Sunday, August 21, 2016

Keveyis article that I may or may not have shared

http://www.biopharmadive.com/news/Taro-keveyis-free-rare-disease-drug/418564/

I know I've mentioned it here before, but here's a short article about ‪Keveyis‬ being given to patients free of charge after lack of profit.

One reason for the marketing downfall is that several of us with Periodic Paralysis were unable to tolerate the drug's potassium-wasting potency, which caused us to get worse instead of better. In my case, I'm already on very high amounts of prescription potassium, but it wasn't enough to supplement the loss that occurred on the drug. Anybody with severe Periodic Paralysis will tell you that even the smallest fluctuation of potassium in the bloodstream can affect us. If prescribing physicians aren't familiar enough with voltage-gate ion channelopathies to know how they work, don't expect them to understand how the drug works and how to compensate for the potentially catastrophic side effects. Doctors hear the word "Hypokalemic" and look up dichlorphenamide and think we're bonkers because they don't understand the condition nor the the way the drug manipulates the kidneys and muscle channels to prevent depolarization. A little education can go a long way, but when it comes to our rare disease, a great deal of (continuing) education and experimentation is required. Unfortunately, most doctors aren't up for that, and patients suffer as a result.

While I figure the change from over $100 a pill to free is a write-off for Taro, it's one that is helping patients who are benefitting from the drug. There aren't many, but the ones whose lives have improved are worth it. And for that, we sincerely thank them for their contribution. It's not something to be taken for granted in a country full of capitalist asshats like Martin Shkreli.

I'm still so disappointed that Keveyis didn't work out for me. But knowing my turbulent history with Periodic Paralysis, it wasn't the least bit surprising.