• Parents are fighting to get insurers to cover treatments for PANS and PANDAS, disorders that cause fits of rage and developmental decline in children 
• The complex disorders often follow an infection like strep throat and are tied to autoimmune system attacks on healthy brain tissue
• Health insurers say there’s not enough clinical data to support covering a ‘gold standard’ treatment some doctor recommend for the most extreme cases

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BERKLEY, MI — In many ways, Paige Brick is just like any other 9-year-old girl. 

She’s fascinated with animals, especially reptiles like her bearded dragon, Blueberry. She plays Roblox on her iPad, collects Pokémon cards and loves reading the fantasy series “Warriors,” a sprawling epic about a group of feral cats.

But on a Monday morning, while her peers are off at school, Paige sleeps on a couch, laying next to the medication she needs to stave off the chronic infections she contracted in 2023 on a camping trip. Next to her pills — a whiteboard outlines the tasks she needs to do to start her day, which, these days, involves a rigorous schedule of occupational therapy and at-home tutoring.

“This is because her executive function doesn’t work,” her mother, Erin Brick, told Bridge Michigan. Paige needs to be reminded to brush her teeth, Brick said, and to put on socks and shoes before she can leave the house.

“She now has a learned pattern that we now have to work our way back out of because we’ve been living in medical trauma for two years.”

The condition that prompted Brick to pull her daughter from school is the same one that led the two to appear alongside two dozen other Michigan families before a legislative subcommittee in Lansing this summer.

They want state lawmakers to force Michigan health care plans to cover an intravenous drug treatment for PANS and PANDAS, two related disorders that cause children to suddenly develop obsessive compulsive disorder, along with rage, separation anxiety and loss of academic skills. 

PANS is short for pediatric acute-onset neuropsychiatric syndrome. PANDAS, or pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection, is a subset of PANS. In their most severe forms, they have had “devastating” consequences for parents and children, according to one physician who testified.

“Families that I treat describe it like they lost their kid overnight,” Dr. Susan Youngs, a Dearborn pediatrician focusing on behavioral rehabilitation, told the House Oversight Subcommittee on Child Welfare System in August. “Their brains are literally on fire.”

Strategies for diagnosing PANS/PANDAS were developed just over a decade ago, and many physicians are still unfamiliar with the conditions. That means some parents and their children are left on their own to navigate a condition with limited specialists and significant insurance barriers. 

Members of the Michigan PANS/PANDAS Alliance are lobbying the Legislature to require insurance companies to cover intravenous immunoglobulin (IVIG) treatment, which one advocate called the “gold standard treatment” for combatting the severe brain inflammation afflicting their kids. More than a dozen states already require such coverage. 

Michigan legislators have put forth bills to mandate insurance coverage since at least 2017. The latest attempt, a bill introduced by state Sen. Kevin Hertel, D-St. Clair Shores, in June, sits in the Senate’s Committee on Health Policy.  

Coverage mandate?

For milder cases of PANS/PANDAS, a simple course of antibiotics may be enough to reverse the worst symptoms. Some specialists favor immunoglobulin treatment in moderate to severe cases when antibiotics are not enough. Patients receive several rounds of infusions to strengthen their immune system.

Many parents, like Lori Corteville of East Lansing, described the difficulty in getting insurance to cover IVIG treatment.

“Our day to day experience with trying to deal with the insurance company to get the coverage has been a battle,” Corteville said, explaining that her 14-year-old son’s PANS is now in remission after receiving 10 rounds of infusions. 

“It’s been miserable. They have us jump through so many hoops and then deny.”

The state’s largest health insurer, Blue Cross Blue Shield of Michigan, said in a statement that it does not generally cover IVIG for PANS/PANDAS “due to the lack of clinical data” and that the treatment is not FDA-approved for the disorder.  

“In some instances, if all other treatment options for PANS/PANDAS have been exhausted, a member can appeal for the use of this treatment. This appeal is then reviewed by clinical staff and may be approved on a trial basis only,” BCBSM said, explaining that IVIG can be discontinued if no improvement is recorded after a three month period.  

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Other health insurers similarly cited the “experimental” nature of IVIG treatment.

“Mandating a specific treatment for everyone before proven clinical efficacy jeopardizes patient safety and reduces the flexibility to utilize other, more clinically appropriate, individualized treatment plans in the future,” said Brian Mills, spokesperson for the Michigan Association of Health Plans, in an email. “Patients can request a peer-to-peer clinical dialog between their provider and insurer over any treatment. They can also appeal an insurer provider’s decision to the state of Michigan for independent review.”

