Kim Muszynski says Abby's improvement is "the most incredible thing I've ever seen."
Rich
and Kim Muszynski know when their 5-year-old daughter, Abby, is about
to have a grand mal seizure because her pupils enlarge, and she'll
seem to fixate something in the distance that only she can
see.
Then
it starts. Abby's extremities shake. She gasps for air.
By
the time she turned 3, Abby had tried about eight different
anti-seizure medications. None of them worked very well. Panicked to
see their daughter getting worse and worse, the drove
three hours to Orlando to see Dr. Ngoc Minh Le, a board certified
pediatric neurologist and epileptologist.
Le
told them that chances of another anti-seizure drug working on Abby
were tiny. He recommended medical marijuana. The timing was right:
Just months before, Gov. Rick Scott had legalized the use of a type
of non-euphoric cannabis called Charlotte's Web.
The
formulation had been a miracle for a little girl with epilepsy named
Charlotte Figi. The had seen her story on Dr. Sanjay
Gupta's CNN documentary "Weed."
Charlotte's
Web did help Abby, but not as much as it had helped Charlotte. She
still was having about two grand mal seizures a week, each lasting
about eight to 10 minutes.
Le
explained to Kim and Rich that Charlotte's Web has only tiny amounts
of THC, one of the psychoactive ingredients in marijuana. Medical
marijuana with higher levels of THC was Abby's best hope, he told
them.
But
at this point, in 2015, high-THC marijuana wasn't legal in Florida
for Abby. To get it, the would have to move, leaving
behind their friends and family, including two older children.
Kim thought
about Colorado, where Charlotte Figi lived. She'd checked with
parents of disabled children there, and they told her the state had a
fair and efficient Medicaid program.
Getting to
Colorado would be a challenge: Abby's doctors said it wasn't safe for
her to fly on a commercial plane or to take a long car ride across
the country.
The began
their final fight with Florida Medicaid -- one that would leave Kim
and Abby homeless for several days.
Kim says that
in mid-August, she started talking to Medicaid officials about
getting an air ambulance to Colorado. On September 19, Rich drove the
family car out to Colorado. They planned for Kim to attend the
closing on their house in Boynton Beach on September 23 and leave on
the air ambulance with Abby that afternoon.
Kim had
emailed and spoken with various Florida officials, and it seemed to
her that everything was in order. "Please give a call today so
we can finalize travel arrangements!" Mary Joyce, a senior
registered nurse supervisor at Children's Medical Services at the
Florida Department of Health, wrote in an email to Kim on September
20.
But then
several days passed, and there was still no final approval for the
transport.
Their house
sold, Kim and Abby were homeless. They moved in with Kim's best
friend and her husband. All of Abby's equipment, like her bed with
guardrails, was with Rich on their way to Colorado. Kim slept with
Abby on the floor.
Abby's cries
at night kept Kim's friends awake. Kim wrote emails begging Florida
officials for help. But for the first time, she added someone not
previously included on the email: this CNN reporter.
Three days
later, she learned that the transport had been approved.
A spokeswoman
for Florida's Agency for Health Care Administration gave this
statement:
"In this
case relocation services are not covered by Medicaid, per federal
Medicaid guidelines. However, thanks to Safety Net funds made
available by Governor Scott and the Legislature, the state supported
this family by covering the costs to provide relocation services via
the air ambulance of the mother's choice. Working with the family,
the state arranged transport as quickly as possible," wrote the
spokeswoman, Mallory McManus.
On September
28, an ambulance picked up mother and daughter and brought them to
Boca Raton Airport. Abby's grandmother and aunt said a prayer over
Abby's stretcher as it was loaded on the plane.
As they
prepared to leave, Kim said she felt like a refugee in her own
country.
"I feel
like I'm being forced out of my home," she said.
But when Kim
and Abby arrived in Colorado Springs, Rich was there to welcome them
to their new home.
'The most
incredible thing I've ever seen'
Within a few
weeks of arriving in Colorado, the felt like they'd been
visited by not one but two miracles.
First, the
high-THC marijuana has almost completely eradicated Abby's grand mal
seizures. When they left Florida, she was having about two to four a
week, each lasting about 8 to 12 minutes. In Colorado, she's had
about one a week, and they last only a few seconds: Just a drop of
high-THC marijuana oil under her tongue stops the seizures almost
immediately.
