I was picking up my daughter’s SEIZURE medication at the pharmacy counter when the technician slid it back across the counter and said the insurance had DENIED it – again.
Marisol had her third seizure last month in the school parking lot, right in front of me, and I caught her before she hit the pavement.
She’s seven.
I’ve been fighting this insurance company for four months while my daughter shakes herself unconscious every few weeks on a medication that costs $340 without coverage.
My name came up in the appeal letters – Diane, claimant’s mother – but mostly I was just the woman on hold for three hours every Tuesday.
The denial reason was always the same: “not medically necessary.”
Her neurologist, Dr. Okafor, had submitted documentation twice. Twice they kicked it back.
The third time, I asked him to write down exactly what happens when Marisol doesn’t get this medication.
He did.
Then I started paying attention to other things.
The insurance rep I always got transferred to – a man named Brett Colvin – had a LinkedIn profile. Regional Director of Claims Management. The company had a local office twelve minutes from my house.
A few days later, I found out the company’s board was holding a public shareholder meeting.
Open to the public.
I called Dr. Okafor. I called two other families from Marisol’s epilepsy support group whose claims had been denied by the same company, same rep, same language.
I MADE COPIES OF EVERYTHING.
Then I called a local news producer I’d found through one of the other moms.
She called me back in forty minutes.
The morning of the shareholder meeting, I put Marisol’s medication log in a folder – every denial, every seizure date, every ER visit – and I drove to that office building.
Brett Colvin was in the lobby when I walked in.
He recognized my name on my badge.
His face changed.
“Ms. Diane,” the news producer said from behind me, camera already rolling, “whenever you’re ready.”
What Dr. Okafor Actually Wrote
I need to back up, because the letter matters.
When I asked Dr. Okafor the first time to submit documentation, he wrote what doctors write. Clinical language, ICD codes, references to treatment guidelines. Professional. Thorough. Exactly the kind of thing an insurance company can bounce back with a form letter and a checkbox.
When I asked him the second time, he added more studies. More literature. He spent, I think, two hours on that submission. He told me so, almost apologetically, in the parking lot after Marisol’s follow-up in November.
The second denial came back in nine days.
So the third time I sat across from him in his office – Marisol was in the waiting room watching something on my phone – and I said: forget the studies. Forget the codes. Just tell me, in plain words, what happens to my daughter if she doesn’t get this medication consistently.
He looked at me for a second. Then he picked up his pen.
He wrote four paragraphs. I have them memorized now. The relevant part: Without consistent therapeutic levels maintained by this specific formulation, this patient faces a statistically significant risk of status epilepticus – a prolonged seizure state that can cause permanent neurological damage or death.
Permanent neurological damage.
Or death.
I folded that letter and put it in my purse and drove home and sat in the driveway for about fifteen minutes before I went inside.
The LinkedIn Rabbit Hole
I don’t know what made me look him up. Brett Colvin. I’d heard his name so many times on hold, been transferred to his voicemail so many times, left so many messages that went nowhere.
Regional Director of Claims Management. Twelve years with the company. Smiling in his profile photo, standing somewhere outdoors, mountains in the background.
I’m not proud of what I felt looking at that photo.
His office was listed. The company’s regional headquarters. I pulled it up on maps and just stared at the little blue dot for a while. Twelve minutes from my house. I drove past that building twice a week on the way to Marisol’s school.
I didn’t do anything with that information right away. I just closed my laptop and went to check on her.
But I remembered it.
The shareholder meeting came up through a different search, three days later. I’d been reading about insurance company accountability – forums, mostly, other parents in the same hole I was in – and someone in a thread mentioned that public companies hold shareholder meetings and that they’re technically open to the public. That you can show up. That you can speak during the public comment period if you register in advance.
I registered that same night.
The Other Families
Terri Hatch had a son named Marcus, eleven years old, same diagnosis, same company, same denial language. She’d been fighting for six months. She was further along in the appeals process than I was and she was exhausted in a way I recognized, the kind where you’re still functioning but something behind your eyes has gone quiet.
We’d met twice at the epilepsy support group at St. Catherine’s. I called her on a Wednesday evening after Marisol was in bed.
She picked up on the second ring.
“I know why you’re calling,” she said. I hadn’t said anything yet.
The third family was the Pruitt-Garcias. Their daughter Carmen was nine. Same rep. Same denial reason. Same three-hour hold Tuesdays. Veronica Pruitt-Garcia had actually gotten a supervisor on the phone once, a real person, and the supervisor had told her – and I want to be precise here – that the medication “had not met the threshold for medical necessity under the current plan year guidelines.”
