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Mom of son with rare disease says healthcare decision is about more than 'politics'

COEUR D'ALENE, Idaho - At a mature 'almost-ten-years-old,” Brady Schroeder counts Joseph Haydn at the top of his favorite songs to play on the piano.

“I like to play this song I practiced for my talent show called the “German Dance,” he said. 

Another of his interests ? Science. He turns ten next month and is already excited for his science-themed birthday party. It'll be similar to the party he had when he turned eight, during which he donned an Albert Einstein wig. 

Brady's curious, his mom says, which makes science a likely fit for him.

“I mostly like just all the stuff you can do, with all the stuff like dry ice. Especially that,” Brady said.

Science gives Brady the  freedom to experiment, build and do pretty much anything- the kind of freedom that, in the rest of his life, has been limited by cystic fibrosis.

“It made me have some trouble breathing,” he said.

Brady was diagnosed with the genetic disease when he was two weeks old. It affects his whole body, but especially his lungs and digestive system, meaning it requires major treatment..

“When I first started, I was terrified,” he said. 

He's used to it now. The vest he sometimes wears to help with breathing issue and the nearly 40 pills he takes in a day- it has all become a part of what's required, for Brady, to just be a kid.

“It's a part-time job for a child with cystic fibrosis to maintain their health,” said Brady's mom Rebecca Schroeder.

But with this job, it's the Schroeder's that have to pay.

“Brady swallows close to 40 pills a day. That has a cost of over a $1000 a day,” his mom said.

One of those drugs is Kalydeco (ivacaftor). It's a drug that 's specifically tailored to Brady's cystic fibrosis. Rather than just treating the symptoms of  the disease, the drug, in a way, tricks Brady's body into believing that it doesn't have cystic fibrosis. As a result, he can live more normally.

According to info from the Cystic Fibrosis Foundation (CFF), Kalydeco costs over $32,000 per month.

“I am fighting for what I know my child needs and what the foundation that supports us says he needs and what the American Medical Association says he needs,” Schroeder said.

Under their current medical insurance, the Schroeders are able to keep Brady on his treatment. But, Rebecca worries that the healthcare proposal currently in the Senate would limit certain benefits like lifetime caps and Medicaid. According to the CFF, Medicaid helps provide coverage for half of children with CF, and a third of adults who have the disease. 

“While my lawmakers understand what it takes to take care of Brady and others that have complex conditions like his... they are maybe not really listening and understanding the true human impact behind this legislation,” Schroeder said.

Schroeder is the co-chair of national advocacy for the CFF. She has taken Brady's story to Washington, D.C.  several times, to speak with Idaho lawmakers.

In fact, she was in D.C. Last week, when the Senate released it's proposal. She spoke with Senator Mike Crapo, who indicated he would be voting for the bill. He has also expressed public support for the bill, calling it a “promising step toward maintaining affordable care,” in a statement on his website.

Senator Jim Risch has not publicly commented on the bill. He told the Idaho Statesman on June 22 that he would be reviewing it.

Schroeder has also made her case to Congressman Raul Labrador, who voted in favor of the House version of the bill that passed in May.

She said she's frustrated by those discussions, but she wants to be clear: To her, and to her family, this is not a discussion of politics or party lines.

“Any, any lawmaker that stands up to help me access the things that I need for my child will be my hero,” Schroeder said.