Assistance Programs Help Families Cover the High Cost of CF Medications, Care

Learn how the Foundation helped Carrie Cox afford the CF medications her sons need to stay healthy.

Aug. 31, 2015 | 2 min read
Dora Nagy
Carrie Cox is the mother of three wonderful boys. Her two youngest sons, Cameron and Riley, have cystic fibrosis.

Carrie and her husband work hard. They are self employed and have individual health insurance. For years, Carrie tried to manage the financial challenges of having two young children with CF alone. Even when out‐of‐pocket medical expenses began to pile up, she felt guilty about asking for help.

That changed when Cameron began treatment on TOBI. The family's co‐pay for the drug climbed to $1,000 a month, and Carrie knew she couldn't cover the costs on her own.

“As CF moms, we try to take on everything ourselves,” Carrie said. “But I finally recognized I could not do this by myself. It was just getting to be too much.” 

Getting the Help She Needed

After talking with her CF care team, Carrie discovered a range of organizations that offer financial support for CF patients and their families. 

She first learned about a nonprofit that helps the under‐insured access needed health care, then about a co‐pay assistance program that helps CF patients and their families afford the medications and devices they need to stay healthy. What's more, she learned that these organizations often work together to make sure patients get the help they need.    

Carrie reached out and has been able to get all medicine covered for both of her sons. Her stress level is now manageable: without the assistance programs suggested by her CF care team, the monthly cost of medications for her sons would be more than her mortgage payment.   

“CF is a disease that requires a lot of management -- sometimes I feel like I'm living by a timer, trying to stay on top of the boys' treatments -- so it was incredibly helpful that the staff would even make phone calls on our behalf,” she said. “They do a lot of the footwork for you.”

Learn more about how the Foundation helped Carrie afford the CF medications Cameron and Riley need to stay healthy.

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.

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Dora previously worked at the Foundation as a writer and editor. During her tenure, she loved to listen to others share their memories and experiences, and consumed storytelling in all of its different forms. She constantly looks for the uniqueness in everyone's story. Dora has a B.A. in communications from the University of Maryland, College Park, and an M.S. in public policy and administration from the London School of Economics. Born in Budapest, Hungary, Dora was raised mainly in the Washington, D.C., metropolitan area where she currently resides today.

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