'I'm in someone else's body:' Insurance isn't covering potential cure for woman with rare disorder

Eliza Ellis

OCONOMOWOC —  Eliza Ellis should be taking her first steps into adulthood. Instead, the 19-year-old requires around-the-clock care in her Oconomowoc home.

"Always thought that right after high school, I would go to college," Ellis said. "I feel like everyone else around me is moving forward, while I'm just not."

She says she's being held captive by a rare disorder that began two years ago. It was the first time she had involuntary and repetitive movements of her body.

"Out of the blue. It's like someone flipped a switch, and it started," Ellis said.

Eliza Ellis

Her symptoms only got worse. Her family now estimates Ellis has violent tics, loss of consciousness, an OCD attack, or panic attack 50 times a day.

"Sometimes I'll just start getting really dizzy," Ellis explained. "Feel like I'm fainting, but I never lose consciousness."

It happened multiple times during Contact 6's one-hour visit to her home.

"She regresses into baby talk, and she'll walk, and she'll just fall," revealed Vicki Ellis, Eliza's mom.

Eliza Ellis

In March, Ellis was diagnosed with a disorder called Pediatric Autoimmune Neuropsychiatric  Disorder Associated with Strep or PANDAS. Doctors linked her case to an ear infection when she was 17. They say it resisted treatment, causing Ellis' immune system to attack her brain.

"It's straining on all of us, and we all need to pitch in and and help her, you know, every day," Vicki Ellis said.

Ellis' family has their heart set on an Intravenous Immunoglobulin (IVIG) treatment prescribed by her doctor. Doctors say it would flush her body with healthy antibodies.

It costs $30,000.

So far, insurance isn't covering the treatment.

"I just don't understand the denials. I don't understand it. If this is what is going to help her, why are they doing that?" Vicki Ellis wondered.

Ellis has UMR Insurance, which is part of United Health Care. United Health Care told Contact 6:

"We will continue to cover care that is medically appropriate under her plan. Our clinicians have spoken with her doctor and, based on information that was shared, Ms. Ellis does not appear to meet the criteria for this treatment based on current clinical guidelines.

She does have the right to appeal this decision, including an independent medical review, and we can provide support in helping her and her family through this process."

Dr. Miroslav Kovacevic

Dr. Miroslav Kovacevic has treated many PANDAS patients. He says insurance often rejects IVIG treatment, covering instead what he considers less-effective temporary remedies.

"You do have a treatment that has been repeatedly, not in a perfect blind study, but repeatedly clinically proven to be effective," Dr. Kovacevic explained. "It just doesn't make any sense."

Dr. Kovacevic practices in Illinois, where state law requires insurance providers cover treatment of PANDAS. Three other states have similar laws -- Minnesota, Delaware, and Arkansas. Wisconsin has no such law. A few more states have pending legislation involving PANDAS treatment. Wisconsin is not one of them.

"I feel like my freedom is getting taken away," Ellis said. "I feel like I'm in someone else's body, and it's hard."

Eliza Ellis

Ellis has her whole life ahead of her, and wants to get it back.