Who Should Pay For Evan Karr’s Heart


“It’s Bloomin’ Monday!” the server at Outback Steakhouse
in Louisville, Kentucky, told us. “That means free bloomin’
onions,” Sarah Karr whispered across the table to me. “Sure,
we’ll have one,” she told the server.

Did you know they actually don’t eat blooming onions in
Australia?” said Sarah’s son Evan, a disarmingly self-possessed
13-year-old with a wave of thick, dark hair. He’d picked the
restaurant — his favorite — as a sort of celebration before
Thursday, when he will undergo open-heart surgery. Evan was
born with tetralogy of Fallot, a four-part heart defect, and
the surgery, his fourth open-heart procedure, will replace the
left and right pulmonary artery branches with a valved conduit,
as well as his pulmonary valve

A few miles down the road, the security precautions for
President Trump’s rally at the Louisville Expo Center, which
would start in a few hours, were underway. Helicopters buzzed
overhead; cops were posted up every quarter-mile along the
freeway. People wore shirts that said “MAKE KENTUCKY GREAT
AGAIN,” and “BUILD THAT WALL,” with a map of Kentucky and a
little walled area referring to Louisville — one of just two
counties in the state that Trump did not win.

View this image ›

Evan Karr poses for a photo in
his bedroom in Shepherdsville, KY on March 20, 2017.
Maggie
Huber for BuzzFeed News

ID: 10748114

Evan has the sort of confidence that kids who grow up only
children often do: He knows how to speak like an adult to an
adult; how to make small talk like a mini politician. For many
reasons, he seems much older and more wise to the world’s
complications than a 13-year-old should. After surgery, he’ll
have three weeks of recovery, one of which is his spring break.
Sarah — a 39-year-old single mom — will take her vacation days,
her sick days, and her unpaid family leave days to be with Evan
the entire time. They have insurance through Sarah’s job at
UPS; his prognosis is good. And that, of course, is what his
mom cares about most.

“Every parent I know with a sick child will do whatever it
takes to make that child well,” Sarah said. In the past, she’d
charged co-pays for Evan’s medical care and anything their
insurance wouldn’t cover — between $3000 and $5000 — to credit
cards. But this time, five of her friends from work decided
they would do what she wouldn’t have been able to bring herself
to: put a page
up on YouCaring, a health care crowdfunding platform, to ask
for help with the $5,000 co-pay for Evan’s heart surgery. With
two days until the procedure, she’d
raised just over $2,900.

This is the state of health care in America: Even the insured
may go deeply into debt or resort to crowdfunding to keep
themselves or their children alive. Evan has a relatively rare
condition, but the Karrs’ situation is far from unique. In
2016, the
annual cost of health care for a typical family of four
with employer-insurance coverage was $25,671 — with 43%
($10,473) covered by the employer. That’s triple what it
cost to insure an average family in 2001.
One in three Americans have problems paying their medical
bills: They pay them with credit cards, they struggle to keep
up with hospital payment plans, they’re forced to declare
bankruptcy. Those who
struggle the most with medical debt are, ironically, the
insured — who, like the Karrs, struggle to cover the
accumulated costs of monthly premiums, deductibles, co-pays,
and out-of-network fees.

Today, Republicans in Congress are working to rescind the
Affordable Care Act and replace it with a plan that would
result in skyrocketing insurance premiums,
rising deductables, and the loss of coverage for an
estimated
18 million people. For people with chronic illnesses — who
don’t have financial safety nets — anxiety will become the
norm.

Even with the insurance they have now, Sarah and Evan are on a
knife’s edge. And their fear and anxiety is, in many ways, the
country’s. Paying for health care is already hard. And there’s
a distinct possibility it’s about to get worse.

When Evan was born, Sarah was instructed not to let him
cry, because his heart wasn’t strong enough for it. She was 26,
married to Evan’s father, whom she’d met at church, and in her
eighth year of working for UPS. She’d found that job when she
was still a senior in high school, had stuck with it while she
attended the University of Louisville, majoring in vocal
performance, and returned to it after graduation.

“There’s this list of ‘20 Things Not to Do in Louisville’ that
goes around on Facebook,” Sarah told me, “and one of them is
‘get a job at UPS in high school,’ because once you get that
job, you never leave.”

You don’t leave, in part, because the work is solid, the
benefits are good, and there are opportunities to move around
within the company. Sarah started in invoicing, and over the
last 20 years, has shifted to handling stats for the tech
support team. The Louisville UPS facility, like a handful of
other massive shipping facilities, including ones for Zappos
and Gilt, is just a 15-minute drive from where she lives.

