Idaho family fights for and wins coverage of treatment for daughter’s rare condition | Opinion

Gianna Coulter wants to be a professional soccer player someday.

For now, though, the Melba 13-year-old has to take a break from playing on the soccer team, running on the cross country team or barrel racing.

That’s because she’s suffering from a debilitating condition known as PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, a clinical diagnosis given to children who have a dramatic onset of symptoms including obsessions/compulsions or eating disorders, according to Stanford Medicine.

“About 90% of the day —” her dad, Logan Coulter, began to break down and had to stop to compose himself during a video call with me on Tuesday.

“About 90% of the day, she’s bedridden,” he continued, wiping away a tear. “When she’s in a flare, she can’t speak, she can’t walk the majority of the day. She can’t eat or consume anything.”

On top of that, despite months of pleas and three appeals, the family’s insurance provider refused to pay for the treatment Gianna’s doctor says she needs, and the family faced the potential of tens of thousands of dollars of out-of-pocket expenses.

“We have one of the nation’s top physicians in her diagnosis pleading with you to cover this treatment,” Logan wrote in a recent social media post that named the insurance company. “I’m begging you.”

On Thursday, good news came: Cigna, the Coulters’ health insurance company, agreed to cover Gianna’s treatments.

But it took a billionaire, a CEO, a couple of actors and social media posts to make it happen.

Mark Cuban shares post

By the time I interviewed Logan on Tuesday afternoon, the pressure on Cigna to approve Gianna’s treatments had already gone viral.

On Nov. 9, Logan posted a photo on LinkedIn of Gianna trying to write “mac and cheese” and “my phone,” but the words are cut off and indecipherable.

“Cigna Healthcare this is my 13 year old daughter trying to ask for Mac & Cheese and her phone today,” he wrote. “She has lost the ability to speak, talk and walk 85% of the day. She was a perfectly healthy 13 year old girl 12 months ago, and needs IVIG treatment which you have denied 3 times. ”

By Wednesday, the post had more than 1,700 reactions, 289 comments and 261 reposts.

Warris Bokhari, the CEO of Claimable, an insurance claims-management software company, shared Coulter’s post on X and tagged, among other people, famed entrepreneur Mark Cuban, who reposted it on Sunday.

“The Coulter family need your help,” Bokhari wrote. “Approve the IVIG (treatment) for this little girl. This is how much she’s deteriorated in 2 years with PANS. You have time to do the right thing.”

Logan said he received hundreds of messages from people in support and to offer help, especially after Cuban shared his post.

Since then, actors Angie Harmon, Jeremy Renner and Harold Perrinau also expressed their support on social media.

Logan said he received a text personally from Perrinau, whose daughter was diagnosed with PANS and was given the same treatment the Coulters were seeking.

On Wednesday, Logan posted a tearful video on LinkedIn updating Gianna’s condition and her inability to go to school yet again. Within 24 hours, it had more than 500 reactions, 115 comments and 155 reposts.

PANS diagnosis

Gianna was diagnosed with PANS, an autoimmune disorder that causes depression, irritability and anxiety, and children with PANS may have difficulty with schoolwork, as the body’s immune system attacks healthy brain tissue. The cause of PANS is unknown in most cases but it’s thought to be triggered by infections and other inflammatory reactions, according to Stanford Medicine.

In Gianna’s case, the family and their doctor are pretty sure what triggered it: toxic mold.

Logan said the family started having health issues last year, and a local doctor diagnosed one of Gianna’s brothers with mold intoxication.

Sure enough, the Coulters found toxic mold in their attic.

Once they fixed the problem, the family got better.

Everyone except Gianna, who also has an autoimmune disorder called Hashimoto’s thyroiditis, in which the immune system attacks the thyroid, causing inflammation.

Gianna began developing other symptoms and progressively got worse.

“She started getting really, really sick with this, and couldn’t sleep at night and had some odd symptoms,” Logan said. “It started creating issues where she couldn’t fall asleep, and then bits of screaming and rage at night, and we couldn’t pinpoint it.”

Finally, their local doctor said he suspected she had PANS and recommended they see a specialist.

The family took her to Dr. Scott Antoine, of Carmel, Indiana, who has written a book about PANS and the related PANDAS, a similar condition triggered by strep.

He confirmed the diagnosis about a year ago and recommended preliminary treatment, including antibiotics, steroids and probiotics.

IVIG treatment

Despite that treatment over the next six months, Gianna’s condition worsened, and Antoine recommended a more aggressive treatment called intravenous immunoglobulin, or IVIG, which is a medical treatment that involves the infusion of antibodies collected from the plasma of healthy donors.

Cigna, the Coulters’ health insurance provider, denied the initial claim, with a panel of nurses determining that IVIG is “experimental,” according to Logan.

