Teaching as We Learn: Visiting a CF Care Center with Policymakers

A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.

| 4 min read
Stacey-Falardeau-Headshot-Square
Stacey Falardeau
Stacey-Falardeau-Legislator-Care-Center-Visit-Rectangle

Collaborating with care centers is an important part of my work as someone who specializes in state policy at the Foundation. As the experts on the clinical needs of people with cystic fibrosis, care center staff are often best-positioned to educate lawmakers and policymakers about the importance of access to specialized care and treatments. 

Earlier this summer, I visited a care center for the first time, when Lurie Children's Hospital of Chicago hosted a tour to educate Illinois state legislators about CF and give them a glimpse into a day at a clinic. It was a unique opportunity to introduce staffers from state legislative offices to the CF community -- one where we could show, rather than tell, the CF story. 

We started our day with a quick “CF 101” led by Dr. Susanna McColley. She described the unique CF care model and how the clinic brings together a multidisciplinary team of experts to provide specialized, high-quality care. Dr. McColley talked through the exciting advances in CF care and what state Medicaid programs can do to ensure that CF therapies get into the hands of the people who need them. After learning about CF and the care and treatments provided at the center, we were off to see the clinic in action.

Stacey-Falardeau-Legislator-Care-Center-Visit-Rectangle
Gowned up: I knew infection control was important, but I was surprised to learn that each clinic staff member (and visitor) must wear a gown when entering a treatment room to avoid passing germs between CF patients. (From left: Jeanine Robinson, Chief of Staff for State Representative Christian Mitchell; Stacey Falardeau, CF Foundation; Brittan Bolin, CF Foundation; Susanna McColley, MD, Associate Director, CF Center; Nicole Niwa, Office of the Republican Leader, Illinois House of Representatives)

 

When we arrived on the clinic floor, Dr. Adrienne Savant showed us where people with CF meet with the care team and described a typical day at the clinic. I was surprised to see that the center didn't look any different from a regular doctor's office. What made the tour unique was the opportunity to “gown up” and enter a treatment room to chat with a girl with CF and her mom. We talked about her CF and what a typical visit to a clinic is like. We met Claire* (who was 12 and celebrating her half-birthday!) and her mother, Kim,* a fierce advocate for her daughter's health care. For Kim, keeping Claire healthy is a full-time job -- she spends countless hours each month staying on top of her daughter's health care needs.

As she told Claire's CF story, I pictured Kim's calendar packed with reminders for when she has to call back and forth between the insurance company and the pharmacy to ensure that Claire always has a supply of medications. I felt her frustration as she recalled the many times she has had to explain to her insurance company why Claire can't simply go to the emergency room when she is sick, why she needs to receive her care at an accredited CF center like Lurie. We all felt the burden that this family and many others face daily, and we were inspired to help. The legislative staff who joined the tour with us promised to share Claire's inspiring story and all they had learned about CF with their bosses -- Illinois state representatives.

Stacey-Falardeau-Legislator-Care-Center-Meeting-Rectangle

The care center tour is a great example of how the key to advocacy is deploying the right message to the right people at the right time. Every voice in the CF community -- people living with CF, their loved ones, their care team members and others -- tells an essential piece of the story that helps lawmakers and policy makers understand this complex disease. If you are interested in becoming an advocate, please contact your local chapter. 

*Names have been changed to protect patient confidentiality. 

Share this article
Topics
Our Advocacy Work | Care Centers
Stacey-Falardeau-Headshot-Square

Stacey is a senior public policy specialist at the CF Foundation. She lives in Washington, D.C. with her fiancé, Steven, and their two cats. In her spare time, you will find her at barre class or exploring the local restaurant scene.

Recent Community Posts
Struggling to Process My Son’s Rare Mutations
Blog | 6 min read
More Than a Lung Disease
Blog | 5 min read
CF and COVID-19 Couldn’t Keep Me From Running
Blog | 6 min read

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.