanks.
I’ve had to fight hard to get the right type and level of oxygen equipment so Lily can safely go to school and participate in the activities she loves. She cheers, rides horses, and swims while connected to 26 feet of oxygen tubing. She has never let oxygen define her.
But accessing the equipment that lets her do those things has been an uphill battle, and our family is not alone. For years, Lily had to carry a heavy concentrator up and down the stairs in our home because insurance would not cover a second unit. I had to jump through hoop after hoop to get an additional concentrator so she could move around her classroom, as well as educate her teachers, friends, and the school nurse on how to use it safely.
Congress can help families breathe easier
It wasn’t until we were connected with a respiratory therapist who fought for an additional concentrator for Lily that we learned about liquid oxygen: a lighter, more portable option for patients with complex medical needs. This would make an incredible difference, providing greater mobility and independence rather than having to carry a heavy tank in her backpack. But access to liquid oxygen has become increasingly limited for patients across the country because federal policies have created reimbursement challenges, making it harder to obtain the oxygen therapy that supports patients’ medical needs and improves their quality of life.
Liquid oxygen would make a major difference in Lily’s life − just as it would help thousands of other Americans with serious respiratory diseases live well and take part in many of the adventures life has to offer.
Congress has an opportunity to help by passing policies that ensure patients and families can access the oxygen equipment and support services that best meet their needs. Lily and I have met with lawmakers and advocated for the Supplemental Oxygen Access Reform (SOAR) Act (H.R. 2902/S.1406): bipartisan legislation that would modernize oxygen policy by creating a separate reimbursement structure for liquid oxygen, establishing payment for respiratory therapists, and improving documentation processes.
The SOAR Act is more than federal health reform; it’s about enabling my child to be more independent at school without worrying if she has the right amount of oxygen or has the ability to play with her friends.
As a nurse and a mom, I know access should never be the hardest part of one’s care. When Lily and I recently traveled to Washington, D.C., to advocate for better access to oxygen, I had to spend hours calling around to get tanks for Lily, and it was hard to coordinate with our existing provider due to insurance restrictions. Communication gaps and inconsistent policies have created significant barriers for families simply trying to ensure their loved one can access oxygen away from home.
It shouldn’t require extraordinary interventions for patients to access the equipment they need to breathe. Having greater access to respiratory therapy and a better understanding of oxygen modalities would be life-changing, which is why I strongly urge Ohio’s congressional delegation to support the SOAR Act.
Lindsay Cipriani of Groesbeck is a Pediatric Intensive Care Registered Nurse and is an advocate with the Pulmonary Hypertension Association.