Open-heart surgery costs hundreds of thousands of dollars —
numbers that whizzed by Sarah when she was a new mom, just
trying to care for her baby. “I remember some bill that said
one night in the ICU, just paying for the room, was $35,000.
Just one night!” Back then, UPS was on a different insurance
plan, and Sarah came away from Evan’s first two surgeries
having paid little more than a $15 co-pay. When Evan needed his
third surgery, UPS had changed insurance plans, and the charges
became more complicated. During that surgery, one of the
doctors in the operating room, unbeknown to Sarah, was
out-of-network. That meant an extra $3,000, along with other
costs, to put on her credit card.

Sarah was also diagnosed with MS when Evan was 4. She hasn’t
had a flare-up in months, but when she’s tired or stressed, her
motor skills decrease; she gets tongue-tied. Last year, her
doctor told her to switch medications — to a drug called
Tecfidera — to better control and contain the lesions on her
brain. The cost would’ve been $600 out-of-pocket, every three
months. But that was money the family didn’t have, so Sarah
decided she’d simply go without.

“The doctor told me that if I didn’t start taking these meds,
and keep things under control, it could mean I wouldn’t be
walking in 10 years,” Sarah said. Together, she and the doctor
found a co-pay assistance program, funded through the drug
company, which meant she wouldn’t have to pay the $600 — though
that waiver could go away at anytime, meaning she’d be faced
with a similar decision again. Her cousin, who also has MS,
can’t work. A coworker at UPS who’d been struggling with MS for
years went on disability last year; he’s no longer with the
company. When Sarah tells me about these people, her voice gets
quiet, and she looks at the ground.

View this image ›

Sarah Karr, right, listens as
her son, Evan, 13, talks about things he admires about his
mother. Maggie
Huber for BuzzFeed News

ID: 10748803

Evan and Sarah have the sort of easy companionship that
any only child, especially one who grew up with a single mom,
will recognize. They finish each other’s stories. They love
watching This Is Us and American Idol together.
They tease each other relentlessly, and know exactly what the
other likes on the menu at Outback Steakhouse.

“I don’t feel like I’m any different than any other kid,” Evan
said. “Everyone goes to the doctor. I just sometimes have to
have heart surgery.”

“Everyone goes to the doctor. I just sometimes have to have
heart surgery.”

ID: 10748419

“He made sure to schedule it so that he could back to school
and get all the sympathy from all the girls,” Sarah added.

Evan chuckled, blushing. “The only time I think about my heart
is when I’m at the pool, and you can see my scar.”

In this way, Evan is typical. One out of every 100 babies is
born with an abnormal heart of some kind, but most of those
kids go on to live generally normal lives. Thousands, however,
deal with complications. Some can’t walk; others require heart
transplants and are in and out of hospitals for most of their
childhood.

“Heart research, especially for kids, just doesn’t have the
same visibility as cancer research,” Sarah said. Heart problems
are also just less visible, in general: Kids with abnormal
hearts don’t get chemo, they don’t lose their hair. They don’t
signify as sick — which might also explain why people
aren’t as educated about their condition.

“When Evan was born, I’d never even heard of kids with abnormal
hearts. I felt so alone,” Sarah said. When she met another mom
from the area who also had an infant with an abnormal heart,
they bonded immediately and, later, founded Brave Hearts, an
organization to help families of children with abnormal hearts.
They provide fellowship and welcoming services for families;
they’re working with Norton’s Children’s Hospital to raise
funds for a
new pediatric cardiology ICU. In 2016, Jennifer Lawrence, a
Louisville native,
donated $2 million towards the project. (When they
announced the donation at a ceremony at the hospital, Evan put
his fingers up in the Mockingjay sign from Hunger
Games.
)

Evan’s phone is filled with pictures of other kids, many of
them in wheelchairs, who’ve become his friends through Brave
Hearts. Many have donated to Evan’s co-pay fund. Some are on
Medicaid, or Kentucky’s expansion of Medicaid under the ACA.
Earlier this year, a mom went into a local jeweler to sell her
wedding set — even though she was still married — in order to
pay for her child’s heart surgery. The jeweler bought the set
for far over market price, and was so touched he invited the
moms of Brave Hearts to the store on Valentine’s Day to give
them each a gift.

Sarah’s not ashamed of her YouCaring page, but it’s been a
humbling experience: It’s one thing to raise money for a
foundation, another to raise money for yourself. “Whatever we
receive over the cost of the co-pay for Evan’s surgery, we’re
donating to Brave Hearts,” Sarah said. “That makes me feel
better about this whole thing.”

View this image ›

Evan has collected these
autographed heart pillows from his previous three heart
surgeries at the Norton Children’s Hospital.
Maggie
Huber for BuzzFeed News

ID: 10749049

It’s been a tough year. Evan’s father left last June.
The following month, they had the test that showed Evan would
need another heart surgery. Sarah receives child support, and
they own a small, cozy home, but they keep their lives simple.
Sarah drives the same car she’s had since college. She recently
lost 40 pounds, and doesn’t have any clothes to fit her. Her
parents live in Louisville, but she can only ask so much of
them.

