Advocacy is Essential in Facing a Chronic Lung Disease - CAIRE Inc.
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Contributed by Natalie Haglund, consultant to CAIRE Inc.~ 

When a person is diagnosed with a chronic lung disease or any other chronic condition, tests, appointments, treatment options, therapies, etc. are discussed and scheduled.

What often is not talked about is navigating the healthcare system, insurance companies, employment, and other aspects of life. Nurses and doctors do help with some of that; however, often the patient becomes the expert about living with their chronic disease and must learn how to advocate for themselves. This can be a daunting task and patients often don’t know where to start. I recently found myself having to advocate for myself more than ever to receive the care I need.

I work in healthcare and have a good handle on how insurance processes work and have resources very accessible to me. This past year has presented challenges and I have learned even more about these processes. It brought on a new type of stress to deal with on top of managing the stress of worsening symptoms, diagnostic tests, and managing life in general.  All the while I was going through that, I kept thinking of patients who don’t have knowledge of how healthcare and insurance systems work, who don’t know where to start finding information, or may not even able to do that for themselves.

So, what is a person to do if they need help? Myself, I start asking questions. By phone, in person, and email. Who do I ask? Nurses. If the nurse doesn’t know the answer, chances are they can find a resource to connect with. If it’s a question or concern related to health insurance, most health insurance companies have nurse case managers and other resources available to patients. Again, if I’m not sure whom I should speak with, I just start asking questions. I’ve found that people want to help, it’s just a matter of letting them know that help is needed.  Asking for help is a big part of self-advocacy.

Advocacy is not only important on an individual level, but also collectively. Patients living with lung disease that use supplemental oxygen often face challenges getting the oxygen delivery system that best suits their needs and lifestyle. If a patient doesn’t have the oxygen delivery system that is tailored to them, it can hinder their ability to work, go out and about, and do daily activities.

My supplemental oxygen needs are currently met by the CAIRE FreeStyle Comfort portable oxygen concentrator. I know it would be much more challenging for me to work, do daily errands, and participate in activities I enjoy if I didn’t have it. It’s been a big game changer for me this past year. Supplemental oxygen can also be delivered in gas form from a portable tank which sometimes can be large and cumbersome, or liquid oxygen. Medicare and other health insurance coverage varies for all of these delivery systems. Costs that patients may have to pay out of pocket can limit their options for a delivery system.

The world of the oxygen therapy user is complex. For our population, in particular, strides in getting the special support we need most often comes from the highest levels of government thanks to the efforts of advocacy organizations that work tirelessly to give a face to our daily reality.

You might have heard recently about the legislation in Congress called the Supplemental Oxygen Access Reform (SOAR) Act.

The purpose of this act is to improve Medicare coverage and access to supplemental oxygen and respiratory therapists for patients who qualify. If this Act passes, it could be a game changer to many lung disease patients across the country.

I have included some helpful links below so you can learn more about this proposed legislation, and I encourage you to contact your members of Congress to share your story, and take on a greater role in advocacy. Our voices are important and need to be heard.


Tell Congress to Pass Supplemental Oxygen Reform (

SOAR Act (

Medicare’s Coverage of Portable Oxygen Concentrators Explained –

Pulmonary Fibrosis Navigator | American Lung Association

Natalie Haglund, 51, diagnosed with Idiopathic NSIP (a type of interstitial lung disease), lives in northern Minnesota where she works as a Licensed Practical Nurse (LPN) in the operating room. She enjoys photography, hiking, concerts, crafty projects, and time with her 23-year-old daughter, friends and family.

If you have been prescribed oxygen therapy, learn more about CAIRE by visiting or by calling 1-800-482-2473 to talk to an oxygen advisor.

The contents of this blog post are not intended to substitute for professional medical advice. Please consult your physician for personalized medical advice. When using any oxygen therapy device please consult the applicable product instructions for use for product indications, contraindications, warnings, precautions, and detailed safety information.