"It's
the most incredible thing I've ever seen," Kim said.
She hasn't
had to go to the hospital for seizures in Colorado at all.
The second
miracle is that so far, Colorado Medicaid has paid for all of Abby's
prescriptions and doctors' visits without a problem, a far cry from
their experience in Florida. All the hours Kim spent fighting
Medicaid can now be spent with her daughter.
Now that Abby
is essentially free of grand mal seizures, she's made strides. She
can grasp a fork. She can pick up a block and move it. These are
small steps for a typical child but huge for Abby.
And more and
more, her parents see her personality come out. She smiles and
giggles more than she used to, at a balloon floating in the room or
when her parents blow bubbles.
Kim and Rich
wonder if maybe -- just maybe -- Abby will one day be able to learn
some very rudimentary sign language to express what she wants. Maybe
she'll be able to take a step with a walker and lots of support.
Despite
Abby's improved health, it's been tough on the to be in
Colorado. Two weeks after they moved, their elder daughter,
Christina, FaceTimed Kim and Rich from Florida to show off her new
driver's license.
Kim rejoiced
with her daughter, but she later broke down in tears, knowing that
she'd missed this important milestone. She knows she'll miss other
big days, like cooking Thanksgiving dinner with her daughter and
shopping for a prom dress, and prom itself.
And recently
Christina, who's living with her biological father, has been having
dizzy spells and fainting. It pains Kim that she's not there to help
her.
On November
8, six weeks after the moved to Colorado, Florida voters
approved a ballot initiative giving more patients like Abby access to
cannabis with higher THC levels.
And about two
months before Kim and Rich left Florida, Medicaid started to give
them enough doses of Diastat, the expensive anti-seizure medication
they'd had to fight for.
Even so,
the said they still would have made the choice to leave
Florida.
The Medicaid
system there was just too unreliable, they said. They never knew when
it would stop paying for Abby's medicines or her equipment or her
respiratory therapist or if it would kick her off the program
altogether, as it did three times in less than three years.
"Florida
was unable to meet the needs of our medically fragile child,"
Kim said. "It ultimately could have resulted in her death."
Abby's not
alone
There's a
saying among Medicaid experts: When you've seen one Medicaid program,
you've seen one Medicaid program.
That's
because although there are federal standards, states have a great
deal of leeway about how they manage their programs.
Nearly four
out of 10 children in the United States are on Medicaid, and care in
one state can look very different than care in another.
Though there
are no official rankings of state Medicaid systems, experts say there
are data that can help gauge quality.
For example,
some state Medicaid programs pay doctors relatively low amounts,
which means doctors are more likely to stop accepting patients on
Medicaid.
Florida ranks
the fifth lowest in the country in Medicaid payments, paying 13%
lower than the national average, according to an analysis by the
Urban Institute of payments made in 2014.
McManus, the
spokeswoman for Florida's Agency for Health Care Administration,
noted that the Urban Institute numbers are based on fee-for-service
physician rates, but the state's Medicaid program predominantly
operates managed care plans. The state says it has transitioned to
the managed care system over the past few years.
"These
rates do not reflect how the majority of Medicaid providers are
paid," she wrote.
Stephen
Zuckerman, the lead author of the Urban Institute report, said
there's not much difference between the amounts paid by
fee-for-service and managed care, pointing to a report by the US
Government Accountability Office (PDF), a nonpartisan agency that
works for Congress, that shows only a 5% difference.
Critics of
Florida's Medicaid program also point to a report (PDF) this year by
a group led by Joan Alker, executive director of the Center for
Children and Families at Georgetown University, who's studied Florida
Medicaid for more than a decade.
The small
survey of pediatricians concluded that "challenges exist for
children enrolling in and accessing care through Florida's managed
care system" and that "barriers to getting their patients
the prescription and over-the-counter medications they needed were
also a serious concern for pediatricians."
In a letter
to the Sarasota Herald-Tribune, Dudek, then the secretary of the
state Agency for Health Care Administration, said the Georgetown
report was biased, noting that the response rate was less than 1% of
physicians participating in Medicaid.
Story
Source: The above story is based on materials provided by CNN
Note:
Materials may be edited for content and length
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