The COPD Town Hall and the First-Ever National COPD Action Plan

Like 10 Likes

The National Heart, Lung, and Blood Institute (NHLBI) hosted the first-ever COPD Town Hall meeting at the National Institutes of Health on February 29-March 1, 2016. The meeting was a critical first step in the development of a National COPD Action Plan to tackle the COPD epidemic in the United States.

The COPD Foundation worked with NHLBI to bring together patients, caregivers, government representatives, medical professionals, and others to address the disparities in government funding of prevention, treatment, and research around COPD. On day one, attendees were assigned to working groups that developed objectives and tactics around one of six goals. The multi-disciplinary teams presented the results of their brainstorming sessions to the broader group on day two. The discussions were broadcast in real-time to online viewers who contributed to the conversation from their homes.

National COPD Action Plan The following common themes arose day two of the COPD Town Hall presentations:

  • Real progress is going to take an army of individuals and groups working together;
  • Attitude change and increased engagement among the public, providers, patients, caregivers and policy makers is requirement of change;
  • Growing referrals and access to pulmonary rehabilitation is a short term win that can make a big difference;
  • Innovative ways of collecting and using data will drive progress;
  • Increased funding for research must include a greater focus on prevention, public health and translational research as well as growing what we know about how COPD progresses in each individual;
  • Growing the COPD360 patient registry is central to advancing research towards improved therapies, and ultimately, a cure for COPD.

First we must ensure that the National COPD Action Plan represents the scope of the issues that affect those impacted by COPD. If you couldn’t make it to the COPD Town Hall you can still be a part of this process. Here’s how:

The COPD Town Hall was a landmark event for the COPD community but our work is far from done. Stay connected with us on COPD360social and let us know how you will contribute to the National COPD Action Plan today.


You need to login to comment.
  • The photo is of 9 of us patients who were privileged to meet with Dr. Charles Gibbons (Director of the NHLBI), at the end of Day 2 of the Town Hall Meeting. We were joined by Dr. James Kiley, Director of the Division of Lung Diseases and Dr. Tony Punturieri, the NHLBI's COPD Program Director. Dr. Gibbons was very gracious to us, explained that the NIH cannot lobby Congress for more funding for research, but that we can, and must, do all that we can to be heard - other communities have been successful and we can be too, but it's going to take ALL of us.

    We don't have to go to DC to let our elected officials know that we exist - they have local offices and are in their home districts when Congress isn't in session. We can visit them in their local offices, call them, email them, write them a letter.

    I want to thank the COPD Foundation for inviting me to be a part of the Town Hall Meeting and encourage each of us to become involved.

    • Thanks for being involved and bringing this to us!
      I ran into a wife of a COPD patient, here in Texas. He is setting up another COPD Awareness Event on Mother's day, this year, in Spicewood TX. Bobby Boyd, Song Writer and Singer. It will be a great day of music, eats and talking about COPD Awareness. I will be going for sure and hope to get my other COPD friends to at ten too!

    • I am so very sorry - I neglected to mention that Jamie Lamson Sullivan of the COPD Foundation arranged our meeting with Dr. Gibbons and accompanied us there. Thanks for everything you did to make it a memorable occasion, Jamie :-)
    • Aww thanks Karen! As always it was so nice to see you and the others and we are so thankful that you could help make sure the patient voice was represented! We are doing a series of blog posts about the individual goals so I hope you can help spread the word to those who couldnt make it that they can still join in the conversation!
  • Sorry, the link for Day 1 didn't work when I clicked it. This link works. Thanks for all the hard work everyone did. I wish I had been able to join you there in person, but you know we are all working with you from all our locations -- then and now. :-)

    Don't know why the link didn't post. It's above for the 1st day, February 29, 2016.