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A new bill could require insurance to cover medications for rare autoimmune diseases

Families of children with a rare autoimmune disease hope new legislation in Sacramento will help their loved ones get the treatment they need.

For 26-year-old Tessa Gallo, waiting four months for a shipment of medicine is just part of her medical ordeal.

“This is the magical IVIG. This is what we’ve been waiting for. They finally flew it in last night,” said Tessa’s mother, Terry Downing.

There’s the painful IV connection and then the 12 hours it takes for the medication to infuse. And on this day it all became too much.

“This is the toughest illness I have ever experienced. It is not easy for me,” Gallo said through tears.

She suffers from an autoimmune disease called PANS or Pediatric Acute Onset Neuropsychiatric Syndrome. It struck her one day when she was a happy, healthy 13-year-old.

“She was a student at St. John Vianney School. She was a star athlete, was in Girl Scouts and had the lead role in her school play. Then on July 8, 2011, Tessa changed dramatically,” Downing recalled.

The disease is characterized by a sudden, devastating onset when a patient’s antibodies attack the parts of the brain that regulate behavior, causing OCD, ticks and other symptoms.

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“Overnight she became psychotic and had developmental delays. I knew something was wrong, but unfortunately it took about ten months for them to figure out that it wasn’t bipolar disorder or schizophrenia. It was something called PANS was called,” Downing said.

Downing said Tessa went in and out of psychiatric wards and was given many medications for what doctors thought was a mental illness. That is until a new team of doctors at Lucille Packard Children’s Hospital suspected PANS.

“They started a clinic after her and started giving her something called IVIG and rituximab, both very expensive medications. But Tessa has been on them for almost a decade,” Downing said.

The drugs relieve Tessa’s symptoms and produce dramatic, positive changes in many other patients with PANS and a related condition called PANDAS, which starts as a streptococcal infection.

Tessa takes the medicine once every three months. But Downing explained that it has been a struggle from day one to get the drugs covered by insurance companies.

“I have had to wait and fight since January to get the IVIG approved,” she said. “But never in a million years did I think I would be fighting for the same medicine thirteen years later.”

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“The treatment is not cheap, I’m the first to say that,” said Dr. Mark Pasternak, an associate professor of pediatrics at Harvard University. He is one of the country’s leading researchers in the field of PANS/PANDAS.

Dr. Pasternak said there is a lot the broader medical community doesn’t know about the disease. Patients are often not offered coverage, with drug costs being an important factor.

“For teenagers, it’s probably $15,000 per treatment. But given that they prevent psychiatric hospitalizations, they are cost-effective. But the insurance companies don’t see that. They just see their $15,000 and get confused,” he said.

Eleven states have passed legislation requiring insurance companies to cover PANS/PANDAS. California could be next.

“California is working with a core group of parents to pass AB2105,” said Dr. Angela Tang, who is also the mother of a PANDAS patient.

She said California law requires insurance companies to cover treatments prescribed by doctors, including IVIG and other medications.

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“If Governor Newsom signs this law, we will be a role model and a very large domino to get the other 38 states without protections to follow suit,” said Dr. Tongs.

If the legislation passes, patients like Tessa could get medicine when they need it.

“When I’m waiting for the medicine, I feel upset, a little sad that it didn’t come and things like that,” Tessa said.

Although she has suffered some brain damage due to her previous misdiagnosis and delays in treatment, Tessa enrolls in the College of Adaptive Arts and works part-time at a bakery.

Doctors say her therapies are working and the disease is in remission for now.

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