When I met earlier this year with Tamar Friedman, her discomfort was obvious, not just in her face but in the constant motion of her hands as she gently rubbed fingers together in an effort to ease the tingling sensation in them.
“It’s so hard,” she said, when I asked what it’s like to keep up with her duties as a school social worker, wife and mother of two small children while also dealing with this ongoing pain.
But what caused even more stress as the 45-year-old Naperville woman battles a debilitating, nerve-destroying disease is the energy she’s had to exert over the past year to get help from her health insurance company.
That’s what Friedman was forced to do ever since learning just before Christmas the treatment approved by her neurologist was denied by Blue Cross Blue Shield, despite the fact the company had previously paid for a six-month trial her family insist made a world of difference in her health and her life.
The disease is not well-known, says her sister Heather Friedman, which is part of the problem. Tamar was enjoying an active life with husband Jason Dyhouse, a band teacher at Granger Middle School, and their two children, ages 4 and 8, until about 20 months ago when she began experiencing tingling in her feet that gradually turned into painful spasms traveling up her body, along with crushing headaches that led to dizziness and blurred vision.
After months of doctor visits, including a trip to Mayo Clinic, she was finally diagnosed at the University of Illinois at Chicago Medical Center with autoimmune small fiber polyneuropathy, a relatively new disorder only recently linked to antibody FGFR3, which attacks and damages small nerves in the body.
Also only recently, according to the Friedmans, a medical study showed that an extremely expensive intravenous infusion of healthy blood plasma would successfully lower the levels of antibody that were causing her symptoms.
The insurance company, they said, refused to cover the treatment at first because it was considered off-label. But after Friedman was hospitalized almost a year ago, Blue Cross agreed to a six-month trial of intravenous plasma infusions, delivered by a nurse in her home, four days at a time once a month for half a year.
The infusions were life-changing, Tamar Friedman says. As the antibody causing her disorder decreased to normal levels and her nerves regenerated, symptoms were almost completely eliminated. That’s when her doctor requested insurance coverage for a six-month continuation of the treatment at half-dose.
But Blue Cross refused the doctor’s request, and after he appealed the denial in October, Friedman received a letter from the insurance company days before Christmas informing her that appeal was also denied. Although the insurance company had paid for the initial treatment that got excellent results, Blue Cross Blue Shield claimed the intravenous plasma treatment had not been deemed medically necessary.
Repeated attempts for a response from Blue Cross Blue Shield were not successful.
“Getting the denial was awful,” said Friedman. “It is hard enough to deal with a debilitating disease … you feel so powerless. And these people are making decisions that affect my life and my kids’ lives.”
As each week passed and her symptoms worsened, Dyhouse, her husband, said he had to once more take over her household duties as his wife “just tried to get through each day.”
In early January, Friedman’s parents paid $11,000 out of their own retirement fund for a treatment which, like before, brought tremendous relief. But also like before, symptoms gradually returned.
Because the couple depends on two incomes, Friedman has no choice but to continue working at Currier Elementary School in West Chicago, which she says has been “so understanding” of her situation.
Still, at the end of the work day, “I am depleted … all I want to do is lay down and sleep.”
The family, however, chose not to lie down for the insurance company. After Friedman’s doctor submitted yet another request for coverage, the couple hired a health care advocate. Also, state Rep. Stephanie Kifowit, D-Oswego, got involved. She contacted a government liaison with Blue Cross Blue Shield about what she described as “a serious situation” and was told the insurance company would “research the case and review Friedman’s file.”
Things can fall through the cracks, which is why follow-up is so important, of course. But if you are not getting the response you feel is necessary, Kifowit insisted, call your elected officials.
“We make laws,” she said. “But what most people forget or fail to understand is that we are also here to be an advocate” for residents.
Because elected representatives have “a lot of contacts with industries and government liaisons,” Kifowit added, ”we can cut through the red tape and get it in the hands of people who need to know how to fix it.”
Some or all of the above must have made a difference in this case: A couple weeks ago Friedman said she was notified verbally that six more treatments were approved, which will give her at least 24 weeks of relief.
While there have been some cases of the disease going into remission, “no one really knows for sure what will happen because it’s so new,” Friedman said, fully aware that “we may have to go back to the drawing board and keep requesting.”
Still, Kifowit expressed optimism this medical dilemma appears to be heading toward a positive outcome.
And that’s what the Friedmans are holding on to for now.
“I certainly don’t like the process. And it’s unfortunate we have to go to such lengths,” said Tamar. “But I’m so grateful relief will be coming.”
Twitter @dencrosby
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City: Naperville,Region: DuPage,Region: Suburbs,Opinion
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March 24, 2019 at 07:03AM
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