Open Letter to Insurance Companies

August 16, 2023

An open letter to insurance companies:

We are a family that is privileged to have insurance. We pay regularly to make sure it is in place and available when we need it.

Recently, we have needed care that could not be found in-network and has not been covered. We knew this up front and made decisions to pay on our own. And all of this adds up. But we understand.

What we do not understand is when procedures and prescriptions and programs that are medically necessary and in-network are denied.

Our hunch is because of the cost.

For example: During all three of my pregnancies, I had hyperemesis. The thing where you cannot keep anything down - even liquids. And, if not treated with prescription medication, hospitalization is certain.

The medication to treat it is expensive. At the time, it was $100 a pill, one pill per day. And every time I needed a monthly refill, I had to go to battle with the insurance company. And every time, I would remind them of the cost savings of the prescription over the hospitalization that would happen without it.

And now. After searching for a year for viable treatment options during a time when supports for children are very few and far between, we have found a program that is taking new clients, well regarded, highly recommended, consistent, and supportive. It happens to be provided virtually, an aspect that is both welcome and necessary right now.

Oh, and it’s in-network.

Insurance pre-authorized it and we began with optimism and hope.

Now, three days in, we receive a call from a person tasked with letting us know insurance has been denied.

I was admittedly surprised and upset. I asked a lot of questions pointedly. She didn’t have answers. She kept reading from a script and told me she was not a doctor and did not understand the rationale herself. I spoke with three more people. Got disconnected once. When I asked for a copy of the letter they were referring to so I could see it in writing, I was told a letter was being mailed that we would receive in 7-10 days. Thankfully, one of the care center representatives was super kind and is emailing me a copy tomorrow.

Bottom line - a medical director who has never talked to us, never met our family, never spoken with any of the medical professionals who have been so wonderfully helping us navigate our way through this journey, has decided it is not medically necessary and said a virtual program is not generally accepted medical practice. Side note: I am not sure how this is even a thing after 2020. Everything is virtual. Telehealth and telemedicine and teletherapy are all very real, very viable, very effective. I’m living proof of this.

We know this medical director has a job to do. We’re assuming part of the job is to help people get the care they need. But we’re also assuming part of the job is to keep expenditures as low as possible. An insurance agency is a company after all.

And, though it may sound dramatic, these decisions could literally mean life and death. That’s what it feels like a little bit in our house tonight as we have to make some tough decisions.

We have filed an appeal. That takes 30-45 days for a decision which may uphold the initial decision. We have contacted the program to explore options. But it feels like our hands are tied.

We feel helpless. Distraught.

My first thought is to invite the medical director into our home to talk with us. Maybe that would help. But we know that will never happen.

We don’t know how else to advocate for ourselves or all the others who find themselves in similar positions. And we are angry for those who do not have any coverage at all and needed care cannot even be considered.

And, the dear, dear people who have the jobs to call and tell people they have been denied and talk with people who have been denied in the customer care center? I can’t ever imagine doing those jobs.

Make it make sense.