Insurance Coverage for Rare Autoimmune Medications on the Horizon With New Bill

Families of children with a rare autoimmune condition are hoping that new legislation in Sacramento will help their loved ones obtain the care they require.

Waiting four months for a pharmaceutical shipment is only one component of Tessa Gallo’s medical journey. “This is the magical IVIG. This is what we have been waiting for. “They finally flew it in last night,” Tessa’s mother, Terry Downing, explained.

There’s the excruciating IV hook-up, followed by the 12-hour infusion. And on this particular day, it became too much. “This is the most difficult disease I have ever faced. “It is not easy for me,” Gallo remarked through tears.

She has an autoimmune condition called PANS, or Pediatric Acute Onset Neuropsychiatric Syndrome. It struck her one day while she was a happy, healthy 13-year-old.

“She attended St. John Vianney School.” She was a star track athlete, and a Girl Scout, and played the lead in her school play. Then, overnight on July 8, 2011, Tessa altered radically,” Downing recalled. The disease manifests as a sudden, devastating start when a patient’s antibodies assault the areas of their brain that regulate behavior, resulting in OCD, ticks, and other symptoms.

“She went from psychotic to developmentally retarded overnight. I felt something was wrong, but it took them almost 10 months to realize it wasn’t bipolar or schizophrenia. “It was called PANS,” Downing explained.

Downing stated that Tessa was in and out of psychiatric institutions and was given numerous medications for what physicians believed to be mental illness. That is until a new group of physicians at Lucille Packard Children’s Hospital suspected PANS.

“They created a clinic after her and began treating her with IVIG and rituximab, both of which are extremely expensive medications. But Tessa’s been on them for nearly ten years,” Downing remarked.

The treatments alleviate Tessa’s symptoms and cause substantial, beneficial changes in many other people with PANS and a related disorder known as PANDAS, which begins with a strep infection.

Tessa takes her medication once every three months. However, Downing explained that getting insurance companies to fund the medications has been a battle since the beginning. “I had to wait and fight since January to get the IVIG approved,” she went on to say. “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 top PANS/PANDAS researchers.

According to Dr. Pasternak, the medical establishment as a whole knows very little about the condition. Patients are frequently denied coverage, with medicine costs being a significant concern.

“For teenagers, it’s probably around $15,000 for each therapy. However, given that they avoid psychiatric hospitalizations, they are cost-effective. But insurance firms don’t see it. “They just see their $15,000 and get upset,” he said.

11 states have approved legislation requiring insurers to cover PANS/PANDAS. California could be next. “California is working with a core group of parents to get AB2105,” stated Dr. Angela Tang, mother of a PANDAS patient.

She said that the California measure would oblige insurance companies to fund doctor-prescribed therapies, such as IVIG and other medications. “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 went on to say.

If implemented, the measure would allow people like Tessa to receive treatment 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,” she added.

Despite having suffered significant brain damage as a result of her earlier diagnostic and treatment delays, Tessa is enrolled in the College of Adaptive Arts and works part-time at a bakery.

Doctors claim her medicines are effective, and the disease is currently in remission.