CHARLOTTE, NC (FOX 46) - Two moms are getting results after they reached out to their state senators. Now, the ball is rolling to bring awareness and even possibly create legislation to cover their children's disease which starts with strep throat.
It costs 10 thousand dollars every time Josie Andrews gets her IVIG treatment.
Her parents pay for it out of pocket. It's not covered by insurance.
Her mom - Traci Andrews - took action, contacted her state Senator Dan Bishop, and got more than 70 neighbors and friends to do the same.
"Senator Bishop's assistant called me and told me, 'you've got our attention'. That was exactly the plan to let him know this is really important,” said Andrews.
She says her daughter needs intravenous immunoglobulin therapy every 3 to 4 months to keep her symptoms in check. Her daughter was diagnosed with PANDAS - a pediatric autoimmune neuropsychiatric disorder associated with strep throat.
Janice Schafer also has a child with PANDAS. She also got results after reaching out to her state Senator Jeff Tarte.
"We met with Senator Tarte up in Davidson one Saturday morning. He really got interested when we told him the numbers. When we told him that it was one in two-hundred kids were impacted by PANS and PANDAS,” said Schafer.
The two moms want the senators to set up a state advisory council which is essentially a group of law makers, doctors, and educators to study and create awareness around the PANDAS disease.
"Doctors need to know about this. Doctors need to test for it. Schools need to know about it and provide services to these kids."
State Senator Jeff Tarte says he's on board and will start the process of getting the disease covered by insurance.
“It's common enough that it applies to the broader population and it can have a health benefit for the whole state. If we're catching these things early, these are things that take down the cost of healthcare for everyone in the state indirectly,” said Tarte.
But he and Senator Dan Bishop say it could take years to actually pass the law.
That's why Senator Bishop says he's working to get more immediate results for Traci and her daughter.
"I think she's doing the right thing by advocating fiercely and conversations continue to be had. I have a pending communication out to the treasurer or North Carolina who has the supervisory responsibility for the health plan. We'll see where it goes," said Bishop.
Working to get results for kids with PANDAS.