IVIG coverage for PANS/PANDAS in Michigan

Our son Jack is nine years old. We adopted him at birth. At age 3 he was diagnosed with Autism. On his 4th birthday, while running at school, he fell headfirst into a wooden bench and had a mild concussion. From that moment on, he has had severe food aversions, particularly when it comes to his sense of smell. After contracting Covid in January of 2021, he developed a tic, began picking at himself until he bled, smearing feces, and displaying other stimming movements (flapping hands, rocking back and forth, slapping his chest). We began working with a pediatric neurologist out of Henry Ford Health System who immediately believed that Jack has PANS/PANDAS. PANS/PANDAS is an acute pediatric neurological disorder where infections, both viral and bacterial, or head trauma can result in excessive inflammation of the brain and an increase in obsessive compulsive disorders. These symptoms can worsen in kids that already have a history of OCD or can come on abruptly for kids who have never experienced those symptoms prior to the infection. Jack’s doctor prescribed IVIG infusions. IVIG infusions are an intravenous transfer of donor plasma (immunoglobulins) that helps decrease inflammation and prevent the immune system from attacking the body. For six months Blue Cross Blue Shield of Michigan covered Jack’s  infusions, and the result of these infusions was no less than a miracle.  He seemed to process things faster, think more clearly, his tics and stimming were practically gone and overall he seemed happier.

In June 2023, Blue Cross said they would no longer cover the inpatient care associated with IVIG infusions. We worked with the doctor to find an outpatient IVIG company in which Blue Cross promptly denied coverage.
We are at the final stages of the external appeal process. The next step is to go to the state and file a complaint against BCBSM’s practices. IVIG is covered for PANS/PANDAS patients in 10 states and legislation is underway in several others for coverage.  Please consider signing this petition to put the pressure on Blue Cross Blue Shield of Michigan to get IVIG covered in the state of Michigan. As we approach the one year anniversary of Jack’s last infusion we are seeing a rapid increase of his symptoms. The benefits of the infusion lasted for about eight months, but the benefits are no longer there and he needs his IVIG infusions again to help him be successful. It is unfair that BCBSM gets to determine our child’s fate and we are demanding a change!