Faces of COPD: Jamie Sullivan believes that, 'Together we will succeed in making COPD a national priority.'
Posted on November 30, 2017 |
Jamie Sullivan, the COPD Foundation’s Vice President of Public Policy and Outcomes, shares with us how she became involved with the organization, the two accomplishments she’s especially proud of, and how you can help make COPD the national health priority it deserves to be.
When Jamie began pursuing her Master’s in Public Health degree, the COPD Foundation (COPDF) had only been in existence for about four years. There was a field experience requirement as part of his program and Jamie was “lucky to have been able to move to Washington, D.C., to complete my field experience at a time when COPDF received its first advocacy grants.”
In January 2010, Jamie joined the Foundation full-time. Her role was to “grow Operation 435, the grassroots advocacy program, and work with states to develop COPD action plans.”
Thinking she didn’t really have a personal connection to this disease, “working for John Walsh and working with the COPD community made it seem personal.”
As it turned out, Jamie learned she did indeed have a personal connection. “I found out during prenatal testing that I was an Alpha-1 carrier and therefore have a slightly increased risk of developing lung disease down the road.” During and after college, incidentally, Jamie worked for the Alpha-1 Foundation.
Before joining COPDF, Jamie says she was “like most of the public and had not really heard of COPD or for that matter Alpha-1. As I got more involved, more and more friends and family chimed in with the now common ‘my Grandma had COPD’ or ‘my Dad had Alpha-1’.”
Although it seems each year “more and more people are talking about COPD, we have a long way to go to make it just as normal to talk about COPD as it is to talk about cancer, heart disease, and other health priorities.”
Now Jamie leads the COPD Foundation’s public policy & advocacy efforts. She also “pitches in on grant writing, helps to engage patients in research activities and continues to work with the US COPD Coalition, a key partner organization.” In this capacity Jamie works with federal and state elected officials as well as key agencies to advocate for actions that would help meet the needs of the COPD community.
Looking back over the nearly eight years she has been with COPDF, Jamie says there have been “many memorable moments, none topped by the relationships I have developed. Those who are involved now are some of the most compassionate, dedicated and selfless people that I’ve ever had the privilege to work with, including patients, caregivers, respiratory therapists, world-class physicians and researchers and our own COPDF staff family.”
For Jamie, there are two key accomplishments that truly exemplify the valuable work that the Foundation does, how the Foundation aims to realize John’s mission and of which he is most proud.
“The first occurred just 20 days after I moved to D.C. COPDF held its first COPD Biomarkers Qualification Workshop. After two days of open dialogue among our industry partners, the US Food & Drug Administration, the National Heart, Lung & Blood Institute (NHLBI) and academic researchers, it was clear to me that COPDF can do very special things, especially by bringing the voice of the patient into conversations where that voice has been absent in the past.”
This workshop “led to the creation of the COPD Biomarkers Qualification Consortium that remains a model for how industry can collaborate with each other and with academic research, agencies and patients to advance COPD drug discovery,” says Jamie.
More recently, the release of the COPD National Action Plan by the NHLBI marked a major milestone in the fight to create a robust and coordinated national response to COPD.
“From the beginnings of COPDF’s advocacy efforts, a COPD National Action Plan was one of the top goals. While some may see just a document, the COPD National Action Plan represents the first signs of recognition that COPD is a national health priority and can serve as a platform to facilitate collaboration in local communities, within states and with the federal government. COPDF staff and advocates should be proud of this moment and equally committed to moving the COPD National Action Plan forward to implementation. I know I am!” says Jamie.
Jamie hopes that “the COPD community knows that the Foundation can only be as successful as those who lend us their voices and tell their stories. Our policy goals, programs and research are shaped by what patients experience every day and for us to be successful we need to hear from the COPD community.”
Indeed, Jamie says “we don’t want to determine what matters most on our own; we must do it in partnership with those who live and care for individuals with COPD every day. That doesn’t mean everyone has to travel to D.C. or go out and hold events. Just do what you can to whatever degree you are able. Find a way to use your voice for the betterment of the COPD community and for yourself.”
“Our hope is that you get just as much back personally from your engagement with COPDF that we get from your involvement. Together we will succeed in making COPD a national priority, making it a topic that people not only talk about, but also do something about.”
“I am proud to work with this great community to make that happen and to further the mission started by John in those early days,” says Jamie