It is the fourth leading cause of death in the United States, affecting nearly 16 million people, but for many Americans, chronic obstructive pulmonary disease, or COPD, still remains a mystery. That’s why in 2017, at the request of Congress, the NHLBI led a year-long, multi-team effort to figure out what it would take to relieve the burden of this debilitating lung disease.
The result was the COPD National Action Plan, a comprehensive roadmap designed to change the very trajectory of a disease that not only can make it difficult for a person to breathe, but also to perform the most basic tasks of daily life. The plan promotes a coordinated national approach to tackling the problem, and it sets goals aimed at raising awareness about the disease, empowering patients and their caregivers, advancing research, and improving current prevention and treatments with an eye toward a cure.
Now, two years later, some of the key players involved in both developing and implementing that plan are taking stock and asking the simple question: How’s it going?
The short answer: not so badly. Promising signs of progress are showing up everywhere—from new education toolkits for patients, providers, and caregivers to high-tech mobile apps for patients—but lots more work has yet to be done.
That was the word at an NHLBI-hosted town-hall style meeting, held November 13 on the NIH’s main campus in Bethesda, Maryland. About 50 people—federal and state partners, researchers, patients, their caregivers, advocates, and industry representatives—gathered in a room at the Natcher Conference Center to share how they have begun addressing the plan’s goals and objectives and, importantly, how they might collectively track their progress. Another 200 people tuned in to the conference via the NIH Videocast.
These kinds of periodic check-ins are critical, said James Kiley, Ph.D., director of the NHLBI Division of Lung Diseases . “It’s one thing to put the plan together, but we don’t want it to just sit on the shelf, in a library, or, worse yet, a doorstop in somebody’s office,” Kiley said. “What we really want to do is to see how we can peel elements of this plan out and make it work.”
Kiley expressed optimism that success is within reach, but he acknowledged the challenges are formidable, requiring the coordinated resources of the broader public health community. Consider: In addition to the 16 million diagnosed with the disease nationwide, millions of others have it and do not know it, in part because of persistent barriers to earlier diagnosis and treatment. And while the disease is most prevalent among smokers, studies now show that it is on the rise in nonsmokers—indeed, a quarter of cases occur in people who never smoked, possibly because of environmental pollutants and second-hand smoke.
Unfortunately, early symptoms of COPD—such as shortness of breath — lead many people to think of them as just normal signs of aging, so those who have the disease lose significant lung function before ever seeing a provider. It’s one reason COPD-related health care costs are projected to increase to nearly $50 billion by 2020.
At the meeting, participants shared various resources and ideas, some still being refined, that are helping to address some of the issues around diagnosis and prevention.
Paul Moore, D.Ph., senior health policy advisor in the Federal Office of Rural Health Policy (FORHP) housed in the Health Resources and Services Administration (HRSA), said his office is trying to address the unique challenges of COPD in rural areas, for example. According to estimates from the Centers for Disease Control and Prevention, adults in rural areas have significantly higher rates of the disease than their urban counterparts, and rural areas see more COPD-related Medicare hospitalizations and deaths. “COPD is bad no matter where you live, but the outcomes are worse for those in rural areas,” Moore said.
To help, Moore said HRSA funded development of the Rural Chronic Obstructive Pulmonary Disease Toolkit, that positions in one place, promising, evidence-based models to guide rural-based organizations looking to implement COPD programs. The office also helped in the development of A Rural Hospital Guide to Improving Chronic Obstructive Pulmonary Disease, which Moore described as a “step-by-step cookbook” that shows how to use best practices to manage the care of rural residents with COPD.
Other new resources for improving care and treatment capitalize on the booming trend in mobile health technology. Jamie Sullivan, vice president of public affairs at the COPD Foundation, noted that her organization has developed a downloadable app—called the COPD Pocket Consultant Guide—that helps both patients and healthcare providers. The app features several videos, including one that demonstrates helpful exercises and another that shows how to use the various inhalers currently available to patients. It also provides preliminary screening tests for depression and anxiety (a frequent comorbidity in COPD), a pulmonary referral checklist, and links to COPD Foundation resources.
To help the patients’ caregiver—unpaid family members or friends who help care for those with COPD— the Respiratory Health Association (RHA) Midwest developed The COPD Caregiver’s Toolkit. Joel Africk, RHA’s president and CEO, noted that 70% of COPD patients lean on informal caregivers who need support themselves.
“Despite the value of these caregivers, we’ve learned that the caregivers are struggling,” Africk said. “They’re unprepared for the range of challenges of caring for someone with COPD.” He noted that many of these unpaid caregivers show more signs of anxiety and depression than the patients for whom they are caring. “We consider that a call for help.”
His organization’s toolkit offers advice on how caregivers can take better care of themselves and their loved ones, with tools to keep them organized: pages that can be used to write down information such as medications and doctor appointments, along with folders for relevant medical documents. Caregivers who have tested the toolkit have offered positive feedback, Africk said.
For its part, NHLBI continues to build and refine its own COPD resources through the Learn More Breathe BetterSM program, a national health education program that provides educational resources on lung health and research to a variety of audiences, including people with COPD and health professionals who treat them.
Meanwhile, NHLBI-funded researchers are using genetic and genomics tools, developmental science, imaging technologies, as well as animal models and clinical data to better understand COPD, and target improved treatments and, possibly, a cure. They are even looking toward the use of precision medicine in the treatment of COPD.
While these kinds of efforts all contribute to helping fulfill the goals of the COPD National Action Plan, participants at the meeting agreed that the plan won’t have “legs” until progress gets measured and shared among all the COPD stakeholders. To that end, Kiley said, the community will develop a practical tracking system for use by the COPD community in tracking and monitoring progress toward implementing the goals of the National Action Plan. NHLBI hopes to launch the tracking system in the Spring of 2020.
“The successful implementation of the COPD National Action Plan depends on the entire COPD community,” Kiley said. “Stakeholders can use the plan to drive change, collaborate, and support programs and activities that help relieve the burden of disease.”
EDITOR’S NOTE: November 20 is World COPD Day