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Insurers won’t pay for a Hampstead child to get treatment for a rare syndrome. A Maryland bill could force them to.

In 2017, 4-year-old Jackson Mattoon of Hampstead could not have been more excited to start preschool, according to his mother Molly.

“He was one of those kids that just wanted to be around kids so bad,” she said. “The first day of preschool, we dropped him off and he ran in and didn’t even look back.”


And then one day, Molly got a call from Jackson’s teacher. He was inconsolable. They had never seen anything like it. She rushed to the preschool and found him close to throwing up and with a purple rash on his face, though he calmed down once he saw Molly.

Jackson Mattoon, a Hampstead 6-year-old, suffers from PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, which results in symptoms akin to obsessive compulsive disorder but can be mitigated by courses of antibiotics.

“Then for weeks after that, he would start every morning, ‘I want to go to school,’ he would get his backpack on, he’d get dressed, we get in the car," Molly said. "But on the drive to school every day, you could see the fear building. And then by the time we were in the parking lot, he was having panic attacks and couldn’t go in.”


At the same time, Jackson began developing a shoulder tic, and would rhythmically scratch his face at night until it bled, symptoms akin to obsessive compulsive disorder that Molly had no experience with.

Then Jackson got a sinus infection — and antibiotics. Those were covered by health insurance, but later treatments, as his condition became more complicated, would grow more and more expensive — as their insurers backed away.

With the antibiotics, “The tics went away. And he went back to school, all of a sudden, he just started going back to school again. It was like the separation anxiety was gone,” Molly said. “I was like, OK, I guess we got through a weird phase.”

But eventually it became clear this was not a phase, as the symptoms would periodically return, especially if he had another strep infection — growing worse so that Jackson was also refusing to eat almost entirely — but were mitigated by courses of antibiotics.

That’s when a friend told Molly about PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

And now, she’s taken to the Maryland General Assembly in a bid for relief.


PANDAS, which was first characterized in the late 1980s, describes the onset of the types of behavioral symptoms Jackson exhibited after a strep bacteria infection, according to Dr. Earl Harley, an ear, nose, and throat doctor and surgeon at Georgetown University who has been treating PANDAS cases for years.

“Strep bacteria, group A, has an affinity for the tonsils, so it was a natural to look to an ENT doctor for something that originated in the tonsils,” he said. “As a surgeon who could do tonsillectomy and hopefully mitigate the symptoms or cure it in the best-case scenario, that’s how I got started.”


The theory behind PANDAS, Harley said, is that in some children, infection with certain strep bacteria — a subset of the group A streptococcus— can cause immune cells in the tonsils to produce problematic antibody proteins. Instead of attacking invading pathogens, these antibodies cross into the brain and begin attacking portions of the brain that then lead to the behavioral symptoms Jackson began to exhibit.

“The antibodies are called auto-antibodies, so the body produces antibodies that attack itself,” Harley said, noting PANDAS fits into a broader category of neurological disorders. “The broader term being autoimmune encephalitis, that is, an inflammation of the brain.”

Mainline therapy for PANDAS would then be antibiotics to treat the infection, Harley said, a long course similar to the treatment of rheumatic fever, which is also caused by group A streptococcus. He has also performed tonsillectomies to help mitigate future strep infections with some success.

But for patients like Jackson who have had repeated exposures to strep, Harley said, further treatments might be necessary to clear out the auto-antibodies, such as intravenously administered immunoglobulin, or IVIG, which is a product extracted from donated blood.

“It counteracts the auto-antibodies that are in the system,” Harley said.

But those treatments are not entirely accepted by the medical establishment. In fact, Harley said, there remains a lot of skepticism around PANDAS.


“It remains controversial to the point where some people don’t believe it even exists, and that’s where there’s trouble,” he said. “We do have trouble with insurance paying for the treatment."

Finding coverage

Molly has seen this first-hand with Jackson. Along with his self-restricting food, he began to refuse to take any oral medication. It would become a drag-out, hands-on battle to even get antibiotics in his mouth, Molly said, “and when we do get it him, he throws it up anyway.”

