State just enacted similar legislation
BEND, Ore. (KTVZ) — A junior at Summit High School is working on getting a national bill approved that would require insurers cover an auto immune disease called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, called PANDAS.
Meanwhile, Oregon lawmakers have just approved and Gov. Kotek has signed Senate Bill 628, which requires insurers to cover the syndrome.
Kelsey McGee is speaking with Kirk Lord to hear about his journey, his reaction to the state law’s passage and the progress he’s made and seen on a federal bill. Her report will be on NewsChannel 21 at Five.
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.”
