Michigan Parents Battle Insurance Company Over Son’s IV Treatment

Brian and Michelle Stackpoole are taking on Blue Cross/Blue Shield of Michigan, but the Grosse Pointe Park couple is facing an uphill battle.

Their son Jack has been diagnosed with a brain condition known as PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome. The disease caused the nine-year-old to develop tics, an aversion to eating, and he began picking at his skin until it bled.

The Stackpooles say Jack saw almost immediate relief after beginning a monthly - and costly - treatment known as IVIG, or Intravenous Immunoglobulin. But that relief was only temporary because their insurance company, Blue Cross/Blue Shield of Michigan, has since denied coverage.

Jack Stackpoole's Story

In an interview with Townsquare Media, Michelle Stackpoole says that her son was diagnosed with autism at age three. He suffered a mild concussion when he fell headfirst into a bench at school on his fourth birthday.

"That fall was like a switch that immediately turned on an aversion to foods and smells," she said. "That was our first clue that something wasn’t quite right."

Jack suffered more setbacks after he contracted COVID-19. He developed tics and began picking at the skin on his arms and legs, often drawing blood.

A pediatric neurologist at Henry Ford Health System diagnosed Jack with Pediatric Acute-onset Neuropsychiatric Syndrome or PANS.

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IV Treatment Brings Immediate Relief

Jack was prescribed monthly Intravenous Immunoglobulin (IVIG) therapy. Stackpoole says they noticed an immediate improvement.

"After the first round of IVIG, we noticed sharper focus in school, better socialization, his pupils were no longer dilated, he started eating other foods again, and being less nervous about being exposed to smells, and overall just seemed happier and more balanced," she said.

However, after 18 months, the Stackpooles' insurance company stopped authorizing payment for the therapy, which can cost up to $30,000 per treatment.

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Doctors at Henry Ford tried to arrange for outpatient treatments which were approximately $20,000, but so far Blue Cross has been unwilling to budge. The company said there is a lack of clinical evidence that IVIG treatment is effective in treating PANS.

Stackpoole says that after a few months without the treatment, Jack began to regress and his symptoms returned.

An Ongoing Insurance Battle

The boy's mother says her family is currently in a holding pattern with Blue Cross.

"Our doctor continues to submit claims for Jack to receive the infusions either as inpatient or outpatient care," she said. "Once it is denied, the doctor continues working through the appeal process."

Stackpoole says she has submitted documentation from Jack's teachers, principal, and a neuro researcher at Wayne State who has been following their case, all of whom have seen the benefits of IVIG treatments for Jack.

She is now working with State Senator Kevin Hertel and State Representative Kelly Breen who are crafting legislation that would force Blue Cross/Blue Shield of Michigan to authorize IVIS treatment for PANS and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated), another rare neurological affliction in children.

The Economic Alliance for Michigan tells the Detroit News (paywalled article) that such a mandate would drive up the cost of healthcare.

A Petition for Change

As the Stackpooles have reached the end of the appeal process with Blue Cross/Blue Shield, they have developed an online petition to persuade the Blues to cover IVIG treatment for PANS and PANDAS. At least 11 other states require insurance companies to do so and Mrs. Stackpoole says her son's future is dependent on it.

"I don’t think the petition will make much difference with Blue Cross, nor do I think they care about their image with their clients," she said. "However, my hope is that the local legislators I’m working with will use the petition to gain the support of other legislators to work towards a state mandate of IVIG in Michigan."

She says Jack sometimes asks why he has autism and often asks when he will be able to start getting treatments again to make his brain feel better.