Family could lose dearly with GOP health care plan

COEUR d’ALENE — When you ask Brady Schroeder what his favorite video game is, he tells you No. 2 on the list before pausing to savor the sheer delight gained through causing others to wait in suspense.

Quickly, the 9-year-old’s mischievous smile turns to one of pure joy as he reveals that Castle Crashers is his favorite. Brady wants to be a teacher when he grows up. He loves playing “When the Saints Go Marching In” by memory on his keyboard. He has a knack for solving Rubik’s Cubes.

His parents, Rebecca and Brock, watch as their only child describes his favorite things to do. In their gaze is also an understanding that a groundbreaking, costly drug called Kalydeco is what allows Brady to lead the normal life he describes.

Access to the gene-modifier drug, however, is uncertain as a Republican-led national government begins its plans to repeal and replace the Affordable Care Act.

“I would move mountains to get the drug for him,” Rebecca said. “I don’t exactly know what we would do, but I’m not even going to entertain the idea of him going without the drug because it will be over my dead body.”

Brady, like the majority of the 30,000 individuals in the United States with cystic fibrosis, was diagnosed with the autosomal recessive disease shortly after he was born. The genetic disorder primarily affects the lungs and pancreas, causing severe health complications and an average life expectancy of 41.

Rebecca said the symptoms of cystic fibrosis appeared when Brady was only two-and-a-half-weeks old. A thick, sticky mucus was obstructing Brady’s lungs and blocking his pancreas from releasing the digestive enzymes needed to process food.

In the days after the diagnosis, as she watched her firstborn struggle to gain weight while in almost constant stomach pain, Rebecca said she went into a dark place. Both Rebecca and Brock come from scientific backgrounds they said caused them to dive into researching the disease, but even that brought fear.

“It was awful for us,” Rebecca said. “We were first-time parents. We were scared already because it’s like ‘What do I do with this little thing?’ The more I learned about CF in those early stages, the scarier it got for me. We didn’t know what kind of future we could count on for Brady.”

AS BRADY grew older, dealing with the symptoms of his cystic fibrosis — including multiple surgeries, two hours a day of breathing treatments using a heavy device around his chest, and more than two dozen pills — became a part of the Schroeders’ daily lives. Sleep was rare for the family because Brady would constantly snore and snort while struggling to get air.

When Brady began taking Kalydeco in 2012, Rebecca said, everything changed. The drug makes a dysfunctional protein in Brady’s body work again, resulting in the child breathing effortlessly for the first time in his life.

“It was like a miracle. I don’t know how else to describe it,” Rebecca said. “It’s changed the quality of his life in immeasurable ways. It’s anticipated to add decades to his life expectancy.”

“And with this amazing drug comes an amazing cost,” Brock added.

Brock is insured through his employer, which covers the $30,000 a month the Kalydeco would cost. Without insurance, the 26 pills Brady needs to take each day to eat and breathe would cost the Schroeders $419,359 annually.

The Schroeders said the Affordable Care Act has helped Brady in two major ways. Under the act, insurance providers can no longer implement annual or lifetime caps on benefits.

With caps on benefits, Brock said, Brady would have reached his $2 million lifetime cap this year. That cap would have required Brock to find a new employer with a new insurance policy. However, without the Affordable Care Act, Brock said the family still could have run into problems because of Brady’s pre-existing condition.

BUILT INTO the Affordable Care Act are three protections for individuals with pre-existing conditions: insurance companies cannot refuse the sale of a policy because of a pre-existing condition, insurance companies cannot charge an individual more money for that policy, and insurers cannot carve out coverage in the plan to exclude benefits that treat the pre-existing condition.

“For people with cystic fibrosis, for people like Brady, having health insurance is not an optional thing,” Rebecca said. “It’s life or death. The changes that are coming are very concerning to us because we depend so much on health care.”

The budget rules Congress is currently using to avert a filibuster in the Senate forbid the Republican majority from repealing much of the ACA that does not affect government spending. But that’s just one phase of a three-tiered plan for health care that could see the government take steps back on caps and pre-existing condition protections.

“If any one of them (protections) is not in there, the other two are worthless,” Rebecca said. “To prevent discrimination, all three of them have to be in there and no less than having them written into law is good enough.”

“There’s a lot of loose talk that the insurance companies will do right by us,” Brock added. “I don’t understand how they’re coming to that conclusion because, prior to the ACA, the insurance companies had that option as well. They had the opportunity to not provide caps, but they didn’t.”

The GOP legislation, the American Health Care Act, would eliminate the current mandate that nearly all people in the United States carry insurance or face fines.

It would use tax credits to help consumers buy health care coverage, expand health savings accounts, phase out an expansion of Medicaid and cap that program for the future, end some requirements for health plans under President Barack Obama's law, and scrap a number of taxes.

DURING THE presidential campaign and as recently as January, President Donald Trump repeatedly stressed his support for universal health coverage, saying his plan to replace the Affordable Care Act would provide "insurance for everybody."

Health Secretary Tom Price said he "firmly" believed that "nobody will be worse off financially" under the Republicans' health care overhaul. He said people will have choices as they select the kind of coverage they want as opposed to what the government forces them to buy. In actuality, tax credits in Republican legislation being debated in the House may not be as generous to older people as what is in the current law.

Rep. Joe Kennedy III, D-Mass., challenged House Speaker Paul Ryan, R-Wis., who had called the GOP replacement bill an "act of mercy."

"With all due respect to our speaker, he and I must have read different scripture," Kennedy said during the debate. "The one that I read calls on us to feed the hungry, to clothe the naked, to shelter the homeless, and to comfort the sick. It reminds us that we are judged not by how we treat the powerful, but how we care for the least among us."

He added: "This is not an act of mercy. It's an act of malice."

FOR THE past five years, Rebecca and Brock have headed to Capitol Hill in Washington, D.C., to advocate for individuals with cystic fibrosis on behalf of the Cystic Fibrosis Foundation. This year’s meetings, however, felt different.

“The normal way of doing things, you couldn’t count on anymore,” Rebecca said. “There was a lot of confusion.”

Brock was able to meet with Idaho’s four congressional delegates and described the outcomes of each of the meetings as mixed. One representative in particular, according to Brock, responded to the Schroeders’ personal story of how the Affordable Care Act helped Brady by stating that it was “the worst bill ever passed in the history of the U.S.”

“It was very frustrating because you’d like to think that someone who is technically representing you is open to hearing about your experiences. Even if you fake it, at least you fake it,” Brock said. “But he had no qualms telling us that we were essentially wrong about health care.”

The Schroeders added they feel as though there is a disconnect, both in the nation’s capital and at home, between the morality of health care and the politics they feel have hijacked the debate. For the Schroeders, the debate over health care is not a political one; it has a personal impact that propels them to speak out as much as possible on behalf of their son.

“I don’t care if it’s a giraffe making the new health care plan, as long as it takes care of the needs of my child, that’s great,” Rebecca said. “We’re not going to go backward and watch the progress we’ve made be taken away from us. I’m ready to continue those conversations and go back to those offices again.”

PERHAPS IT comes from his parents tirelessly advocating on behalf of their son and those like him, but Brady too has been considering speaking to kids at school about cystic fibrosis. Brady said he wants fellow students to know about his life and why he takes so many pills at school each day.

“It’s just a part of my life,” he said. “There are tons of people in the world who have CF, and I am one of those people.”

He also wants them to know they’re a big part of what keeps the Rubik’s Cube-loving, piano-playing boy filled with joy.

“I have plenty of friends and I like to hang out with them as often as I can,” Brady said. “Friends can always make you happy.”

- • •

The Associated Press contributed to this story.