Building momentum for supplemental oxygen reform

The PHA's Jaeger Spratt explains how legislative reform could benefit patients

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by Mike Naple |

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Do you use supplemental oxygen or know someone who does?

We all need oxygen to breathe and to function. But most people breathe without giving it much thought. Yet some in the chronic illness and disability communities need a little extra help to ensure that oxygen flows throughout their bodies.

A doctor prescribed me oxygen before I’d even heard of pulmonary hypertension (PH), a rare and progressive disease that affects the heart and lungs. The oxygen therapy was intended to address episodes of shortness of breath I had while walking to work eight years ago. After my PH diagnosis, oxygen therapy would become a regular part of my treatment plan.

Supplemental oxygen doesn’t fit into white-capped, orange pill bottles like other prescriptions, but it is just as essential as my oral medications. I have a plug-in oxygen concentrator in my home for overnight use, as well as a portable oxygen concentrator for wherever life takes me. Like other medications, supplemental oxygen supplies need to be reordered and refilled, and issues related to access and affordability are just as important to maintain a healthy quality of life.

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Although I can be stubborn about my portable oxygen use when out in public, access to oxygen makes a world of difference. If I’m experiencing PH symptoms like low energy or shortness of breath, oxygen therapy provides the boost I need to continue my day — whether I’m working, cleaning my apartment, or eating at a restaurant with friends.

Unfortunately, not all patients can access the oxygen they need — even when it’s prescribed by a doctor. This access barrier is particularly acute for patients who need liquid oxygen.

Advocates pursue supplemental oxygen reform

Advocates across two-dozen patient communities and chronic illness organizations are urging members of Congress to take action on providing better access to supplemental oxygen. These groups have reached a consensus on the “Four Pillars of Oxygen Reform,” which are meant to serve as a basis for new federal legislation.

To learn more about this legislative effort, I reached out to Jaeger Spratt, the advocacy and treatment access program manager at the Pulmonary Hypertension Association. Excerpts of our conversation follow.

MN: Can you describe the composition of the advocate coalition that is calling on members of Congress to take action on oxygen reform?

JS: The coalition includes the American Lung Association, the Pulmonary Fibrosis Foundation, the American Association for Respiratory Care, and the American Thoracic Society, as well as many patient advocate organizations like the Pulmonary Hypertension Association. The coalition takes great care to center patient voices and includes several wonderful patient advocates who provide invaluable expertise. We have a good representation of clinical and research expertise from multiple medical institutions as well. And while the main coalition meetings have not yet included durable medical equipment suppliers, those stakeholders were included in the process of crafting the legislative text of the bill that the coalition is working on getting introduced in Congress this year.

How would oxygen reform legislation improve the quality of life for PH patients who use different forms of oxygen therapy? For example, I use a standing oxygen concentrator at night that plugs into the wall as well as a portable oxygen concentrator when needed outside of my home.

This proposed legislation is a fairly wide-ranging bill covering four different areas. It seeks to address many quality-of-life challenges and will help patients using many different kinds of oxygen therapy. It will ensure supplemental oxygen is patient-centric, increase access to liquid oxygen when it is medically necessary, improve reimbursement to make respiratory therapists more readily available to patients, and create a national standardization of claims documents for oxygen equipment suppliers.

One of the reform pillars focuses on changing the terminology from “home oxygen” to “supplemental oxygen” for people who use oxygen therapy. Can you explain why making that distinction is important?

The terminology change from “home oxygen” to “supplemental oxygen” shifts the emphasis away from a particular location where oxygen is used. Patients who need oxygen therapy shouldn’t and often don’t need to be restricted to their home, so the current terminology paints an incomplete and limiting picture. Oxygen therapy has the potential to be a resource that is actually freeing for patients and allows them to be more active in their community, provided they can access the equipment and therapy type most appropriate for their condition. I think this terminology change helps support that goal for patients.

How to get involved

As momentum builds to promote this legislative reform, members of Congress need to hear from the broader PH community. Please consider using the Pulmonary Hypertension Association’s advocacy tool to urge your representative to support supplemental oxygen reform.

​​Follow Mike Naple on Twitter: @mnaple.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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