Suzette and Emily: on the radio

Much has happened since my post, “Scoliosis, Miss North Carolina and Emily.” After writing it, I wanted to do more for Emily and her family by getting the word out beyond the confines of this blog. So, I made several media calls and, a few days later, Suzette and Emily were “live” on Raleigh’s radio waves, talking about United Healthcare and its repeated denial of the claims for Emily’s Boston Brace.

Before the scheduled appearance, Suzette and I made certain that our collective Facebook friends knew about it, and WPTF contacted UH. The station offered UH’s representative an opportunity to be on the phone during the show to comment, but the company declined, citing privacy issues related to HIPAA. Suzette volunteered to fax her permission, waiving HIPAA restrictions, but UH maintained they could not comment.

During the show, Suzette did most of the talking, and she rocked! In a calm, articulate voice, she explained the circumstances that had brought the family to this point. You can hear the entire interview here: http://www.wptf.com/goout.asp?u=http://billlumaye.blogspot.com/.

Afterwards, the UH rep did a 180 on the privacy issue. According to Suzette, he emailed WPTF some “thoughts” about Emily’s case, without obtaining consent from Suzette beforehand. Basically, it was a PR-laced regurgitation of UH’s position: that the brace was not eligible for insurance reimbursement because Suzette went to an out-of-network provider to obtain it. He also reiterated that UH had referred Suzette to two in-network providers (Suzette said they only referred her to one), but failed to acknowledge that these INPs were not capable of producing the custom-made Boston Brace that Emily’s orthopedist had prescribed.

Consequently, Suzette was “angry as a fire ant!” She sent an email to the UH rep, correcting his misinformation and berating him for his company’s response – or lack thereof – up until now. To date, she has not heard anything further.

On a lighter note…
I’m happy to report that Emily has gone back to school, stylin’ and profilin’ in her new wardrobe from Peebles. Katherine (Miss North Carolina, pictured right with Emily) joined the family at the company’s Lillington, N.C. store to watch Emily model her new rags, and even let Emily wear her crown (see below).

Peebles donated a $500 gift card to Emily so she could purchase clothing that would fit over her new Boston Brace. Having first-hand knowledge of that dilemma myself, I’m thrilled for her.

I’m hoping to get some additional media coverage for Suzette and Emily soon. In the meantime, if you have any suggestions for this family, please let me know.

Scoliosis, Miss North Carolina and Emily

You gotta love Facebook. Thanks to this online community, I am now on a first-name basis with Katherine Southard, Miss North Carolina 2009 .

Turns out Katherine is a fellow scoliosis patient, and she has made a commitment to raise awareness about scoliosis and its treatment during her reign as Miss North Carolina.

Last month, during her July 4 appearance at Fort Bragg, N.C., Katherine met Emily, a 10-year-old-girl who is struggling to adjust to her new Boston Brace.

The diagnosis
Emily was diagnosed with an “S” curve (15 / 17 degrees), as well as a spinal syrinx, at age five. During the past five years, her family has played “watch and wait,” trekking from their home near Fayetteville, N.C., to UNC Hospitals in Chapel Hill, N.C., every four to six months where Emily was subjected to several MRIs under general anesthesia. Finally, on May 5, 2009, they heard the news they’d hoped to avoid. Emily’s curves had progressed to 30 degrees each, thoracic and lumbar – the magical number to warrant bracing.

If you or someone you love has ever received a fateful diagnosis, you’re familiar with the swirl of emotions that follow. Denial, fear, anger, frustration and helplessness are all present and accounted for among Emily, her parents Suzette and Michael, and her brother, Dakota (pictured above, with Emily).

Shortly after the May 5 doctor’s appointment, Emily told Suzette, “Mommy, my having this stupid scoliosis makes me feel like I am going to die.” She’s also had to give up her spot on the pitcher’s mound of her softball team, since she cannot bend or twist quickly enough to catch and grasp the ball. For his part, Dakota is angry about Emily’s scoliosis and wants an answer for the unanswerable: why? “He feels like he’s lost part of his sister because the two of them can’t play and wrestle like they used to,” Suzette said.

The health insurance
Emily’s orthopedist wrote a prescription for a Boston-style TLSO brace to be custom-made for her by Bio-Tech Prosthetics and Orthotics in Durham, N.C. However, since Bio-Tech is an out-of-network provider, Suzette said the family’s health insurance company (United Healthcare) referred her to Orthofix for Emily’s brace. According to Suzette, the Orthofix rep said he did not know why UH had referred Emily to Orthofix. “He said, ‘your daughter needs a custom-made Boston brace. Here, I have small, medium and large.’” Suzette said.

So, Suzette took Emily to Bio-Tech to fill the doctor’s prescription for a Boston Brace and filed a claim with UH. So far, the $2,282.05 claim has been denied three times. Another claim ($1,272) for treating Emily’s brace-induced sleep apnea has also been denied.

In addition to filing several appeals to UH – all of which have, to date, been denied -- Suzette, a tireless advocate for her child, also requested the physician’s reviewer notes to learn who was denying the claim and why. According to Suzette, the physician advising UH about this orthopedic-related health care decision is a plastic surgeon who has not been in active practice since 2003.

Help in the form of clothes
Since receiving her Boston Brace on June 9, Emily has gone from referring to it as “claustrophobic,” to self-consciousness about how others perceive her appearance. She wears the brace 23 hours per day, removing it only to bathe or swim. As the first day of a new school year approaches, Suzette has been scrambling to find stylish clothing that fits over the brace and will help Emily’s self-image.

During her appearance at the Ms. Statesville Pageant, Katherine told her audience about Emily, and asked for clothing donations. Afterwards, a woman from Peebles offered to provide clothes so Emily could go back to school “feeling good about herself.” Emily will receive her new wardrobe at the Peebles store in Lillington, N.C. later this month.

As a mother, I can only imagine what Suzette is going through. Dealing with your child’s scoliosis diagnosis is more than enough to handle, but having to do battle with the health insurance company – and now the mortgage company – is pushing Suzette to the end of her limits.

Health care reform cannot come soon enough for this family. So, if you have any suggestions or offers of assistance, let me know. I will gratefully pass them along.

Aug. 4, 1979

On this day, 30 years ago, I celebrated the removal of my second and final body cast with family and friends during a “coming out” party.

The cast was officially removed on July 31 and, by the time my party date arrived, I was well and truly certain that my treatment for scoliosis was over.

No more spinal surgery. No more braces and casts.

It’s ironic that I have, after a lengthy hiatus, resumed revising my memoir, Growing Pains, today. I am almost at the end of the manuscript, which is what suddenly alerted me to the significance of today’s date.

I had a great time at my party. I remember feeling that a tremendous burden had been lifted – something far heavier than the weight of my cast. I’d been set free from scoliosis. It’s a feeling I’ve never forgotten. One that still makes me smile, 30 years later.