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New bill could require insurance to cover medication for rare autoimmune disease

Medication for rare disease would be covered by insurance if California passes new bill
Medication for rare disease would be covered by insurance if California passes new bill 04:32

Families of children with a rare autoimmune disorder are hoping 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 medication is just part of her medical ordeal.

"This is the magic 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 hook-up, and then the 12 hours it takes to get the medication infused. And on this day, it all became too much.

"This is the hardest disease I've ever been through. It's not easy for me," Gallo said through tears.

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

"She was a student at St. John Vianney School. She was a star track athlete, was in Girl Scouts and had the lead in her school play. Then overnight on July 8th, 2011, Tessa dramatically changed," Downing remembered.

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

"Overnight she became psychotic and developmentally delayed. I knew something was wrong but unfortunately it took about ten months for them to figure out it was not bipolar or schizophrenia. It was something called PANS," Downing said.

Downing said Tessa was in and out of psych wards and given many drugs for what doctors thought was 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 drugs. But Tessa's been on them for close to ten years," Downing said.

The drugs ease Tessa's symptoms and make dramatic, positive changes in many other patients with PANS and a related condition called PANDAS, which starts as a strep infection.

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

"I had to wait and fight since January to get the IVIG approved," she said. "But never in a million years did I think that 13 years later I would be fighting for the same medication."

"The treatment is not inexpensive, I'm the first to say that," said Dr. Mark Pasternak, an associate professor of pediatrics at Harvard University. He is one of the nation's leading researchers into PANS/PANDAS.

Dr. Pasternak said there's a lot the wider medical community doesn't know about the disease. Patients are often denied coverage with drug costs being a major factor.

"For teenagers, it's probably a $15,000 a treatment. But given that they prevent psychiatric hospitalizations, they're cost effective. But the insurance companies don't see that. They just see their $15,000 and they get flustered," he said.

11 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 get AB2105," said Dr. Angela Tang, who is also the mother of a PANDAS patient. 

She said the California bill would require insurance companies to cover doctor-prescribed treatments, which could include IVIG and other drugs.

"If Governor Newsom will sign this law, we will be a role model and a very large domino in getting the other 38 states without protections to follow suit," Dr. Tang said.

If passed, the legislation would help patients like Tessa get medicine when they need it.

"When I'm waiting for the medicine, I feel upset, kind of sad that it didn't come and stuff like that," Tessa said.

Although she suffered some brain damage because of her earlier misdiagnosis and treatment delays, Tessa's enrolled in the College of Adaptive Arts and works part time in a bakery.

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

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