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 Yet none of the plans cover all the complex medical care needed for
his seven-year-old son, Gabriel.
Born with an extreme form of Chiari malformation, Gabriel required
surgery to reinsert a part of his brain into his skull. He lives
with hydrocephalus, or extra fluid in his brain, and spina bifida,
which causes abnormal development of the spinal cord.
The Brookharts' insurer, Regence BlueShield of Washington, said in
June it would exit the Obamacare markets in 2018, citing unsettled
marketplaces across the country, a move common to many insurers
uncertain about the program's future under President Donald Trump.
All of Gabriel's specialists, who span multiple medical centers and
practices and have been coordinating his care for five years, were
covered under Regence.
Based on the limited options for 2018 enrollment, the Brookharts
plan to pick an insurer that will cover some of Gabriel's care and
expect to pay tens of thousands of dollars for the rest of his
needs.
"I would pay a high price for a good policy. It's just mind-boggling
to me that it doesn't exist no matter how much I would want to pay,"
Brookhart said.
Gabriel's case shows how difficult it can still be to find adequate
healthcare for very complex conditions four years after Obamacare
took full effect. In many cases, an insurer will cover medical care
but not certain prescription drugs. In other cases, an insurer may
cover one specialist doctor but not others, or cut expensive
academic medical centers out of their networks to lower costs.
Patients with complex medical cases often take high-cost
prescription drugs, rely on specialists who sometimes coordinate
their care and may require sophisticated surgeries, among other
needs.
The challenge of finding adequate healthcare on the Obamacare market
is expected to intensify as the Trump administration strips away
aspects of the law, healthcare experts say.
"Instability is just a very stressful thing for people dependent on
a stable connection to the healthcare system," said Daniel Polsky,
professor at the University of Pennsylvania and executive director
of the Leonard Davis Institute of Health Economics. "Even just a
change of doctors could result in some difficult health
consequences."
RESTRICTED CHOICE
U.S. consumers have often complained that subsidized health
insurance under former President Barack Obama's Affordable Care Act
restricted their choice of doctors, or forced them to change
providers. In some cases, that may mean switching primary care
providers. But for patients with serious medical needs it can
prevent them from seeing their specialists.
The Obama administration attempted a fix, directing more federal
oversight of the plans, requiring transparency from insurers on what
they did, and did not, cover and setting guidelines for insurers to
cover enough healthcare providers.
Trump has promised to repeal Obamacare and is using executive powers
to undermine it, including a rule finalized in April that allows
individual states to determine whether insurers provide enough
access to doctors.
The administration has also proposed giving states more authority
over their insurance markets and allowing them to water down some
Obamacare benefits in 2019. That could create wide discrepancies in
access to doctors among states, said Sabrina Corlette, an expert on
health insurance markets at Georgetown University.
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There is no national estimate of how many people with complex
medical cases may struggle to find a plan that covers their
particular doctors. About 2.2 million people on the individual
market have some form of a pre-existing chronic condition, according
to Avalere Health, a research and consulting firm.
Seventy-three percent of the Obamacare 2018 individual market is
comprised of restrictive plans, or those that cover fewer providers,
according to Avalere, up from 68 percent in 2017 and 54 percent in
2015.
Research has shown that insurers are more likely to offer limited
access to doctor practices in markets where they compete against one
or more rivals. This helps keep insurer costs down, and therefore
allows them to offer lower prices.
Matt Slaby of Denver, Colorado, can choose between six Obamacare
insurers, but none cover all the care for his genetic blood clotting
disorder, called Factor V Leiden. He relies on the bloodthinner
Xarelto, which costs about $400 per month without insurance, to
prevent life-threatening clots.
His insurer from last year, Cigna Corp <CI.N>, dropped his plan from
the Denver market for 2018.
"There are no plans that cover everything I need," Slaby said.
"Finding two or three, the intersection of things that keep me
alive, that's the challenge."
In U.S. counties with a single insurer, there is less incentive to
whittle down the provider list because there is no competition. The
departure of major insurers including Aetna Inc <AET.N> and Humana
Inc <HUM.N> from Obamacare markets has left about half of U.S.
counties with only one insurer selling plans, up from one-third in
2017.
But that does not guarantee that a sole insurer in a market will
cover medical care at any specific hospital or physician practice.
In Virginia's Chesterfield County, a single insurer, Cigna, is
offering Obamacare coverage, presenting a tough choice for Jodi
Smith Lemacks, whose son was born with a heart defect. The plan does
not cover her son's specialists at Children's Hospital of
Philadelphia (CHOP) five hours away, where Joshua Lemacks, 14, has
been treated since he was in utero for hypoplastic left heart
syndrome.There is no cure for his condition. In three major
surgeries, doctors at CHOP have rerouted Joshua's anatomy so that
his blood can pump through one heart chamber instead of two. They
have also provided medication, some through a clinical trial, to
help prolong his heart's ability to function in this way.
Lemacks spends $6,000 to $7,000 a year out-of-pocket for Joshua's
medical expenses, and once had medical debt close to $100,000 due to
the surgeries. She decided to put him on her employer's plan for
2018, but says if anything were to happen to her job at a nonprofit
or she chooses to change jobs, she would need to return to the
Obamacare market.
"You do everything you can to protect your kids but at the end of
the day if you can't get coverage, you can't get coverage," she
said.
(Editing by Michele Gershberg and Edward Tobin)
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