Advocacy: You Can Be the Voice of Change

Posted on March 29, 2021   |   

This article was written by Bill Clark and Ruth Tal-Singer, PhD.

For many years, COPD has been often overlooked, under researched and underfunded. It was seen as a disease of “shame and blame; that we did this to ourselves. In recent years that that has begun to change!. You might ask: what caused the change? The answer is the patient voice, and patient advocacy is no longer silent and is now being heard and is becoming the voice of change.

Sure there are facts and figures justifying why COPD deserves more attention, but what is opening doors is the voice of the patient and their stories. Your story is so valuable because it puts a face to the impact COPD causes not only to you, but your family and friends. Who can tell our stories better than ourselves? Your story speaks to the need for better treatments, new technology, and targeted research. It tells all who hear it that what you face on a daily basis could well be them or a family member. It speaks to how urgent the problem is and why it can no longer be ignored. Your story is your own and something only you can share. Your story, when joined with others sharing their stories can and does make an overwhelming difference and change!

Advocacy: You Can Be the Voice of Change

As much as has been accomplished, there still is so much more to do. The COPD Foundation is focusing its 2021 Advocacy and Public Policy activities on three main areas:

  1. Access to safe, effective and affordable oxygen therapy
  2. Access to effective, affordable pulmonary rehabilitation (in person or via telehealth)
  3. Improvement in the regulatory process of qualifying drug development tools to support the new treatments for chronic lung conditions

These are huge issues and to begin to solve them we need changes in funding and government policies and your voices will be critical to success outcomes for the COPD community. Some of our other advocacy efforts will be in a supportive role with other leading organizations that include issues like clean air, tobacco control, vaping, vaccine access to name a few.

You might ask what one patient can do? The answer is get involved! It doesn’t require a lot of work or energy. What it does require is you, your caregiver, your family and your friends to make your voices heard.

How can you get started?

Step 1: Click on Take Action at the top of our webpage and click on Get Involved. This section of our website explains the many ways you can help make a difference by selecting the opportunities that match your interests and desired time commitment. It might be as simple as contacting your representatives. If you want to get even more involved you might consider joining our State Captains program.

Step Two: Click on Take Action at the top of our webpage and click on Join Our Advocacy: Action Center. Here you will find various initiatives we are working on. For example: after the recent elections we have a newly elected government and we would like to approach Representatives and Senators to join the Congressional COPD Caucus. Sign up for Alerts to learn of new or evolving issues that affect our community. Also in the Action Center by simply entering your address you will be given a list and contact information of all your federal and state officials.

Our newly updated Webpage gives you all the tools you need to contact your members of congress quickly and easily regarding vital issues that are important to us. You can contact your representatives by either email or phone depending on what is most comfortable for you. If contacting by email, the Action Center provides you with a template that allows you to customize your messages to address key points, tell your COPD story and explain why the issue is important to you; you can even send a Twitter post right in the Advocacy Action Center.

If you would rather speak with your representatives in person which can be the most effective, the Action Center provides you with an easy-to-follow phone script with key points and allows you the ability to insert your story to put a human face on the issue. Don't forget to let us know how it goes!

That is all it take to get involved and begin to make a difference and effect real change with just a few minutes of your time. We as a community can no longer sit back wait and hope for change to come about. Change can only happen when we educate our elected representatives to what COPD really is and the impact it is having on all of our lives. It is only through the patient voice and our personal stories that what was once a small ripple will become a mighty wave for change that will finally get COPD the recognition it deserves.


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  • Great article! As a patient advocate who's been active for nearly 15 years, I will tell you we need more people to get involved. Ruth and Bill are right: your voice counts and what you do counts. We need to be educating everyone about COPD, and not just about the meds that are advertised on TV. We need to be talking about our reality and the reality of our friends on COPD 360. We need to be talking about the good, the bad and the ugly and pushing the positive outcomes we've experienced and seen among our friends so more people with COPD can experience them.

    John Walsh used to talk about a march on Washington: it would be slowest march, for sure, but we'd get there! We can't do that right now, at least not literally, but we can certainly make our voices heard. Please help!
  • Thank you Bill and Ruth for this article!! I've been an advocate for over 10 years now, and we really do need more patients & caregivers to join us. Many of us are getting up in years, and may not be able to be as active as we have been in the past, and so we need ALL of you to become involved now. Please join us and help. Thanks!!

  • This is a wonderful article by Ruth and Bill. I never got to meet John Walsh in person, but his spirit is ever present in the organization. We need more funding for sure and we need more people to advocate for the cause. I became an advocate about 7 years ago, but have become more involved in the last 5 years. We have a big number on paper, but not all of them are active. This is fine, because each person needs to do what they feel comfortable with.

    We need more active people to make so much noise that we can no longer be ignored.

  • Thank I do have somethings that I would like to see worked on,

    • Why don't you tell us what those things are? Maybe they are things that someone's working on and you could help, and if they are new things then we may have people who can add those things to what needs to be done next.