Denied: A Rare Healthcare Insurance Battle
November 14, 2016
Nikki Batsford, who is 33 and in grave condition from hydrocephalus, had been fighting for five months to get insurance coverage for possibly life-saving treatment.
The answer was no.
Finally, she reached out to The Providence Journal, which ran a column about her plight.
A week later, the answer was yes.
A few days ago, she sent me an email saying that UnitedHealthcare had changed its mind.
I’d met Nikki and her mom, Jan, two weeks ago at their small Johnston home. Jan, a 62-year-old nurse, told me her daughter had been struggling since childhood with syndromes causing excess fluid on her brain.
Despite it, Nikki had been 2001 valedictorian at Smithfield High School.
Often, hydrocephalus can be controlled, but some cases are complex, like Nikki’s. She is also battling Chiari malformation, which required surgery to cut back the base of her skull to relieve pressure.
Her condition has left her increasingly debilitated, with blurred vision, headaches and tremors. Lately, Nikki had told me, it had worsened, with trouble breathing and swallowing.
After going through dozens of doctors over the decades, she recently turned to the Maryland-based Hydrocephalus Association, which pointed her toward Dr. Mark Luciano of Johns Hopkins as the most promising expert for her case.
But UnitedHealthcare had denied treatment with him as out-of-network.
Nikki felt the denial was unfair, since her case had been reviewed by a UnitedHealth orthopedic surgeon instead of a more expert neurosurgeon.
I wrote a story about Nikki’s dilemma, saying I understand health insurers can’t say yes to everything, but they often deny from afar based on paperwork, and when I looked into the case personally, it seemed clear she needed greater expertise: Very few doctors focus only on hydrocephalus.
As Dr. Luciano of Johns Hopkins told me: “Hydrocephalus has been a subcategory that surgeons treat but few if anyone has made a specialty of it. We’re trying to make it a new discipline.”
He’s now the director of the Johns Hopkins Cerebral Fluid Center, which is almost unique in its focus, and is why he was recommended.
Talking to Nikki showed me it wasn’t the newspaper alone that got UnitedHealthcare to change its mind but the attention articles can trigger.
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