So one of Jackson’s doctors prescribed antibiotics that they could inject intramuscularly, Molly said, but her insurance company at the time, UMR, a United HealthCare company, denied it.

“They denied it three times saying it was not medically necessary,” she said. “One letter that UMR sent me said 6-year-olds should be able to take medicine orally. Well, no s---.”

Virtually all of Jackson’s PANDAS-related care has been paid for out of pocket, Molly said, from the $700 to $1,200 per doctor’s visit to the $10,000 IVIG infusions Jackson finally began to receive in February, more than two years after his symptoms started.

“If insurance hears the word ‘PANDAS,’ it’s an automatic denial,” she said.


To testify

On Feb. 6, Molly went to the State House in Annapolis to try to do something about that, testifying in favor of House Bill 447, which would require health insurers in Maryland to cover PANDAS-related care.

Del. Alfred Carr, a Montgomery County Democrat, is the bill’s primary sponsor.

“This is an issue I’ve been working on a number of years,” he said. “Constituents approached me to let me know that there is someone diagnosed with PANDAS and all the difficulties they’ve faced in not only dealing with the illness, but getting coverage from insurance.”

Bills over the previous two General Assembly sessions raised awareness of PANDAS, Carr said, and over the summer of 2019, the Maryland Insurance Administration, or MIA, held a series of meetings on the topic of PANDAS coverage.

“The bill is seeking to implement the recommendations of the MIA work group on the topic of PANDAS,” he said. “It’s basically a way to try and improve the coverage so that families will not face so many hardships when they are seeking to get treatment.”

At the same time, Carr admitted PANDAS is still a controversial subject.


“There are some doctors that don’t agree on it, on how to diagnosis or what the treatment is, and there are others that are convinced,” he said. “The insurer carriers don’t agree either. For example, CareFirst has decided to cover the treatment for PANDAS, even without the legislature telling them they have to do that.”

An uncertain state

Just at a logistics level, getting insurance coverage for PANDAS can be difficult, according to Harley. For starters, PANDAS has no diagnosis code, which is needed for billing insurance.

“There is a system of diagnosis codes called the ICD-10. Each diagnosis — arthritis, headache, whatever — has a code, has a numerical code,” he said. “Well, PANDAS doesn’t really have one. We use a code called D89.9, which kind of covers PANDAS, but until a few years ago we didn’t even have that.”

And then there is the fact that despite clinicians like Harley who treat PANDAS, a lot of the clinical research into treatments remains inconclusive. A 2018 systematic review in the journal Neuroscience & Biobehavioral Reviews examined 12 studies on PANDAS treatments, finding mixed results for treatments ranging from antibiotics to IVIG to tonsillectomies, and concluded evidence for any of these interventions was inconclusive and required further study.

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In the 2018 edition of its Red Book, a guide to pediatric infectious diseases for clinicians, the American Academy of Pediatrics concludes there was insufficient evidence to recommend antibiotics or IVIG for PANDAS, and instead suggested referring affected children to psychiatrists and neurologists specializing in treating behavioral disorders such as obsessive compulsive disorder.

“We have a major organization that speaks for pediatricians who look after the health of kids really dismiss the diagnosis, then the insurance companies will say, ‘The AAP says this, why should we pay and cover the costs when the pediatricians are really dismissing it as a significant disorder?’ ” Harley said. “Until we have the AAP behind us, it’s going to be tough.”


Taking and making measures

It’s not clear what chances Del. Carr’s bill has of becoming law, but he said that if it should emerge from committee, and its counterpart in the Maryland Senate should do the same, there is a good chance an omnibus bill will make it to the governor’s desk.

“We will find out in the coming next couple of weeks whether these bills are going to move forward or not,” he said.

In the meantime, Molly will do what she believes needs to be done now to help Jackson now.

Now 6 years old, he began IVIG infusion treatment on Friday, Feb. 28, enduring hours sitting still in an infusion clinic. As Molly submitted in her written testimony to the Maryland House, the relief provided by legislation mandating insurance coverage would be significant, but she will not be waiting to get her son treatment in the meantime.

“We will borrow against our home, or even sell the house if we have to,” she wrote. “There is no price anyone can put on my son’s life.”