State Rep. Luke Meerman, R-Coopersville, who chairs the subcommittee that heard testimony on PANS/PANDAS, said health plans’ insistence on FDA approval for IVIG treatment “holds no water,” as other medications that lack authorization for a prescribed use can still be administered by an approving physician, in what is known as “off-label” use.

But Meerman, who said the disorders have impacted his own neighbors and members of his church, opposes forcing coverage for medical treatments in the private market.

“I wouldn’t vote for a mandate. I can’t philosophically get there,” Meerman told Bridge. “But I think we should look at Medicaid.”   

‘Suicidal’ at age 5

PANS and PANDAS are both characterized by the rapid onset of OCD and other neuropsychiatric symptoms, believed to be caused in part by the child’s autoimmune system attacking healthy brain tissue. 

The disorders can follow a bacterial infection, like strep throat, and some tick-borne illnesses or they may occur among children with higher risks of autoimmune diseases and conditions like autism spectrum disorder and ADHD.

While the cause can differ, the symptoms of PANS and PANDAS are hauntingly similar — a dramatic onset of restricted food intake, motor and vocal tics, the deterioration of sleep routines, irritability and developmental regression.

One child who testified to state lawmakers said he was “completely unable to function” after being diagnosed with PANS at 13 following a case of pneumonia, with the disorder causing debilitating OCD that forced him out of school seven months.

Other witnesses detailed how their children would pick the skin off their hands or smear feces around the home, describing harrowing episodes of self-harm in young boys, girls who rip their own hair out due to pain, and children biting and hitting those that care for them. 

“My 5-year-old, who we did not allow to watch violent cartoons and shows, became suicidal,” Cindy Groene of South Lyon told state lawmakers. “How does a 5-year-old understand not wanting to live?”

Several families explained how they left the workforce to care for their children and the financial burden to pay for their care — for many with moderate and severe PANS and PANDAS, a lack of health insurance coverage for one treatment remains the biggest hurdle to return their children back to normal. 

‘Changed overnight’

At age 7, Paige Brick’s life “changed overnight,” according to Erin Brick. Her daughter was “gripped by paranoia and severe anxiety” after living a relatively normal childhood where she enjoyed being a Girl Scout who played pretend “wolf pack” with others during recess.

After Paige recovered from a brief fever following a family camping trip, Erin Brick noticed her daughter was in a “slump” that carried over into the start of second grade.

“We started getting notes home from the social emotional learning counselor that she was having problems with friends,” Brick said. 

Brick was dismayed to see significant declines in her child’s development, with a neuropsych exam showing her daughter as “disabled.” Teachers, she said, had previously noted the girl’s aptitude and love of sciences.

Neurological and behavioral decline is common for kids with PANS and PANDAS. Studies estimate the disorders affect 1 in 11,800 kids, with the PANDAS Network reporting the condition is found in 1 in 200 children. 

While data is not available for Michigan, that could mean more than 10,000 kids.

Building awareness

PANDAS was first described in 1998 by Dr. Susan Swedo, a former chief of pediatrics and developmental neuroscience at the US National Institute of Mental Health.

The American Academy of Pediatrics only recently published its clinical report for PANS/PANDAS, saying the condition is “challenging from a clinical perspective, because it lacks disease-specific biomarkers, strong evidence for pathogenic causes, and consensus on treatment of clinical symptoms.”

That relative newness has led to a debate among doctors, according to Youngs, where some are not certain the disorders exist. 

“There’s this kind of mantra that gets passed forward, almost like a legend or a wives’ tale,” said the pediatrician, who’s the founder and medical director of Corewell Health’s Center for Exceptional Families. “There’s more and more awareness and more and more acknowledgement, but we still have a long way to go.”

The PANDAS Physicians Network has criticized the clinical report, saying it lacks recent study citations yielding a conclusion that “negatively influenced recommendations for patients with acute onset neuropsychiatric symptoms.” 

The doctors group recommends physicians perform a strep test when patients appear to have abrupt symptoms like obsessive-compulsive behaviors and restrictive eating to rule out PANS/PANDAS.

‘Urgently needed’

Advocates for those affected by the disorders remain resolute in pushing for a state mandate to cover PANS/PANDAS treatment. 

“Legislation is urgently needed because hundreds of Michigan children and young adults with PANS/PANDAS are being denied the life-saving treatments they desperately need, all because insurance companies refuse to cover them,” said Bruce Goodman, an organizer with the Michigan PANS/PANDAS Alliance. 

“Without clear laws, families face costly, exhausting battles just to access basic medical care, leaving many to either pay out of pocket, or forgo the doctor prescribed treatments.”

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