BROOKLYN PARK, United States, Jan 29, 2020 (BSS/AFP) – The Maccoux family
receive visitors to their beautiful home in a Minneapolis suburb with an
infectious warmth that belies the fact their youngest daughter Olivia has had
more than 140 brain surgeries, all by the age of 24.
Mom Cathy smiles tenderly as she scrolls through photos of Olivia on
hospital beds at various ages, from a baby to toddler to a teen.
“That’s just a hole in her skull from one of the shunts, isn’t that
crazy?” she says.
And dad, Dan, is close to laughing as he reads from bills sprawled out on
a table cataloguing medical costs going back to 1996 — including parking
tickets and hospital meals.
“Very surprisingly, very few people have a love of records,” says the 57-
year-old independent consultant in the semiconductor industry.
The family’s case is a telling illustration of the flaws of the US health
care system, which Democratic candidates for the White House have promised to
overhaul or scrap ahead of their first primary contests in February.
Despite spending the most on health care in the world, 27.5 million
Americans are without any health insurance.
And for the “lucky” insured, sky high costs can lead many to bankruptcy,
or as in the case of the Maccoux, indebted for life.
Olivia was born three months early, which is at the root of her
misfortunes.
She has a rare condition called hydrocephalus, meaning fluids build up in
the cavities of her brain that require valves and catheters to drain down
toward the abdomen.
But the devices have needed to be changed dozens of times — not to say
anything of the epilepsy she experiences, among several other neurological
conditions.
“I grew up with no hair,” she says of her childhood.
But the Maccoux family are fortunate in one respect: Dan has a six figure
income, and has always had health insurance.
When he worked for a company, his insurance coverage was “gold,” he says.
The problem is that in the US, coverage rarely covers 100 percent of
people’s needs. The system is largely privatized, and reimbursements to
patients depend on negotiations between a hospital or pharmacy and the
insurer.
The level of reimbursement varies from case to case. There are different
levels of “deductibles” — the amount paid by the patient before the
insurance kicks in, as well as “copays,” the fixed amount of out-of-pocket
costs for doctor visits or drugs once the deductible has been met.
“It was the copays I think that killed us because we had so many
appointments,” said Cathy. “We were drowning for a while because it was just
constant, constant.”
– Advised to divorce –
Dan sat with an AFP team and added up the columns on spreadsheets he has
used to calculate costs since 2005, the year he began documenting expenses in
detail (before that, he has estimates).
Across a total of 15 years, it came to $100,000 for out-of-pocket costs,
$22,000 for prescription co-pays, $15,000 for meals during
hospitalization…with provider co-pays and parking thrown in, totaling
$192,000.
From 1996 to 2004, he estimates the costs were around $130,000 — with the
two figures combining to around $322,000.
“Considering the catastrophe, we did relatively good,” said Dan. “We
probably had a couple dozen times where a provider turned it over to a debt
collector and those situations were probably the hardest to deal with.”
The house in which they live has served as a piggy bank for their debts:
the family has borrowed money by remortgaging it, a permanent financial
juggle.
In 2001, their woes multiplied when their second youngest, Traci was
diagnosed at the age of 11 with complex regional pain syndrome, a rare
affliction that started in her leg and spread to her arms (their eldest,
Amanda, is fine).
The family has on occasion turned to GoFundMe to raise money for the two;
the platform has become indispensable for Americans trapped in medical debt.
“We’ve had people tell us you should get a divorce,” said Cathy, as a
financial strategy. Under this plan, she would have taken custody of the
children and, without being employed, would have benefited from public
coverage.
The couple never considered it.
Obamacare, the insurance reforms enacted by former president Barack Obama
in 2010, helped the family by removing lifetime caps previously imposed by
insurance companies on their payouts.
It also prevented insurers from refusing patients coverage on the basis of
having a pre-existing conditions — something that would have made the family
pariahs when Dan left his company and went freelance.
In the last few years, things have improved markedly, said Dan. Olivia and
Traci are still sick, but have successfully moved to state health insurance,
a more comprehensive package that reduces the burden of out-of-pocket costs
on the family.
Olivia finished college last year. “Neurologically I’m doing a lot
better,” she said.
But the system isn’t finished yet with the parents. While Obamacare helped
the family in some ways, it also sent their insurance premiums soaring. For
this year, Dan and Cathy are paying $1,261 a month. Any reimbursements won’t
kick-in until they reach their annual deductible of $6,400 each.
“We all have to laugh,” said Dan. While his friends are discussing their
retirement plans, “I’m like, I’ll never be able to retire!”