In the last few months, I’ve had to teach myself to give Laura shots. I’ll write about that experience in another post, but today I wanted to tell you about Acthar Gel.
The second time we went to the Mayo Clinic, Dr. Fervenza told us there was not much left to do and he was going to recommend a prescription for Acthar Gel as a last resort. She would need an injection twice a week for six months. The only problem is that it is VERY expensive, he said, and insurance usually will not pay for it.
“How expensive could it be,” I thought. Well, you know what they say, don’t ask questions you really don’t want to know the answer to.
“$28,000 a vial”
Are you freaking kidding me?!?!? Someone accidentally fell asleep on the keyboard and added a couple extra zeros right? WRONG, That was the actual price and just as Dr. F had said, insurance was refusing to pay for it. Why is this thing so expensive? Is it some new miracle drug? Does it guarantee that she’ll be cured? Far from it. It’s been around since the 1950’s and I found this NY Times article that said there were no real tests to show that it actually worked at all on kidney disease. No wonder the insurance company didn’t want to pay for it!
The pharmaceutical company said they would give us a couple vials free while they appealed and tried to get it covered. Two weeks later we got another denial letter. “EXPERIMENTAL TREATMENT” was the reason for denial. They appealed two more times and each time we got a denial letter with the same reason for denial.
We were then referred to NORD (National Organization for Rare Disorders) and after filling out the application for assistance, we were approved and have been getting the medication for free. So I’m hoping that this medication will actually make a difference.