By Denise Williams, News & Views
Pulmonary rehabilitation professionals are experts in COPD management, coaching patients through exercises designed to help them breathe better and maintain a certain standard of living. But what of the 15 million or so Americans who are suffering every day with this chronic lung condition, and don’t even realize it? What are the implications for them?
They are many, says Aimee Kizziar, MHAL, BA, RRT-NPS, RCP—and, unfortunately, none of them good.
Danger for the Undiagnosed
COPD-SOS: On a Mission to Help Undiagnosed Sufferers
The Dorney-Koppel Foundation has launched new outreach to draw attention to the "missing millions," or roughly 12-15 million U.S. residents who don't realized they have COPD.
The aptly named COPD-SOS campaign, carreid out in cooperation with the COPD Foundation and the American Respiratory Care Foundation, is rolling out a series of PSAs across major media networks this summer. Through those messages, and with some extra push from organizations like AACVPR, the organizers aim to drive traffic to the COPD-SOS website. There, visitors can compelte a brief self-assesssment to mesaure their risk and see if they could be one of the "missing millions."
Besides identifying, protecting, and vaccinating members of this population who are particularly vulnerable to COVID-19 hospitalization and death, the campaign hopes to mobilize the community for more federal dollars to benefit COPD research. According to data fro mthe Centers for Disease Control and Prevention and the National Institutes of Health, mere pennies are spent on every person with COPD—a paucity, despite the fact that it's the #3 top cause of death from chronic diseases.
COPD-SOS is also circulating a petition to showcase public support for the cause. The goal is to present Congress with 156,979 signatures—one for each person who died in 2019 to COPD or other chronic lower repirator disease. Sign the petition here.
Walking around with COPD and not knowing it essentially means that nothing is being done to reverse or slow disease progression. In the meantime, lung function gradually declines with each exacerbation, which often ends with a visit to the emergency room or admission to the hospital. Quality of life typically deteriorates, while societal and personal economic burdens increase. “Individuals may experience loss of workdays due to exacerbations or loss of gainful employment related to functional limitations,” warns Kizziar, a pulmonary disease educator who is affiliated with University of California Davis Health.
If unsuspecting sufferers should happen to need other procedures, she adds, undiagnosed COPD elevates their risk for complications during those events. That’s particularly true in the context of COVID-19 vaccination. Having an accurate diagnosis is all the more critical for patients with COPD, which is associated with unfavorable outcomes of respiratory failure and death.
Considering the dire consequences, how is it that so many COPD cases are slipping through the cracks? Of the approximately 30 million Americans with the condition, government statistics estimate that half are unaware of their diagnosis. Where’s the disconnect?
Low public awareness of the disease is one factor, according to Kizziar. There’s a huge misperception, for instance, that COPD stems only from tobacco use; but the reality is you don’t have to be a smoker to develop it. In fact, she says, citing federal data, fully a quarter of COPD patients have never puffed on a cigarette. “It’s not only smoking,” she emphasizes. “There are occupational, environmental and genetic factors.”
Regardless of which risk factor is at fault, Kizziar continues, patients too often don’t understand that the shortness of breath, coughing/wheezing, unusual tiredness, and tightness of the chest they feel isn’t normal. They chalk the symptoms up to aging and inactivity, not bothering to discuss them with a medical professional. Many would never know to request spirometry; and by the same token, some doctors aren’t comfortable ordering the test and/or interpreting the results. Additionally, some physicians may lack reliable screening tools, may not ask the right questions and/or may not recognize early-stage warning signs. By the time symptoms become too aggressive to ignore, up to 50% of lung capacity may already be lost.
Just Breathe—PR to the Rescue
“Having to fight for every breath is very scary and lonely,” Kizziar says knowingly as the supervisor for UC Davis Health’s pulmonary rehab program. But hers and other practices are at the ready. “PR is designed to help individuals better understand their breathing, learn how to live better with their condition and improve strength, stamina and endurance,” she explains. “PR will likely reduce shortness of breath, improve feelings of low energy and increase ability to exercise and stay active.”
In addition to getting a referral to PR and checking out resources such as the COPD Foundation (https://www.copdfoundation.org), Kizziar encourages patients with a COPD diagnosis to consider joining a support group. “There are several great resources for patients to help them better understand COPD, join others and hopefully give them the confidence to stand up for themselves and for change on the national level.”
And change is needed to train more attention on the problem of undiagnosed COPD, she says—particularly among women, ethnic minorities, rural communities and populations with lower socio-economic status. Kizziar points to government statistics showing that while COPD is the third-biggest contributor to morbidity and mortality in this country, it is only 176th for federal dollars. “Let’s advocate for increased COPD public awareness, screening, PR reimbursement and COPD funding,” Kizziar urges.
She applauds the work already being done, including by Chris Garvey and the American Thoracic Society PR reimbursement workgroup, by Mollie Corbett and Dean Diersing on behalf of AACVPR, and by Grace Anne Dorney Koppel for her leadership on the COPDSOS campaign.
Read more about Koppel’s project in the sidebar.