By the time Elena Hung's daughter turned 5 months, she'd racked up more than $3 million in medical bills. Xiomara was born fighting for her life, with a rare disorder called tracheobronchomalacia, which causes her trachea to collapse when she breathes.
Her name means "ready for battle."
For Hung, any debate about health care is intensely personal. That's why she and an army of parents have flooded Capitol Hill in recent weeks. They're not paid lobbyists or political insiders, but they're desperate for lawmakers to know their children's stories and to put a human face — a child's face — on abstract debates about insurance lifetime limits, Medicaid funding and pre-existing conditions.
“We didn’t plan to have kids like ours. It happened. It is not like you can plan to have a million dollars in the bank,” said Hung, whose daughter also has chronic lung disease, kidney disease, pulmonary hypertension, and developmental delays. Hung's insurance covers most of Xiomara's medical costs, and she relies on Medicaid to cover much of the expensive medical equipment she needs.
Hung, 39, is a private person. She's not entirely comfortable talking about herself and lobbying lawmakers.
But she is part of a group of unlikely lobbyists — parents who were far too busy caring for children with extensive medical needs to meddle much with politics, until the push to repeal and replace the Affordable Care Act put their children's needs in the spotlight. The Congressional Budget Office estimates that about 22 million people will lose medical coverage if the health care bill under consideration in the Senate, The U.S. Better Care Reconciliation Act, passes. The bill has stalled in the Senate recently; senators return from their week-long July 4 recess on July 10.
Hung says it feels strange to focus so much outside attention on Xiomara's health when Hung has spent three years fighting to make sure her daughter would not be defined by her medical condition and would get the chance to do "normal kid" things, like go to the zoo and to preschool. Plus, it's exhausting: she stays up until 2 a.m. some nights to work on lobbying plans.
But she thinks it's worth it. If Medicaid cuts affect Xiomara's medical care, it could make it harder for her to go to the playground or enjoy "Sesame Street." When Hung puts it that way, she says she sees a change in lawmakers and congressional staffers.
"This is my life. When you say that a second, third, fourth, and fifth time ... then it gets through," she said. "I felt like it did make a difference and we were heard."
Among parents' top concerns is the prospect that the new health care reforms may allow insurance companies to put lifetime caps on health coverage. Before the ACA, insurance often limited lifetime coverage at $1 million.
“These kids reach their lifetime maximum before they even come home,” said Michelle Morrison, 33. Her son Timmy was born with a rare condition; his medical care in just his first six months of life exceeded $2 million.
Timmy’s medical needs did not end when he left the hospital. The now 6-year-old boy has been under anesthesia 45 times and travels from home in Maryland to Cincinnati Children’s Hospital for treatment. A recent hospital stay for three nights cost $16,612.77. It costs $1,354.16 a month for his respiratory equipment.
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Morrison’s insurance covers much of Timmy’s expenses but she knows he will reach the deductible half way through the year.
"People refer to kids like Timmy as 'medically fragile,' which, in some ways, is kind of true," Morrison said. But she says her husband likes to call it "medically strong," instead. "Timmy has fought off more than most of us will in a lifetime."
Hung and Morrison know that their senators from Maryland oppose the new health care bill, so the women identified 10 states — Alaska, West Virginia, Maine, Nevada, Arizona, Colorado, Ohio, Pennsylvania, Louisiana, and Arkansas — which, at that time, had undecided senators. They asked families in those states for stories about their medically fragile children, and have been collecting them on a website. They collected 161 stories from 41 states and spent five days visiting 41 senate offices. They had 19 meetings and shook hands with seven senators. They've tried educating staffers and senators about lifetime limits.
Hung said Xiomara thought her Senate visit was "a very strange play date."
Hung and Morrison are not alone. Some parents have a bigger soapbox — late-night talk show host Jimmy Kimmel revealed in a tearful opening monologue in May that his son was born with a heart defect and nearly died. He noted that before the ACA, congenital heart defects often counted as a "pre-existing condition" that would prevent someone from getting insurance coverage, and he urged lawmakers to think about how their health care changes would affect children.
"If your baby is going to die and it doesn't have to, it shouldn’t matter how much money you make," he said. "I think that's something that whether you're a Republican or a Democrat or something else, we all agree on that, right?"
Other parents are sharing their stories on social media.
Ali Chandra tweeted out the bill from her son Ethan's most recent heart surgery. With her insurance, the cost to her was $500. Without insurance (or if her insurance had imposed a lifetime limit on care, which Ethan would have already used up in his short life), the bill would have been $231,115.
"A lifetime cap on benefits is the same as saying, "Sorry, you're not worth keeping alive anymore. You're just too expensive," Chandra tweeted. "Tell that to the boy who just tucked a sick firefly into bed with a leaf blanket and told me to keep the light on so he wouldn't be scared."
Ethan was born with heterotaxy, a rare condition that includes heart defects and organs being located in the wrong places. In his short life, Ethan has had four open chest surgeries and eight procedures under anesthesia. At the end of this summer, he will have a heart catheterization and dental work.
“Because he needs more does that make him less valuable or less worthy of trying to save? I don’t think so,” said Chandra, 33, of New Jersey.
Between medical procedures, Ethan enjoys playing in the mud and jumping off the couch, like any toddler. Seeing him be a child reminds Chandra of what’s at stake.
“From the day they are born that is what you are fighting for," she said, "for them to not just live, but to thrive.”