Cerebellar ataxia update: bitch costs HOW MUCH?!

I have some advice for you: if you’re going to get sick, don’t feel the need to be innovative about it.

Nothing good comes of winning at Stump the Doctor. No, come down with something run of the mill, something ho-hum, something boringly common. Or be rich. One or the other.

Back in May I wrote about my evolving issues with spinocerebellar ataxia, a rare brain malady that affects your speech and movement. Short version: it sucks. No treatment, no cure, no hope for one. If you recall, the docs wanted me to take a DNA test to confirm the specific type I have (they suspect it’s SCA-6, if it matters), but my co-pay on the test was going to be $7,000. So we’re just going to have to go on suspecting, I guess.

So I went back for a visit with the specialistas yesterday and they inform me there’s this drug that’s showing some actual promise for helping the symptoms of ataxia. It’s an ALS medication called riluzole, and they think it might be worth trying.

Trust me when I tell you that I’m all in. So they order in the prescription. I cannot wait.

A few minutes later the pharmacy calls me. They have this prescription order, but it’s kind of spendy, so they want to make sure I’m cool with the price tag before they fill it. The cost? $2,200. For three months. And that’s after the insurance company picks up their share of the tab.

[sigh]

I’m now investigating possible plan Bs. Can anybody recommend a good Canadian pharmacy?

 

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6 thoughts on “Cerebellar ataxia update: bitch costs HOW MUCH?!”

  1. I also have been diagnosed with non-specific SCA (given that there are I believe over thirty versions now). I was in contact with a Dr Romano the researcher in Italy whose research results have been positive. My original neurologist refused to prescribe based on lack of long standing evidence. However, my new neurologist was willing to prescribe and after a $278/month charge without insurance he was able to persuade them to accept the prescription which is now $100/month.

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