For more than a decade, NHLBI’s Learn More Breathe BetterSM program has worked with leading lung health organizations around the country to educate, engage, and empower the more than 16 million Americans living with chronic obstructive pulmonary disease (COPD), as well as their families, caregivers, and health care providers.
As the nation marks National COPD Awareness Month and, on Nov.18, World COPD Day, these organizations are ramping up their community-based efforts even more, broadening awareness about COPD and promoting its early diagnosis, treatment, and management. Their simple goal: to help people living with the disease maximize their quality of life.
But meeting this goal can be tricky. That’s because COPD can start off mildly and worsen over time. People may not recognize that chronic coughing, chest tightness, wheezing, or shortness of breath can be symptoms of the disease. Many often dismiss these telltale signs as the downsides of aging or even allergies. Yet diagnosing and treating COPD in its early stages are essential steps in helping to manage the disease and slow its progression.
To address these and other critical issues around COPD—and actively work to reduce its burden—many organizations are making notable efforts, and patients, their families and caregivers, and health care professionals are all playing a role.
Through the Learn More Breathe Better’s Community Subcontract Program, NHLBI recently awarded funding to three of these groups: Breathe California of the Bay Area, Golden Gate, and Central Coast; the COPD Foundation; and the Respiratory Health Association. The funds will support innovative health education activities that help address some of the unmet health needs of the communities the organizations serve. The awards are part of NHLBI’s effort to give a boost to organizations focused on lung health—including those in its Breathe Better Network–-that also are developing sustainable activities that further the goals and objectives of the COPD National Action Plan, the nation’s first-ever blueprint for a multifaceted, unified fight against the disease.
Here’s a snapshot of the work each of these organizations is doing:
Breathe California of the Bay Area, Golden Gate, and Central Coast serves an economically poor population with high rates of asthma and smoking. But California as a whole wrestles with ever-deepening health disparities that especially affect vulnerable populations, such as those in Vietnamese and Hispanic communities. Breathe California works to educate these communities through culturally-tailored efforts specifically aimed at people living with COPD. Their outreach programs, which also engage families and caregivers, provide resources (including Learn More Breathe Better COPD materials) that are translated from English into other languages to reach diverse communities.
To enhance these efforts, Breathe California uses NHLBI funding to conduct workshops, distribute materials, and work with established community partners, such as senior centers and ethnic-focused community-based organizations. The workshops, officials say, are especially helpful for seniors who are living with and are at risk for COPD. “Events make a big impact for this at-risk population, and they help them understand breathing issues may not be just from aging,” said Vanessa Talania, program manager for the group. Breathe California also conducts spirometry testing to screen people for COPD.
The COPD Foundation has worked since 2004 to bring attention to the disease while empowering the COPD community. It provides resources to people with COPD so they can manage their condition and take steps to improve their quality of life. With their new funding, they will step up their focus on rural communities. Research shows that, compared to urban populations, rural populations have a higher rate of COPD (8.2%), higher COPD-related death rates, and less access to health care. The Foundation’s CIRCLES (Clinicians Improving the Rural COPD Landscape through Education in Self-care Goals) project addresses this disparity. CIRCLES is improving the ability of rural health care professionals to help patients self-manage their COPD, using the free COPD Pocket Consultant Guide mobile application (PCG app). The PCG app features patient/caregiver and health care professional trackers. Within the patient/caregiver track, users can watch inhaler, nebulizer and exercise videos, track activities, and document symptoms. The app also help patients follow their personal COPD management plans and stay in touch with their health providers.
The Foundation will test the app with patients in New Mexico and Colorado along with a newly developed CIRCLES toolkit, which will include outreach materials for clinicians to use with patients. “The goal of the app is to assist health care professionals in introducing and identifying the resources to help the patient manage their treatment and condition,” said Barbara Yawn, M.D, chief clinical officer of the COPD Foundation. It also offers helpful videos that patients can watch at home between their primary care visits, noted Kristen Willard, the Foundation’s vice president of public and professional education. For example, she said, “patients can watch proper inhaler techniques,” making it more likely they will get the most from their medications.
Respiratory Health Association is helping meet the needs of COPD patients nationwide with Project STRENGTH (Support for Transitioning Rehabilitation and Exercise Now Going To Home). Pulmonary rehabilitation has long been a key part of many COPD patients’ treatment and management plan. Through exercise, education, and support, it helps patients maintain an active life. But when COVID-19 cases began surging, rehabilitation sites—located mostly within hospitals—closed, and COPD patients were left wondering what to do next. Where would they go if they had just started pulmonary rehabilitation? How would they continue their rehab if they had graduated from a program?
With the help of NHLBI funding, STRENGTH has been helping answer those questions—and also filling the void in its role as an accessible, hands-on resource for people who participated in pulmonary rehabilitation and want to continue outside the formal program. “While the program won’t replicate the pulmonary rehab experience,” said Joel Africk, president and CEO of the Respiratory Health Association, “it can remind patients of the techniques, like pursed lip breathing, to practice at home. So when patients can return to facilities, they fit right back in and become models for others.”
The long-term success for all the work these organizations are doing, health experts said, depends on people everywhere working together. “COPD has no cure yet. Through the funding of a robust research portfolio, we are helping the scientific and medical communities to better understand the pathogenesis, prevention, and treatment of COPD,” said Jim Kiley, Ph.D., director of NHLBI’s Division of Lung Diseases.
“Everyone must play a role in bringing greater attention to its debilitating effects and the management of the disease,” Kiley added. “An essential next step to reducing the burden of this disease is also to support the efforts of organizations that have a direct impact on the day-to-day lives of patients and those caring for them.” NHLBI, he noted, has been leading these efforts, with its support of initiatives such as the Community Subcontract Program. They help enhance both the quality of life for patients and the ability of health care providers to treat them, he said.
For more information and resources on COPD, visit www.nhlbi.nih.gov/BreatheBetter.