Speaking Up for the Breathless

By Andrea Brown
July 8, 2025 | VOLUME 3, ISSUE 2

COPD affects millions of individuals worldwide, yet its impact on health care systems and communities is often underestimated. The COPD Foundation is dedicated to improving the lives of those living with the disease, aiming to not only cure the condition but also reduce its burden, increase awareness, and improve access to care for those who need it most.

In an interview with Michael W. Hess, MPH, RRT, RPFT, Senior Director of Advocacy and Regulatory Affairs at the COPD Foundation, CHEST Advocates gained insights into the organization's approach to advocating for patients with COPD and navigating the complex health care system.

Michael W. Hess, MPH, RRT, RPFT
Senior Director of Advocacy and Regulatory Affairs
COPD Foundation

Empowering patients through education and resources

The COPD Foundation is committed to improving access to care by educating patients about the health care options available to them, especially during open enrollment periods. The foundation provides valuable resources such as webinars that help patients make informed decisions about their health care coverage.

“We interface with patients to help them understand what their options are,” Hess said. “We provide educational resources that guide them through the insurance process, pointing them toward programs they might not be aware of, like Medicaid Advantage’s appeals process or patient assistance programs from drug manufacturers.”

The COPD Foundation also offers COPD360social, an online community where patients, caregivers, and health care professionals can share resources, ask questions, and find support. This platform fosters peer-to-peer support and provides practical advice on managing the challenges of living with COPD.

Advocacy for policy change

Advocacy plays a critical role in ensuring that patients with COPD have access to the care they need. The COPD Foundation is deeply involved in health care policy at local, state, and national levels, working to improve access to essential treatments and funding for research.

One of the foundation's top priorities this year is the Supplemental Oxygen Access Reform (SOAR) Act, which seeks to improve access to supplemental oxygen for Medicare beneficiaries, particularly those with COPD. CHEST is also involved in the efforts to get this bill passed in Congress.

“We are engaged in a national lobbying effort called IMPACT Lung Health, where we bring together patients, clinicians, and caregivers to advocate for policies that support [patients with COPD],” Hess said. “We also work to protect funding for organizations like the [National Institutes of Health] and [Centers for Disease Control and Prevention], which are critical for advancing research and developing better therapies.”

In addition to national advocacy, the COPD Foundation supports international efforts to make health care systems more COPD-friendly. Through initiatives like World Oxygen Day, the foundation advocates for global improvements in access to treatments and therapies for patients with COPD.

Collaboration with health care providers and advocacy groups

Collaboration is key to advancing patient care and improving access to essential resources. The COPD Foundation is working with more than three dozen advocacy groups, including CHEST, to strengthen its advocacy efforts and make the SOAR Act a reality. This collaborative approach ensures that the voices of patients with COPD are heard at the highest levels.

“The support we receive from our advocacy partners is critical,” Hess said. “It takes all of us, working together, to drive forward policies that will make a real difference for patients.”

Challenges in COPD care and the future

Looking ahead, the COPD Foundation is focused on addressing several key challenges in COPD care, including securing funding for research and addressing the high costs of biologic therapies for patients with COPD. As new treatments like biologics show promise for patients with eosinophilic inflammation, the foundation is working to ensure these therapies are accessible and affordable.

“We’re also exploring how to integrate technology into COPD care,” Hess said. “How do we create digital health programs that are beneficial for patients and caregivers while not overwhelming clinicians? This is an exciting area, but it still requires a lot of work and research to find the best practices.”

Hess also emphasized the need for early intervention in lung health, noting that COPD is often seen as a condition affecting older adults or individuals who smoke. However, increasing research is showing that lung health can be impacted early in life, and better care from childhood could prevent or slow the progression of COPD.

“We need to teach people to care for their lungs from birth, just like we teach them to care for their heart or blood pressure,” Hess said. “Lung health should be part of every routine checkup.”