Carmen had been hospitalized twice.
So it was me, Terri, and Veronica. Three folders. Three kids. One regional director.
I told them about the shareholder meeting. I told them about the news producer. I told them I wasn’t asking them to do anything they weren’t comfortable with, but that I was going, and I was bringing everything, and if they wanted to come, there’d be room.
Terri said she’d be there.
Veronica said, “Tell me what time.”
The News Producer
Her name was Gwen Sloan. One of the other moms from the support group had mentioned her – said Gwen had done a segment on pediatric insurance denials two years ago and had been looking for a follow-up angle.
I sent her an email at 11 p.m. on a Thursday. Not a short email. I attached three denial letters, Dr. Okafor’s third letter, and a summary I’d typed up of the other families’ situations. I told her about the shareholder meeting. I told her the date.
She called me at 7:40 the next morning.
“How solid is your documentation?” she asked. No preamble.
I told her I had four months of paper. Every letter, every date, every ER receipt, every voicemail I’d saved on my phone.
“Okay,” she said. “I want to meet.”
We met at a diner near her station. She brought a notebook. I brought the folder. She read Dr. Okafor’s letter slowly, and when she got to the part about status epilepticus, she set it down and looked at me.
“Does he know you’re doing this?” she asked.
“He does,” I said. “He told me to.”
She tapped her pen on the table twice. “I’ll be there.”
The Morning Of
I dropped Marisol at my sister Karen’s house at 7:15. Marisol asked me where I was going. I said I had a meeting about her medicine.
She said, “Is it going to work this time?”
I told her I thought so.
I don’t know if that was the right thing to say. I said it anyway.
I wore the gray blazer I bought for my sister’s wedding four years ago. I don’t know why that detail feels important but it does. I had the folder under my arm, the big one, with the tabbed sections. Terri met me in the parking garage. She was wearing a blue coat and she had her own folder, thicker than mine. Veronica was already in the lobby.
The building was glass and steel and very clean. There was a coffee cart near the elevators. People in lanyards were moving around like it was any other Tuesday.
And then Brett Colvin walked out of the elevator bank.
I knew it was him from the LinkedIn photo. Taller in person, broader. He was looking at his phone. He walked toward the coffee cart and then he looked up and he saw my badge – they’d given us visitor badges when we signed in – and he saw my name.
Diane.
I watched him read it. I watched his face do the thing.
He looked at me. He looked at Terri. He looked at Veronica. He looked at Gwen’s camera operator, who was already up on his shoulder.
And Gwen stepped forward and said, “Ms. Diane, whenever you’re ready.”
What Happened Next
I looked at Brett Colvin for about three seconds. He didn’t move.
Then I turned to Gwen’s camera and I started talking.
I talked about Marisol. I talked about the school parking lot and catching her before she hit the pavement. I talked about Dr. Okafor’s letter, and I held it up, and I read the part about permanent neurological damage out loud. My voice didn’t shake. I don’t know how.
Terri talked about Marcus.
Veronica talked about Carmen’s second hospitalization.
Brett Colvin stood there for the first forty seconds and then a woman in a lanyard appeared at his elbow and said something to him and he walked away, quickly, toward a door marked STAFF.
We went into the shareholder meeting. I had registered to speak during public comment. I had three minutes on the clock.
I used every second.
The board members looked at their water glasses. One of them, an older man near the end of the table, looked at me the whole time. He didn’t look away when I finished.
Gwen’s segment ran four days later. By the end of that week, I had an email from the company’s senior VP of member relations. Not Brett Colvin. Someone above him.
The email said they were conducting an internal review of Marisol’s case.
Ten days after that, the approval came through.
I was standing in the kitchen when the notification hit my phone. I called my sister. I couldn’t get the words out right away.
Karen said, “Did it work?”
I said yeah.
She started crying before I did.
Marisol is on her medication. She hasn’t had a seizure in six weeks. Dr. Okafor says we’ll know more at her next follow-up, but her levels are where they need to be. She went to her friend Priya’s birthday party last Saturday and she came home with cake on her shirt and she fell asleep in the car.
I carried her inside.
I put her to bed.
I stood in the doorway for a while.
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If you know a parent who’s hitting the same wall with insurance, send them this. It might not fix everything, but it helped me to know someone else had gone through it and found a way through.
For more jaw-dropping tales of parental protective instincts, you won’t want to miss reading about my daughter’s teacher who tore up her perfect test or the time my daughter was sitting with the man I’d been running from for eight years.
