Using a Heartfelt Plea and ChatGPT to Overcome the Challenges of RX Drug Non-Coverage for My Daughter
In February of 2023 I had just flown across the country to Sioux Falls for work. I arrived at 6:00 pm. Met a couple friends for a bit and then headed back to the place I was staying. I had some trouble falling asleep and about 1:30 I finally dozed off.
At 2:00 am I received a call from my daughter “Blu”. I picked up too late. And when I tried calling back I went straight to voicemail. My daughter was four hours away at college. Finally I got in touch with her. She had a migraine episode around midnight and had collapsed with half of her body paralyzed and unable to move or speak.
She later told me she freaked out for a minute, but figured she had “just had a stroke”. She could hear voices in the hallway outside her dorm room, but could not call for help. After 15-20 minutes she was able to drag herself to her desk where her phone was. Her roommate later told me that the text she got said “don’t freak out, I think I’ve had a stroke and I need your help”. Her roommate got there and an ambulance was soon on the way.
As a pre med student and gaining her speech back in the ER, she was calm, collected, and asking informed questions as she had an MRI and a CT Scan. Soon she would call both her mother and myself. She was still paralyzed but by this time they had ruled out a stroke. She had gotten temporary paralysis from an atypical migraine.
By 2:30 am I had a 4:30 am flight booked. By 6:15 am I was in the hospital with her. Tired and groggy from the intense migraine medications they gave her, she could barely lift her arm and could not stand. We spent the majority of the day in the hospital room and eventually she gained enough strength to be released and we took a Lyft back to her dorm. After I got her settled I got food for us both and a few close friends that had stopped by to check on her.
This isn’t the beginning of the story. For that we have to go back a bit.
Blu developed migraines, like her mother in her mid teens. She had a pediatric neurologist that tried every drug they make for migraines with the exception of some injectables not approved for use on anyone under 18. Upon her 18th birthday weeks before college, she was prescribed Aimovig. Immediately the migraines were gone. We had found the solution! We were working on health insurance for school, I was changing jobs, we researched the student health plan to make sure that this medication was not exempt from insurance. I read the entire list and even called the provider. Everything looked great. Until she tried to fill her first prescription and it was denied. Knowing the consequences migraines can have, we invested the $800 for the prescription that would allow her to function normally.
We began to fight the insurance company. We started the appeals process etc. but those wheels move really slowly an honestly are not very clear. Eventually things came to a head in February. After four months of forking out $800 she was late getting the prescription filled as we hoped for relief from insurance. And that is when things went south.
After this episode we were exhausted and furious and fighting every way we could. After the Pediatric Neurologist tried for a week to get a peer to peer review with the insurance company we got an email saying that they could no longer help us try to get through to the insurance company. About this same time we found out on one of many hours of phone calls that it wasn’t the insurance company that was refusing the coverage, it was the University Health Plan Administrators.
In a last ditch, a month after the episode in an effort to get help I asked chatgpt to help me write a “strongly worded email” and I filled in the details. What it came back with was better, and more convincing than anything I would’ve written:
“I am writing this email with deep concern regarding the coverage of Aimovig for Blu under the student health insurance policy offered by the University. We have been experiencing significant issues with the coverage of this medication, which is critical for Blu’s well-being.
As you are aware, Aimovig is listed on Blu’s formulary and was not mentioned as a drug not covered by the student health insurance policy when we contacted the health insurer before enrolling in the plan. We were under the impression that this medication would be covered under the policy. However, we were shocked to discover that the University has decided not to cover Aimovig, leading to a lack of coverage and a serious medical emergency that left Blu paralyzed and unable to speak.
This lack of coverage resulted in a $13,000 emergency room visit, which is an expense that could have been easily avoided had Aimovig been covered under the student health insurance policy. We have been jumping through complicated hoops for months and have submitted for her neurologist to do a peer to peer review, but we are yet to see any progress.
Blu requires Aimovig for her well-being, and we are urging you to change the policy and cover this medication. We have taken all the necessary steps and have submitted all required documents for Aimovig to be covered, but we have not seen any positive results.
We urge you to reconsider the policy and provide coverage for Aimovig, as this medication is crucial to Blu’s health and well-being. We implore you to take swift action and change the policy to ensure that Aimovig is covered under the student health insurance policy.
Thank you for your attention to this matter. We look forward to your prompt response.”
Yeah. Way more articulate and thorough than I’d have been.
I received an email back informing they were working on it, but could only discuss with Blu as she hadn’t yet filled out the form to let me have access. Last night, out of frustration at the prospect of spending another $800 on drugs, I sent a personally written plea.
“Blu’s neurologist tried multiple times to get a peer to peer review by calling the number provided from Blue Cross, she has emailed and said she can no longer spend time trying to help Blu navigate this issue as she is no longer under 18 and hasn’t been a patient in over six months.
We really need your help on this. I’m going to pick up an $800 prescription from Walgreens in the morning. This medication is the only one we have found that works for Blu. It is vital for her to stay focused on her studies and not worrying about if we can afford a medication or having another episode.
Please help. I know you can not respond to me without the consent form. I will work on that as well. We just really need help. “
This morning we received a call to not purchase the medication. They would be calling shortly.
As I’m writing this sentence I have just come off of a phone call with the University and the prescription will be covered for the next twelve months. At which point we will do a review and move forward! I called my daughter and she interrupted me to tell me the pharmacy had just called and they were covering her medication! She was so incredibly happy and relieved, as are her mother and I.
The question we keep asking is what is so wrong with a system that allows this to happen? We have the money to take care of her, but what about people who don’t? What about older folks, or people that don’t have the time or wherewithal to navigate this broken system? And what in the hell is it going to take to change it? It’s no wonder the US has the highest medical costs and the worst outcomes of any developed nation.
Walter Portz is a community activist, artist and Executive Director of Let’s Skate an organization that promotes skateboarding and the many health and community building aspects of building skateparks.