“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
—Dr. Seuss, The Lorax

Karen Deitemeyer cites that quote as being part of the inspiration behind her work as an advocate in the chronic obstructive pulmonary disease (COPD) community. Karen recalls a history of heavy smoking, beginning at the age of 15 and continuing until the age of 45. Although she quit smoking over 30 years ago, Karen understands the challenges people living with the disease face, after being diagnosed with COPD in 2001.

Karen is not unlike the 16 million other people living with COPD in the United States, as estimated by the National Heart, Lung, and Blood Institute, who experience varying levels of difficulty breathing among other symptoms, such as a chronic cough, and share an added concern as a result of the COVID‐19 pandemic. In fact, Karen contributed to a report published in the Journal of the COPD Foundation in order to prioritize a patient-driven research agenda for people living with COPD during the COVID-19 pandemic. For Karen, the biggest personal challenge living with COPD has been coming to terms with the fact that she is not able to do as much as similarly aged people who do not have COPD. Accordingly, she needs to remind herself to slow down to prevent exacerbations that would otherwise limit her activity for several days.

As an advocate for the COPD community, Karen divides her attention between local and national efforts, because she knows that there is important work to be done at both levels. Karen has spoken in public schools, statewide COPD coalition workshops, and to groups of respiratory therapy students. However, one of her proudest memories was the day she was honored with the COPD Advocacy Award in New York City, recognizing her commitment on a national scale. While living in Florida, Karen has traveled great distances to present her story on behalf of the COPD community at congressional briefings, and to participate in the National COPD Action Plan Town Hall Meeting in Washington, DC.

Karen serves on the governing board of the COPD Foundation’s Patient Powered Research Network. She is also a member of the American Lung Association’s COPD Patient Advocacy group. Through her role as state captain for the COPD Foundation, Karen was nominated to serve as a consumer peer reviewer for the Congressionally Directed Medical Research Programs Peer Reviewed Medical Research Program (PRMRP) in 2019. The PRMRP has addressed respiratory health, including COPD, as a congressionally directed Topic Area since 2014.

Karen states that her experience as a peer reviewer for the PRMRP has been educational and rewarding, and she feels that the scientific community values her perspective. “The actual panel discussion was very interesting, but scary at first, knowing that I had no scientific knowledge of respiratory diseases—only my lived experience with COPD—but the scientific reviewers valued my comments and made me feel comfortable,” Karen said.

Empowered by her platform, Karen hopes to encourage more research focused on COPD, since it continues to be a leading cause of death in the United States. While there is no cure for COPD, Karen remains hopeful by exercising regularly and using her lived experience to advocate for the changes she hopes to promote for people living with COPD.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy, or decision.