Too Much Control

Posted by Francie Khalaf on 23rd August 2021 Additional Needs, Advice & Support, Disabilities

Why do insurance companies get to make the call of if my son can have something to improve his quality of life? Why do insurance companies have so much control over the lives of our children? These are questions that consistently dance around in my head from day today. The power that insurance companies have over making life and death decisions for our children is absolutely mind blowing.

We recently scheduled Sawyer for his vagal nerve stimulator surgery.

In my last blog I talked about it being surgery number 13 and how helpful it would be for him. Unfortunately, two days before surgery they had to cancel it because our insurance company had denied it. Their reasoning stated that we had not tried enough things such as; medicines and that he doesn’t have them often enough.

The thing that they failed to notice is they recently approved his other medicine that we wanted to try, while we wait for the VNS. They approved it, but covered so little that we would be paying $1500 per month for a very small percentage of a chance of it working. When we decided for a different therapy they denied that as well. The vagal nerve stimulator is definitely not a 100% guarantee. Sawyer also doesn’t have seizures every single day he doesn’t even have them once a month. When Sawyer has seizures they require an ambulance ride and an extreme amount of medical intervention. They are very much life-threatening and require sometimes five doses of his rescue to stop them. At that point he either has to be intubated or put on high levels of oxygen because his breathing is so suppressed.

The vagal nerve stimulator could improve his quality of life so much so that even just making the seizures less severe could be life altering. If we do not have to hold our breath anytime we are out of town, any time that he is falling asleep or any time that he is sick should be enough to do the surgery. If this stimulator could prevent an ambulance ride or hospital visit and slow down the seizure so the rescue medicine could work; then maybe one dose of that would be a game changer for us.

Why do they feel as though they can make this life or death decision?

What I don’t understand is why they don’t see that it is a detrimental medical intervention that they have turned down. Why do they feel as though they can make this life or death decision? Do they truly believe that doctors would recommend a surgery that isn’t researched and best for their patient?

When I called the insurance company and the person I spoke to said they couldn’t believe that it was turned down she said she would get back to me in 48 hours with a list of things to do or some answers. I called back after a week and I have yet to hear back and this was two weeks ago. I can't understand why insurance companies hold the power over our lives and our children’s? What can we do to help prevent this? I don’t have all the answers. I don’t even have some of the answers.

What I do know is these people do not walk in our stressful shoes. If you are reading this, I am sure you have been there or heard of someone in our shoes. We are not even a fraction of the people who have problems dealing with insurance. Keep Fighting and keep asking questions.