COPD ADVOCACY: Ways to be involved with the COPD Foundation

Posted on September 29, 2022   |   

This article was written by Stephanie Williams, BS, RRT.

So often, people visit our website and find that the COPD Foundation is involved in more than just providing education or promoting research. We also have a program dedicated to connecting with elected officials and others who can help make a positive difference in the lives of those with COPD, called IMPACT. Recently, Linda Walsh, Chief Community Engagement Officer, took some time to answer a few questions about the advocacy work we do.

What is your favorite part about working with advocacy?

Many people initially shy away from the idea of advocacy. They think it's difficult, time-consuming, or feel their story might not be impactful. I've learned from many years of advocating that every minute spent supporting important causes matters. And every voice counts.

Our elected officials want to hear from us - the voters - and it's their job to represent our interests. Meeting (in-person or virtually) with Congress has given me the platform to keep COPD top of mind with those directly responsible for supporting change. It's empowering when speaking to representatives or their staff, as they ask questions and engage in our passion and urgency to advocate for people with COPD and other chronic lung diseases.

You can sense that many of them really care and often share their own stories or insight about how they are connected to COPD. This fosters relationship-building to affect real change.

Can you tell us more about the advocacy work at the COPD Foundation?

The Foundation advocates for specific public policy priorities relevant to the COPD community at large. Our level of involvement shifts depending on our prioritization and availability.

We will take the lead on issues requiring our expertise to advance. For example, the Oxygen360 and PIVOT programs and our focus on increased investment in lung health research are areas in which we lead.

On other priorities, we engage as an advocacy participant to ensure policy solutions represent the needs of the COPD community. For example, with issues related to patient-focused drug development (PFDD), the 21st Century Cures Act and Cures 2.0, as well as oxygen and pulmonary rehab access via the American Thoracic Society (ATS) working groups.

Also, we may monitor issues to remain aware of public policy for further evaluation when new information emerges as we've done with competitive bidding for oxygen and reimbursement for pulmonary rehab (PR), for example.

And we may support a platform through messaging or awareness, like tobacco industry ownership of pharmaceutical companies, or synthetic nicotine regulation, the PASTEUR Act, and telehealth flexibilities.

We determine which policy issues to work on and the Foundation's level of involvement in partnership with our Advocacy & Public Policy Committee, by listening to our COPD360 Community Engagement Committee, and assessing where our leadership can be most helpful in developing and driving solutions or where we can plug into efforts led by other advocacy partners.

Does the COPD Foundation need people to join advocacy efforts?

Yes, absolutely! With 16 million individuals currently diagnosed with COPD in the U.S. and an estimated 16 million more undiagnosed, we need to build an army of advocates to "march on Washington" and represent every person affected by COPD.

Many people may not be aware that COPD is woefully underfunded in the National Institutes of Health (NIH) disease allocation. We rank 176th in federal funding, but COPD is one of the top 5 causes of death each year in the U.S. We can change that.

Together, we can advocate for more critical funding for COPD, bronchiectasis and nontuberculous mycobacterial (NTM) lung disease. And we can advocate for early diagnosis through awareness, education, and increased research.

Does advocacy take a lot of time/energy/travel?

The energy or time spent on advocacy is returned tenfold. The more individuals and organizations that join the effort, the more successful we will be at effecting positive change for people impacted by chronic lung disease today and in the future.

It's important to note that you don't have to travel to Washington, D.C., to be an advocate. You can directly IMPACT COPD by acting right from your home. We post "Action Alerts" on our website with detailed instructions on how to call and/or email your members of Congress to make sure they know that COPD is a health crisis in our country and that there is something they can do to help.

You may also consider helping us spread the word about COPD, bronchiectasis and NTM lung disease by sharing our social media posts and engaging across your social media platforms, including: Facebook, Instagram, Twitter, and LinkedIn.

How can someone get involved and learn about being an advocate?

We encourage those interested in advocacy to review the "Take Action" section of our website, where they'll find information on awareness activities, volunteer opportunities, and more details on making an impact with your elected officials.

We welcome you to get involved and lend your voice to the efforts of our advocacy team. There are many opportunities to make an IMPACT. Join us today and get started on your advocacy journey!

COPD ADVOCACY: Ways to be involved with the COPD Foundation

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