California Bill Seeks Insurance Coverage for Rare Autoimmune Disease Medication

Families of children battling a rare autoimmune disorder are pinning their hopes on a new bill proposed in Sacramento to make sure their loved ones receive the necessary treatment.

For 26-year-old Tessa Gallo, the struggle to access her medication is a part of her daily medical journey. Waiting for four long months for a shipment of vital medication is just one aspect of her 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. The process involves a painful IV hook-up followed by a grueling 12-hour infusion of the medication. On some days, it becomes too overwhelming for Tessa to bear.

“This disease is the hardest thing I’ve ever had to endure. It’s not easy for me,” Tessa said tearfully. She suffers from a rare autoimmune disorder known as PANS (Pediatric Acute Onset Neuropsychiatric Syndrome), which struck her suddenly when she was just a happy and healthy 13-year-old.

“She was a star student, athlete, and actress. Then, overnight on July 8th, 2011, Tessa dramatically changed,” recalled Downing.

PANS is characterized by a sudden and severe onset where the patient’s antibodies attack parts of their brain, leading to symptoms like OCD and ticks.

Overnight, Tessa’s behavior changed drastically, becoming psychotic and developmentally delayed. It took nearly ten months for doctors to diagnose her with PANS.

“I had to fight tooth and nail since January to get the IVIG approved. But I never imagined I’d still be fighting for the same medication 13 years later,” she said.

California Bill Seeks Insurance Coverage for Rare Autoimmune Disease Medication

Dr. Mark Pasternak, a leading researcher into PANS/PANDAS, acknowledges the high cost of treatment but emphasizes its effectiveness in preventing psychiatric hospitalizations.

Despite the positive outcomes, insurance companies often deny coverage due to the hefty price tag associated with the drugs

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Dr. Angela Tang, a proponent of the bill, believes that its passage could set a precedent for other states to follow suit. If enacted, this legislation would be a lifeline for patients like Tessa, ensuring timely access to medication when needed.

While Tessa has faced challenges due to delays in diagnosis and treatment, she is making progress with therapies, and her disease is currently in remission.