Marblehead mom urges lawmakers to support PANDAS/PANS bill

Jul. 31--Tiffany Uttam's son was a typical 9-year-old, bright, happy, a good student with good friends, and then he wasn't.

Uttam, the director at Fairwind Learning Center, and her husband watched as their son, Miles, now 13, rapidly became ill, developing both verbal and physical tics, paranoia, and severe anxiety.

"His handwriting changed," Uttam said.

After a series of misdiagnoses and some doctors who flat out said they had no idea how to treat her son, Miles was diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome or PANDAS.

That was the good news.

The bad news was finding a treatment.

Sitting down with the Reporter, Uttam scrolls through a multi-page list of over 100 medications that represent their first year grappling with the illness that is the result of an infection gone undiagnosed.

According to the National Institute of Mental Health, PANDAS, a subset of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) can result from a strep infection that resists treatment and persists long enough to infiltrate the brain. In an effort to rid the body of the infection, the immune system can attack the brain.

Caught early, PANDAS can often be treated with antibiotics, Uttam said. But in Miles' case, she suspects he had undiagnosed strep for several years that caused his streptides to multiply off the charts, triggering the PANDAS. Because the illness presents with what are largely neuropsychiatric symptoms, such as OCD, sleep disturbance, aggression and sensory sensitivity to name a few, the drugs initially given to Miles were all psychiatric based.

"Which is very typical and actually makes it worse," Uttam said.

Eventually, through research and a lot of luck, Uttam found two doctors who would change Miles' world, pediatric rheumatologist Dr. Yujuan Zhang and Chief of Pediatric Neurology Dr. John Gaitanis, both of Tufts Medical Center. And she found a treatment, Intravenous Immunoglobulin therapy, also called IVIG, but to her shock it was not covered by insurance and has cost her family nearly $40,000 out-of-pocket for two treatments.

That is what brought Uttam and other families to the State House recently to testify before the Joint Committee on Financial Services. Uttam, who hadn't planned to testify, told her story to support a bill that would require insurers to cover treatment for children like her son.

She counts herself lucky in that with her family's help, they have been able to pay for her son's treatment. But Uttam learned that is not the case for everyone, like the grandmother she met who has drained her retirement account and mortgaged her house to pay for her 8-year-old granddaughter's treatment.

Rep. Paul Brodeur, of Melrose, who sponsored the bill, spoke during the hearing about Massachusetts' history of accessible health care.

"We really do need to take the next step because what we've found in the care or treatment of patients with PANDAS or PANS is that the level of treatment you can get or the adequacy of treatment you have access to depends on your ability to pay," Brodeur said. "And that is not something that we stand for in Massachusetts and needs to change in this case."

One might think, because PANDAS/PANS strikes children, passing the bill would be a slam dunk, but Uttam said it's failed twice in Massachusetts already. It has, however, passed in five other states, including New Hampshire, where Gov. Chris Sununu signed it into law just last week.

Uttam said she fears lawmakers are hesitant to pass the bill because they believe it will add $5 million to healthcare costs over five years, but that isn't true. That number is based on the idea that every child suffering from PANDAS/PANS needs IVIG, when in fact it's a very small percentage, she said.

Uttam said it's frustrating to her because "I've seen the miracles this drug can do," and money should not be a barrier to good health.

Uttam said weeks after her son received his first treatment, he was himself again. Gone were the tics and the fears. He went back to school, joined the ski team and lived a typical pre-teen life. Then came the relapse and the need for another treatment.

Both Zhang and Gaitanis have written letters supporting the bill. Uttam said one would think that would add some weight to their fight.

"It's just absurd," she said. "We're the lucky ones. We can give our child hope. You need to be able to give your child hope and the people who can't afford IVIG, they can't give their kids hope."

Uttam said she believes they have until February to lobby lawmakers to act on the bill and not let it die in committee.

State House News Service contributed to this story

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