Chronic Obstructive Pulmonary Disease (COPD) is the third leading cause of death and fourth leading cause of disability in America, according to the National Institutes of Health. The umbrella term encompasses a number of progressive lung diseases including emphysema, chronic bronchitis and refractory asthma.
While the National Heart, Lung, and Blood Institute (NHLBI) identifies 16 million Americans as being diagnosed with COPD, that figure only tells part of the story. The American Lung Association and COPD Foundation both estimate closer to 25-30 million Americans are impacted by COPD ... but millions are unaware they have the disease.
The Diagnosis Issue
Jamie Sullivan, MPH
Jamie Sullivan, MPH, vice president of Public Policy and Advocacy for the COPD Foundation, said one reason people go undiagnosed is because symptoms often aren't noticeable in the earliest stages. Even when individuals begin to experience increased breathlessness and coughing, it's easy to pass it off as a cold, allergies or simply part of the aging process and to change behaviors, like avoiding stairs, to mask the problem.
Another issue, she added, is that physicians aren't necessarily asking the right questions during routine visits when the disease might be caught in the early stages. Sullivan noted most diagnoses occur when symptoms have become so severe patients can no longer ignore them. The CAPTURE Study, she added, found most people aren't diagnosed with COPD until they have already lost half their lung function.
Primarily seen as a smoker's disease, Sullivan said there is also a "shame and blame" element surrounding COPD. However, she noted, there is an increasing understanding that other factors including environment, prematurity, and genetics also add to the burden of the disease.
"Our founder John Walsh, who unfortunately passed away earlier this year, saw there was this huge hole in support for COPD patients," said Sullivan. "He really put out a call to action to the patient and scientific community to come together and find solutions to support the community."
Mounting a National Response
It has only been since 2013 that COPD rates across all 50 states have been available with the data put forth from the Centers for Disease Control and Prevention's Behavioral Risk Factor Surveillance Survey (BRFSS). Further complicating the issue, there haven't been national screening parameters, a coordinated action plan, or funding for COPD research at the level of other diseases. However, the hope is all of that might be about to change with the release of the COPD National Action Plan earlier this year.
"Prior to the release of the federal action plan in May, there hadn't been a coordinated federal response," said Sullivan. Now, she continued, "Here's a blueprint of how we, as a country, can tackle COPD."
Sullivan said the COPD community had advocated for this type of coordinated response for years. She noted many stakeholders, including the COPD Foundation, had a voice in creating the collaborative plan. Following interagency work groups at the federal level in 2014 and 2015 and a letter from Congress urging next steps in late 2015, Sullivan said NHLBI hosted a town hall meeting in February 2016 open to physicians, patients, researchers and COPD organizations. "That was a great chance for the community to come together to talk about what are the major issues the plan should address and to prioritize goals," Sullivan noted.
Following the town hall meeting and period for public comment, the finalized COPD National Action Plan outlines five key goals:
- Empower people with COPD, their families, and caregivers to recognize and reduce the burden of COPD.
- Improve the diagnosis, prevention, treatment and management of COPD by improving the quality of care delivered across the healthcare continuum.
- Collect, analyze, report and disseminate COPD-related public health data that drive change and track progress.
- Increase and sustain research to better understand the prevention, pathogenesis, diagnosis, treatment and management of COPD.
- Translate national policy, educational, and program recommendations into research and public health actions.
The next steps, Sullivan said, are to move forward with implementation of the plan.
What's Happening Now
In the meantime, Sullivan said there are a number of immediate steps to improve care including an emphasis on ensuring everyone is diagnosed properly and on time, enhancing patient education efforts, instituting a personalized treatment regimen to meet a patient's specific needs, and where appropriate, utilizing pulmonary rehab. "These are all things we don't need new treatments to do," she said of deploying an evidence-based approach.
Sullivan added the COPD Foundation and others have long advocated for broader use of primary pulmonary rehab, a non-pharmacologic management option. "Think of it as physical therapy for your lungs with the added benefit of education and support," she said.
Reimbursable at low levels that Sullivan said aren't sustainable, pulmonary rehab therapy is typically offered only though hospital-based programs. Without enough programs, Sullivan said it's been hard to gain traction among patients and physicians. Another issue is the time commitment, which entails two hours of education and exercise plus travel time. "To get adherence and compliance with someone, that takes a major commitment," she noted. "But for the people who do, nearly everyone you talk to will say it changes their life."
While the therapy is evidence-based, Sullivan said more research is needed to grow awareness and improve reimbursement rates. However, she noted, research funding has been another ongoing issue.
"It goes back to the federal response to COPD, which is around $100 million per year gets spent on federal research ... which is pennies compared to the impact of the disease," she said. Sullivan added that while a great deal of progress has been made in understanding COPD and its genetic basis, additional research funding could really accelerate that work.
"This coordinated action plan could be the tipping point," she said. "It has the potential to be if the community rallies around it," she concluded.