World Oxygen Day: ‘More than a single day of action’

Key takeaways:

• October 2 (“O-2”) marks World Oxygen Day.
• Patients who use oxygen therapy currently struggle with accessing proper equipment.
• Clinicians can practice advocacy and share several resources to support the cause.

Tomorrow, Oct. 2, several lung and respiratory organizations will come together to celebrate World Oxygen Day and patients using oxygen therapy.

According to the COPD Foundation, goals for World Oxygen Day 2024 include educating people on oxygen therapy, advocating for improved oxygen equipment access and addressing the stigmas people have about oxygen use.

Advocacy partners of this year’s World Oxygen Day include CHEST, the Association of Pulmonary Advanced Practice Providers, the Pulmonary Fibrosis Foundation, the Allergy & Asthma Network, and several more.

To learn more about World Oxygen Day, current obstacles patients in need of oxygen care face and what clinicians can do to support the cause, Healio spoke with Mike Hess, MPH, RRT, RPFT, respiratory therapist and senior director of advocacy and regulatory affairs at the COPD Foundation.

Healio: How prevalent is oxygen therapy use? What types of patients need oxygen therapy?

Hess: It’s a little hard to say. We usually use the number 1.5 million oxygen therapy users in the United States. However, that number is getting pretty old and only covers Medicare beneficiaries. Not only does that leave out a lot of younger people who use private insurance, but Medicare claims data also leave out many people who are in the part of their 5-year rental contract where equipment suppliers virtually receive no reimbursement for certain kinds of equipment. No reimbursement means no claims, which can make people essentially disappear. Statistical analyses suggest the number is more in the 3-million-user range. Globally, the number is really hard to determine because there is no global clearinghouse or registry for these people, not to mention variations in prescribing practices. 

There are many, many different kinds of people who can benefit from supplemental oxygen. The largest group is probably those who have COPD. However, there are several different pulmonary and cardiac disease states where people can see benefit, which means there’s not really any single “face” of oxygen. There are people of virtually every age, every ethnicity and every gender. The common denominator is whatever particular condition they have, it reduces the body’s ability to deliver oxygen from the lungs to the tissues.

Healio: What are the biggest obstacles to patients receiving the oxygen care they need?

Hess: Access to appropriate equipment is a huge barrier. Over the last 40 years or so, progressive cuts in reimbursement for oxygen equipment have devastated the durable medical equipment industry. That has led to certain delivery modalities, such as cryogenic liquid oxygen, to become almost extinct in the U.S. It’s not because it’s outmoded technology or that no one wants it, but simply because it costs too much to service. In some parts of the world, supply chains for oxygen equipment and bulk oxygen itself can’t support demand even in acute-care settings. There are even places, believe it or not, that don’t have access to basic-but-critical tools such as pulse oximeters to monitor therapy effectiveness. That limited reimbursement has also stifled innovation in the space, as it can be almost impossible for companies to see return on research and development investment in any kind of reasonable timeframe.

Additionally, education/training about oxygen therapy and equipment is really lacking. Before the pandemic, the American Thoracic Society surveyed 1,926 oxygen therapy users about their experiences in a study published in Annals of the American Thoracic Society. They found that the vast majority of people were taught how to use their new equipment by delivery personnel. That’s an unfair expectation on those delivery people and leads to confusion, frustration and nonadherence for their clients.

Clinician education isn’t much better; the majority of oxygen therapy prescriptions are written by primary care providers, clinicians who are already under tremendous time and effort pressure but are now expected to be experts in complicated technology. We haven’t invested enough in tools to assist them with clinical decision-making, which can lead to inappropriate prescriptions.

Healio: What did you learn through last year’s World Oxygen Day event?

Hess: We were very fortunate to have an incredibly positive international response to the campaign. We were able to start building a great network of advocacy partners, which we are proud to have added to this year.

We also learned the importance of using the campaign to tell “oxygen stories.” We believe that many of the issues people face with their therapy are, at their core, caused by a simple lack of understanding. There’s this pervasive belief that people on oxygen therapy are invariably frail or near the end of their life. The founder of the patient therapy organization Running On Air, Mary Kitlowski, BA, is a good friend of mine. She and her sister have primary ciliary dyskinesia, which often leads to bronchiectasis. They’re both on oxygen therapy, and both started while they were in the workforce. When Mary’s sister received her first set of portable oxygen tanks, she realized there weren’t enough tanks to get her through her shifts as a nurse practitioner. When she pointed this out to the delivery technician, she was told, “Well, people on oxygen don’t work.” Obviously, that’s far from the case, but that’s the stereotype we need to break.

Healio: What are the goals of World Oxygen Day 2024?

Hess: Our goals are threefold. Most importantly, we want to share information about oxygen therapy, both clinical and personal. Knowledge is powerful and is the only way to make these systems better.

Secondly, we want to advocate for better access to appropriate equipment. In the U.S., a big part of that is bipartisan legislation pending in both the House and the Senate. Known as the Supplemental Oxygen Access Reform (SOAR) Act, the legislation aims to make the provision of oxygen therapy more patient-centric and business-friendly by reversing some of the crippling reimbursement cuts from the past few decades and introducing new reimbursement structures to provide proper education in the home from a trained respiratory therapist. Globally, that means partnering with international advocacy organizations to promote investment in oxygen infrastructure and develop resources and tools to support clinicians provide therapy that aligns with their patients’ needs, goals and values.

Finally, we are looking to reduce the stigmas and stereotypes surrounding oxygen therapy. That means telling more stories in more voices from more parts of the world. We want everyone on oxygen therapy to understand that they are not alone, that they aren’t broken and that there are fantastic support systems out there for them. We also want the general public and policymakers to each have a clearer understanding of these issues and that these people matter.

Healio: What can clinicians do on this day to support the cause?

Hess: In the U.S., clinicians can visit our Advocacy Action Center to send an email to their Senators and their U.S. Representative asking them to cosponsor SOAR. The more cosponsors we get, the more likely the bill will be taken up on the floor or added to must-pass legislation at the end of the session.

They can also share resources such as our Oxygen Therapy Basics guide and the You And Oxygen Therapy website we created with the American Thoracic Society. These resources fill in the blanks of oxygen therapy and give some of the education that many people otherwise don’t get. They’re also great resources to help clinicians themselves learn more about oxygen equipment.

Healio: Why should clinicians continue to advocate for oxygen therapy after Oct. 2? What forms can this take?

Hess: Fixing the oxygen therapy infrastructure won’t happen overnight. We want people to look at every year’s World Oxygen Day as the next marker on the road to modernizing our systems. It’s more than a single day of action; it’s a chance to reflect on whatever progress has been made over the previous 12 months and to chart a course for the next 12. 

What it looks like for clinicians will depend on where they practice. It could be as simple as continuing to share oxygen-related reports and posts from the COPD Foundation or other advocacy organizations or signing up for our oxygen email newsletter. It could be supporting legislative efforts such as SOAR or could be working with national or regional bodies on community needs assessments for oxygen delivery. It could also be helping us better understand where knowledge and access gaps exist where they practice.

No effort is too small, and we’re always looking for people to help us spread the word!

References:

• Jacobs SS, et al. Ann Am Thorac Soc. 2018;doi:10.1513/AnnalsATS.201703-209OC.
• World Oxygen Day. https://www.copdfoundation.org/Take-Action/Get-Involved/World-Oxygen-Day.aspx. Updated Sept. 20, 2024. Accessed Sept. 20, 2024.

For more information:

Mike Hess, MPH, RRT, RPFT, can be reached at mhess@copdfoundation.org.