An Interview with Carol Rubin, New Jersey State Captain and IMPACT 2020 Advocate

This article was written by Bret Denning, JD and Carol Rubin, MEd, MS.

The COPD Foundation recently had a virtual chat with Carol Rubin, New Jersey State Captain and IMPACT 2020 participant/advocate. Read on to learn more about Carol and her advocacy work.

How long ago were you diagnosed with COPD?

I was diagnosed with emphysema in 2014. Like so many others, I had COPD several years before I was diagnosed. I attributed my shortness of breath to being out of shape, needing more exercise and did not connect it to a lung disease until I finally saw a pulmonologist.

How long have you been a State Captain?

I became a State Captain for New Jersey a year ago. Prior to that, for two years I participated in the Foundation’s Advocacy Ambassador program, which provided participants with training, mentoring and important skills in grassroots advocacy.

What motivates you to advocate for the COPD community?

Raising public awareness of all aspects of COPD is my cause. Although COPD is the fourth leading cause of death, so many people are not familiar with it; they do not know what it is like living with COPD. Funding is critical to seeking a cure. I want to use my voice and my personal story to advocate and make an IMPACT!

What types of advocacy work have you done?

One of the first things I did as an advocate was to tell my story in a blog for the Foundation’s COPD Digest. I also attended conferences to become more knowledgeable and develop the tools necessary for being an advocate. As a COPD Advocacy Ambassador, I learned how to reach out to elected officials in different ways; it was both exciting and satisfying when I conducted a presentation to staffers of my state’s Senator, Cory Booker (D-New Jersey).

In the area of research, I have served and continue to serve as a patient-advisor in several studies and surveys, most recently one that is focusing on COPD during the global COVID-19 pandemic. I have also served on a peer review panel as well as co-authored articles on such topics as spirometry, controlling COPD symptoms, proper inhaler techniques and medication adherence, also for the Digest. Last year, I attended the training for IMPACT 2019 and am now preparing for IMPACT 2020. I look forward to continuing to build my advocacy skills!

You touched on this earlier: why is government funding so important to the COPD community?

Approximately 30 million Americans are living with COPD, yet inequities in government funding still exist. COPD kills more than 150,000 people each year, but other diseases with fewer deaths receive significantly more funds for research and other programs. For example, the National Institutes of Health (NIH) spends approximately $100 million per year on COPD research, yet this is significantly lower than what they spend on other leading causes of death. With respect to the Centers for Disease Control and Prevention (CDC), there is no funding specifically dedicated to COPD.

In your view, describe the role of an advocate and what public policy initiatives would benefit the COPD community the most.

In addition to raising awareness, our role as advocates is to encourage legislators to support programs that improve the lives of people living with COPD, including:

• Pulmonary rehabilitation – greater access for the COPD patient, medical coverage/affordability, access in rural areas, more facilities, education, medical staffing
• Medications – insurance coverage for medications including oxygen, access, research
• Research – conducting and analyzing studies, finding a cure
• Education – providing information about all areas of COPD to raise public awareness
• Healthcare services – physicians, therapists, technicians, testing, early diagnosis, prevention, treatment and management programs
• Impact on the level of national and public healthcare programs

What has Congress done to date to help the COPD community?

Conditions for people with COPD have improved through the efforts of the COPD Congressional Caucus. This bipartisan group of U.S. Senators and Representatives participated in the development of the COPD National Action Plan and were instrumental in obtaining Medicare benefits for pulmonary rehabilitation. This is why one of our IMPACT 2020 goals is to urge more legislators to join the COPD Caucus.

When meeting with elected officials, how can a COPD advocate make the greatest impact?

Sharing your personal story is key as well as information and facts about COPD. The Foundation’s website has a significant amount of valuable information, including statistical data for every state. This includes the percentage and number of adults diagnosed with COPD, the percentage of people out of every 100,000 who die per year and the annual cost for treatment. This is all state-specific and this type of information can be very powerful when meeting with the elected officials for your state.

What advice do you have for IMPACT 2020 participants?

Our legislators and members of the House Appropriations Committee are responsible for securing funding for COPD. The skills we develop during IMPACT 2020 will empower us to call upon our elected officials to address the many concerns of those affected by COPD. So, be sure to do your homework each week, participate in all the webinars and, when it comes to your personal story –practice, practice, practice! Finally, be confident and remember that you are the expert when it comes to COPD and by telling your story, you will help drive change!