ANN ARBOR, Mich. – A Michigan 3-month-old will get lifesaving treatment after weeks of insurance denials and precious time having passed.
His mom told the insurance company she was reaching out to Local 4, and that’s when the coverage came.
Now, the mom wants to make sure other families are warned.
Every day crossed off the calendar was another day, mom, Lilly Green worried her infant son, Andrew, was losing mobility he would never get back.
“I contacted you, I posted on my Snapchat, on my TikTok, on Instagram,” Green said.
Green told Local 4’s Kyla Russell what she ended up having to do to get coverage, but it was just three months ago that Baby Andrew came into the world via emergency C-section.
Those first days were harsh and harrowing. Andrew was intubated and fed through a feeding tube.
Soon came a scary diagnosis.
“Spinal Muscular Atrophy is basically a disease where you are missing your survival motor neuron, which is what helps your brain tell your muscles to move,” Green said.
He was diagnosed with type 0, which is the most severe kind.
Andrew was soon transferred to C.S. Mott Children’s Hospital in Ann Arbor.
Green says Andrew has more fight in his pinky than most grown adults, but even resilience can’t outrun red tape.
“The last two weeks, he has had to increase ventilator settings and lose more progress,” Green said.
There’s something that could literally stop the pain from progressing. It’s called Zolgensma.
“Zolgensma is a gene therapy,” she said. “It takes that gene that you’re missing, and it replaces it through infusion, so my son Andrew would have that survival motor neuron.”
That’s why every second matters.
“His neurologist applied for a prior authorization, and she requested for it to be urgent because this medication is time sensitive,” Green said.
Within three days, they got the first answer. The coverage was denied.
Their doctor resubmitted paperwork. It was denied again, this time, over one sticking point.
“There wasn’t consent that he was going to take a steroid, which wasn’t true because it’s the hospital policy to do that,” Green said.
The doctor sent the paperwork again. It had the same message, but the same result: denied.
They ran through every appeal, every option. Then, they escalated it to the Department of Insurance and Financial Services.
“They denied it again, based it off of three more reasons, like the fact that he was on a ventilator and other things, and Blue Care Network did not originally deny based off of all those reasons,” Green said.
At the end of her rope, she took matters into her own hands and reached out to me.
“A day later, I got an email saying they were going to reopen the case,” Green said.
Twelve hours later, the medication was approved.
“I would say I am very grateful that you guys did end up approving our medication, but it hurts that I had to take all those extra steps just to get my son the medication he deserves,” Green said.
“Blue Cross has an extensive review and appeals process for payment decisions.
Our process is thoughtful, conscientious, and based on available clinical information. The information provided initially showed that the patient did not meet required clinical criteria for the use of Zolgensma. When the patient’s family followed up with additional clinical information, the decision was reversed and the treatment was allowed to be paid for by the family’s insurance coverage. This is what the appeals process is for, and we are pleased that the family can now move forward with confidence that their health insurance will cover this treatment.”
Blue Cross