Crowdfunding health care is a
funny thing: Evan’s fund has received a few donations from
strangers, but most of the donations have come from people she
knows — which might be part of why the fund has only raised
$2,900. There’s a
hierarchy in health care crowdfunding; the stories that go
viral, and go on to raise hundreds of thousands above their
ask, are generally those with very small children or extremely
tragic circumstances. “I thought about the pictures — I mean,
should I include a picture of him in the ICU, with an IV? Is
that what makes people give? It’s a strange thing,” Sarah said.

“I’m only scared of three things,” he told me. “God,
heights, and my mom.”

ID: 10748429

No picture can adequately convey the complexity of Evan and
Sarah’s situation — or Evan’s particular charisma. He is, as
your mom might put it, just a riot. Earlier this year,
he refused to sign a pledge at school that said he wouldn’t use
drugs and alcohol. “I mean, in my life, I’m gonna have a
drink,” he explained to me back at his house, twirling around
expertly on his hoverboard. He asked me, “You know who Fetty
Wap is, right?”

He gestured towards a painting of himself hanging on the wall —
in which he wears a sort of Sherlock Holmes cap — and said,
“Look at that dashing portrait of me.” He knows all the words
to “Ice Ice Baby.” “There are only two cuss words in it,” he
said. “And some small allusions to drug use.” He’s currently
reading a World War II novel about a Polish family’s escape
from a concentration camp aloud, to his mom, at night. (“Mom,
put your hands over your ears, I’m going to tell her how it
ends.”)

Evan’s not scared of Thursday’s surgery. “I’m only scared of
three things,” he told me. “God, heights, and my mom, because
she holds me accountable, and I don’t like to disappoint her. I
don’t like to disappoint anyone.”

When his parents split up, Evan took extra care of his mom.
“I’d always made his world perfect,” Sarah said, “but now he
was forced to see things that weren’t perfect, and he grew up
fast.”

Things might not be perfect, but Evan will almost certainly be
okay. He and Sarah live just outside of the Louisville city
line, in Bullitt County — where the median income per household
is $50,000, 98% of residents are white, and Trump swept the
presidential election, with 75% of the vote. Until recently,
their modest two-level house was surrounded by farmland, where
Evan used to build forts and roam wild with his friends for
hours. He goes to a good school, surrounded by people who’ve
known him his whole life. He’s a remarkable kid, but his
family’s situation is not remarkable: Like many solidly
middle-class families, they have little to insulate them from
the effects of a lost job, or even a slight change in their
current coverage — like, say, the removal of a lifetime max, or
the end of the co-pay assistance from the company that makes
Sarah’s MS drugs.

“No one should have to prove their worthiness in order to
be cared for.”

ID: 10748434

As the evening light started to fade, Evan and Sarah took up
their usual spots in the living room: her, in a comfy,
overstuffed chaise lounge; him, in an office chair close
beside. Ten miles away, Trump was speaking to a packed house of
thousands of their neighbors, but he didn’t mention any
specifics of health care, other than to promise that Mitch
McConnell has the replacement bill under control. Kentucky had
one of the most successful implementations of the Affordable
Care Act in the nation: Over 500,000 people gained coverage;
the state’s uninsured rate dropped from about 20% to 7%,

the second-highest drop in the country, after Arkansas.

But the state voted overwhelmingly for both Trump and its
Republican governor, Matthew Bevin — both of whom promised to
eliminate the ACA. “Bevin’s like a mini Trump,” Evan told me.
“I don’t like him.” Under the Republican replacement health
care plan, analysts have speculated that 1.4 million
Kentucky residents could have caps implemented on maximum
insurance payouts over a patient’s lifetime or even a year.

“I’ve always been the most liberal at our church,” Sarah said.
“They sometimes joke, ‘That Sarah, she loves Jesus, but she
loves to curse.’ Some people even call curse words ‘Sarah
words.’” (During our entire time together, I didn’t hear Sarah
curse once.) “I was for Bernie, I really was,” she told me.
“And then when that didn’t work out, I was for Hillary. I
thought we were moving forward when it comes to tolerance, to
all of that. But it turns out I was wrong.”

“With Obama, I always felt like he had our best interests at
heart,” she told me, with something like resignation in her
voice. “And I just don’t feel that with Trump.”

It’s hard to talk to people about it. “Sometimes I want to be
like, look at Evan, look at what a remarkable kid he is, look
at what he’s going to do to change the world — you’re not
wasting anything if you pay for him to live. But I also
think that no one should have to prove their worthiness in
order to be cared for.” ●

You can learn more about Evan’s surgery and Brave Hearts —
and donate to his YouCaring fund —
here.



Source link