The latest on the Friedreich's ataxia drug

The drugmaker has a special program, they say, to ensure everyone who needs the drug can get and afford it.

I worked with them and my local doctor to get it prescribed, and a few days later, I got a call. (Actually, Mom did, because I can’t hear on the phone.) 

Good news, your insurer approved the purchase of the drug, they said. Oh, and your co-pay will be $6,000 a month.

But don’t worry. We have a co-pay card, which will help. We’ll send you info.

On reading about the card, I saw it had an annual maximum meaning it will help for 2 and a 1/2 months before running out.

Back to the affordability program: Is this for real? we essentially asked.

Yes, they said. What you need to do is use the drug for two months  with the co-pay card, then call our financial aid department, which is different from us. They’ll see what we can do.

This situation raises two thoughts in my head, neither of which endear drugmakers to me:

1. They want to hook you on the drug. I don’t mean addicted. I mean that after two months you can’t bear to think of life without the drug, so you’ll pay anything.
2. They are totally setting the monthly price by what you earn.

A friend of mine works to get drugs approved and into people’s bodies. She is kind, smart, and passionate about helping people. I am trying to make her who I think of when I think of the pharmaceutical industry.