‘It is a long-term disease’: Summit HS student hopes Congress will require insurers to cover pediatric auto immune disease

(Update: Adding video, comments from the Lord family)

State lawmakers just enacted similar legislation

BEND, Ore. (KTVZ) -- A Bend high school student is working to make big changes when it comes to health care. 

Kirk Lord is going into his senior year at Summit High School. He's working to get  a national bill approved requiring insurance coverage for an auto-immune disease known as PANDAS.

"I talked with my parents at the beginning of the year, and I was like, 'I really want to have a big impact on the world and start doing good things,'" Lord said Friday.

 He was diagnosed with pediatric autoimmune neuropsychiatric disorder in 2010. It's associated with strep infections and also known as PANDAS.

Kirk's mother, Tricia Lord, said, "If you looked at photos of him his eyes were gray, his skin was gray -- he just looked sick." 

He was able to get intravenous immunoglobulin therapy, also known as IVIG therapy, to help with his symptoms such as tics, OCD and anxiety. 

Kirk's father, Duncan Lord, said, "It is a long-term disease, like -- this is a journey for families and kids. So it's it's not like you snap your fingers and you're done. You know, symptoms improve can improve drastically, is what we saw in it. Later on, he needed another round of that (therapy)."

IVIG can help strengthen the immune system so you can fight infections. But the average cost of an infusion is more than $9,000.

Recently, the Oregon State Legislature passed Senate Bill 628. It requires health benefit plans and health care service contractors to cover treatment for PANDAS, and will take effect next year. 

Kirk wants to take it a step further and create a national bill to require insurance coverage for kids who need IVIG therapy. 

"There's like hundreds of thousands of kids across the united states with PANDAS who can't get the treatment because it's just, they just don't get insurance coverage," he said.

He said he is currently in touch with an assistant to Senator Ron Wyden.

And Kirk has a history of making a difference. 

When he was younger, he raised $6,000 for PANDAS research by crossing the Golden Gate Bridge on a pogo stick, without stopping. 

"If we can get this bill passed, these kids can lead full lives and reach their full potential and make a huge mark on the world," Kirk said

The legislation would provide health coverage for PANDAS patients across the country. He created a survey for students to get support for the bill.

Here is an email he sent recently to NewsChannel 21:

"I’m Kirk Lord, a junior at Summit High School, and I’m working on getting a national bill approved to require insurance coverage for an auto immune disease called PANDAS. The disease manifests after a strep infection is detected by the immune system.

"Antibodies tag a specific peptide that is very similar to a peptide associated with the basal ganglia, and for some children, antibodies don’t stop being produced, and these antibodies cross the blood-brain barrier and tag the basal ganglia, causing that area of the brain to be inflamed. This leads to severe motor tics, anxiety, depression, memory loss, OCD, developmental regression, sensory sensitivities, and handwriting regression.

"The disease is somewhat controversial, as many doctors fail to diagnose children with PANDAS, and some can’t even admit that the disease is real. My family struggled to find the right doctor to diagnose me. Some thought I had Tourette’s, and Stanford Behavioral Sciences even diagnosed me as intellectually disabled, saying that I wouldn’t make it past 2nd grade in a regular school.

"Fortunately, I was properly diagnosed and able to receive IVIG therapy, which is a blood transfusion of enough white blood cells to replace my entire immune system with a healthy, robust one. I remember the day I got it when I was five years old.

"My life had been given back to me that day. I have been able to live an incredible life that I’ve made the most of so far. I’ve pogo-sticked across the Golden Gate Bridge to raise money for PANDAS research, I’ve invested myself in running as I competed at the OSAA 5A State Championships in the 800m, and I’ve made it far past 2nd grade, as I’ve earned straight As throughout high school so far.

"While yes, I do still have some symptoms, like tics, OCD, and anxiety at times (like every high schooler), IVIG has completely transformed my life, and I get to experience it to the fullest and make a real impact on the world.

"IVIG is sure is great and all, but it’s really expensive. One round of the treatment costs $6,000, and depending on the severity, kids may need more than one. What makes it worse is that health insurance companies, including but not limited to Aetna, Humana, and Cigna will refuse to cover the cost of IVIG, claiming that it’s “experimental”. I want to change that.

"There are over 300,000 families in the United States that have a PANDAS child and will probably not receive insurance coverage for IVIG. They’re children will have to live with the debilitating disease and won’t be able to fulfill their potential. BUT, if a national bill to require insurance coverage is passed, then every family with a PANDAS child can give their kids the treatment that they need, and they can live full lives and make a real impact on the world. Every kid with PANDAS deserves to go through the same transformation that I did when I received IVIG therapy."