Meanwhile, Gianna’s condition got worse.

The Coulters appealed the claim denial.

Cigna again denied the claim, this time after a review by a doctor, an allergist with no experience with PANS, according to Logan.

Gianna kept getting worse, Logan said.

Antoine conducted a peer review with a Cigna doctor, but the claim was again denied.

“Which left us with zero answers, nowhere to go with Gianna,” Logan said.

That’s when the family decided to start paying for the IVIG treatments themselves out of their own pocket.

Gianna started IVIG treatment last week.

Logan said he regrets wasting so much time waiting for Cigna.

“It just feels like it didn’t have to come to this,” Logan said. “I feel like, as a father, I waited way too long for insurance to give us a response, kicking myself that we just didn’t pay out of pocket six months ago, but we definitely didn’t know how fast this would progress. So now we waited, and now we’re in a battle to try to recover everything that we lost.”

And treatments aren’t cheap.

Logan said it costs $15,000 for one treatment that’s required every three to four weeks.

He said Gianna responded well to the first treatment. It could take a couple of months of treatments or it could take up to two years.

Each treatment involves eight hours of being on an IV over two days and two hours of a transfusion of human plasma.

“Every three to four weeks, it’ll be $15,000 out of pocket, which, whatever, if that’s what we have to do now, we’ll do it, and we’ll have to just dive into whatever savings we have, 401(k) and college funds, and like I –” Logan stopped himself again and began to tear up. “So, I mean, we’re going to do it.”

He estimated if Gianna goes through two years of IVIG, the treatments would cost around $175,000 if Cigna didn’t reconsider.

“It will exhaust everything that I’ve saved since I was 20 years old until now,” Logan said Tuesday, before learning that Cigna agreed to cover the treatment. “I’ve been paying health insurance my entire life. So you hit a moment where you need it the most, and it’s in the absolute moment where you need it the most, then it’s not there. That’s the frustrating part.”

As a father myself, it’s hard not to empathize with Logan. There is perhaps no worse feeling than helplessness when your child is sick. On top of that came the frustration of being at the mercy of an insurance company that seemed to be deaf to their plight.

“We know it is difficult for families to hear that an initial request for a service is not approved,” an email from a Cigna spokesperson said. “That is why we and our board-certified physicians take every possible step to carefully assess authorization requests against the latest clinical guidelines and approve appropriate care quickly. Although we can’t discuss any individual case, we do have an appeals process for physicians and families, which includes an independent review by external physicians, even for requests involving medications not approved by the FDA for the patient’s condition.”

Acceptance of IVIG treatment

In denying the claim initially, Cigna said IVIG is an “experimental treatment.”

“That’s bulls---, if I can just be blunt,” said Diana Pohlman, executive director of PANDAS Network, an organization that advocates for improving the diagnosis, treatment and coverage of children with PANS and PANDAS.

I spoke by phone with Pohlman, who had two children with PANDAS 15 years ago and used IVIG treatment successfully. Her children are now 20 and 24.

IVIG has been recognized by the National Institutes of Mental Health as an acceptable treatment, noting that it should be used only in severe or acute cases.

Logan points to studies in 2017 and 2024 that show the efficacy of IVIG in treating PANS and PANDAS.

Antoine, in appealing the denial, cites several other studies, including one going back to 1999 that showed “striking improvements” in symptoms of those who went through IVIG treatment.

Pohlman said a new five-year, $10 million study from the National Institute of Mental Health, Yale and Columbia universities and the University of Oklahoma is scheduled to be published soon.

A handful of states have passed legislation requiring insurance coverage of PANDAS, including Arkansas, Delaware, Illinois, Indiana, Maryland, Minnesota, New Hampshire and Oregon, according to the PANDAS Network. California just passed a law that takes effect in January mandating IVIG coverage for PANS and PANDAS.

“The insurance companies are playing games with the research,” Pohlman said. “I just think that they just have decided to take this one rare disease as problematic.”

Pohlman noted that IVIG has been used to treat other conditions, such as juvenile rheumatoid arthritis.

“Good doctors are giving IVIG all around the United States, but there’s pushback,” Pohlman said. “Children don’t die from using IVIG. It doesn’t create brain damage. It just goes through the immune system and calms things down. I don’t know what they’re afraid of, really.”

She thinks money might have something to do with it.

“If IVIG cost a thousand bucks to give to a kid,” she said, “they would all try it right away.”

A family in Tennessee in April finally won approval of coverage for IVIG from BlueCross BlueShield for their son who had PANDAS, after WSMV-TV produced a story about it and after four appeals.

Fortunately for the Coulters, Cigna did the right thing here, but no one should go through the anguish they endured.

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