An Interview with Janice Cotton, State Captain Illinois and IMPACT 2020 Advocate

Posted on September 29, 2020   |   

This article was written by Christina Kononenko, BA, MSEd and Janice Cotton, State Captain Illinois


The COPD Foundation recently had a virtual chat with Janice Cotton, State Captain for Illinois for the last 10 years and IMPACT 2020 participant/advocate. Read on to learn more about Jan and her advocacy work.

Tell us about yourself.

I am an individual living with COPD, diagnosed in 2000. The impact of my diagnosis was devastating, to say the least.

What prompted you to advocate in the first place, and what continues to drive you to this day?

Listening to other people living with COPD who are in pain because of not getting answers to questions about their condition, their medicines, Medicare, and disability prompted me to start working for others. I had been through the process. Although I was still learning and searching for answers, I could certainly share what I had learned.

What types of advocacy work have you done to date?

I have held health fairs, spoken at pharmaceutical conferences and worked on panels giving the patient perspective on what our needs are and how clinicians can best help us.

Why did you decide to participate in IMPACT 2020?

Having worked on Lobby Day on Capitol Hill, I have knowledge of the process and what it takes to get our voices heard.

Why is advocacy so important to the COPD community?

People need to know where they can get good advice and direction. They must never feel alone or neglected. COPD comes with enough isolation. We have to persevere. An advocate can be that voice. Not everyone is equipped to speak and be heard. It takes a special person to stand up for others. We must continue to raise awareness.

In your view, describe the role of an advocate.

To me, an advocate is a defender – a protector of rights – and a counselor when speaking to lawmakers, pharmaceutical companies, and other stakeholders. Individuals living with COPD need to know who their COPD Foundation State Captains and lawmakers are. This helps tremendously in getting policies changed or enhanced.

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

Tell your story. Let the elected official know how many people are affected by COPD in your state and COPD is the fourth leading cause of death in the United States. We want them to know that affordable medicines and rehabilitation facilities are needed. There is no CDC funding for COPD; this is unacceptable. And, of course, we want our elected officials to become members of the Congressional COPD Caucus.

What advice do you have for anyone thinking about becoming an advocate for the COPD community?

Speak your truth. Tell your story. Stand up and be heard. Just thinking about how much my life has changed since my diagnosis was enough to make me want to participate and be heard.

What does advocacy mean to you?

Advocacy means being that voice, that defender. It means doing everything I can to raise awareness and be heard. It also means being actively involved in my own treatment plan, including medications and making sure that clinical trials include patients’ needs. It means speaking for those who cannot, fighting until the bitter end and never, ever giving up. I may die with COPD, but not from COPD.

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