9-Year-Old With CF Needs Health Care Protections, Says Mother

A mother worries that her son may lose access to crucial cystic fibrosis medication if proposed health care reforms are carried out.

Feb. 22, 2017 | 3 min read
Paydon Miller

Rebecca and Brock Schroeder's lives were turned upside down with the birth of their first child, Brady -- and not in the happy chaotic way new parents expect. Brady was diagnosed with cystic fibrosis at 2 weeks old.

“It was the darkest time of my life,” Rebecca says. “I didn't feel like I could trust my instincts on how to take care of my son. There are entire months where I can't recall anything at all. It was overwhelming.”

By age 4, Brady was in what Rebecca calls a “constant battle between surgeries and antibiotics,” and had already undergone two respiratory procedures.

“We used to hear every breath when he was asleep,” she says. “There's nothing worse than having a front row seat to your child's suffering.”

However, a new medication had just been approved to treat CF and after starting the treatment, Brady's health began to improve dramatically. He regained his sense of smell and his appetite, which made it easier for Rebecca and Brock to get Brady proper nutrition. And, for the first time in his life, Rebecca and Brock couldn't hear Brady breathing while he slept.

But Brady's new medication regimen brought new challenges. Although the family had quality health insurance through Brock's employer, the medication's price tag started to weigh on their minds. What if annual coverage caps limited their ability to get Brady the medication he needed? What if they reached a lifetime coverage cap that denied them access to the medication completely?

“I started thinking about what I would do if this life-saving miracle got taken away from us,” she says. “Being so dependent on something that is so expensive means that it's always in the back of your mind.”

Rebecca fears that at some point, Brady, who is 9 now, will struggle to get the medication that has improved his quality of life. She specifically points to laws that are critical to Brady's long-term health: those that prevent insurance companies from denying coverage due to a pre-existing condition and setting annual and lifetime coverage caps. She worries that new legislation could weaken these protections that Brady relies on to stay healthy.

“I just want everyone to be aware of the consequences of lack of access and coverage and the gory details of living with cystic fibrosis. Having CF is almost like having a part-time job. It requires a lot of work, but the CF community is full of fighters.”

Congress needs to hear from you about the vital role adequate, affordable health care coverage plays in helping people with CF live longer, healthier lives.  Send your member of Congress a message and ask him or her to ensure that the care and coverage needs of people with CF are protected.

Learn more about the Foundation's work to help ensure that any changes to health care reflect the unique needs of the CF community.

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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Paydon previously worked at the CF Foundation as a Public Policy and Advocacy Communications Manager. Prior to joining the Foundation, Paydon spent three years working for Enroll America -- a national non-profit dedicated to helping consumers understand and navigate the Affordable Care Act -- most recently as National Communicators Program Director. A Wisconsin native, Paydon is a competitive homebrewer, a fair-to-middling banjo player and an avid bicyclist. If you're curious, his father named him after Paden, who is a character in the movie “Silverado.” Follow @Paydon on Twitter.

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