Tag Archives: Vertex

Still Not Happy About the Price of Orkambi

Everything I know about the healthcare industry is the result of being a frequent customer. I find the process of medical research interesting, but don’t really care about the business of it. Unfortunately, having broken lungs has made me extremely valuable as of late and so I have to pay attention wether I like it or not.

I’m currently taking Vertex’s Orkambi, If you’d like to read all my feelings about it, you can click here, here, and here. But the tl;dr version is that it’s a fine drug for me. I had some side effects during the trial, but I was relatively healthy going into it, so I was able to even everything out and get a little bump in lung function in the process. I find it makes it a little easier to maintain my health, but I’m not ready to jump on the “wonderdrug” train.

I have bits and pieces of a book about my experience in the Vertex trial scattered on my hard drive, but I’m not making a lot of forward motion on it. Partly because writing a book is a painful experience, but mostly because I can’t decide if it’s helpful (or interesting) to anyone for me to be whining about how this drug isn’t quite what I expected. I’m not dead. And with new healthcare bill debacles hitting the US news every day and YesOrkambi  fighting for the drug in Ireland, maybe now is not the time for a nuanced look. I’m one person (and a confirmed asshole). This drug could make my nose shoot nacho cheese and I’d still complain there were no chips.

If they could hand me the money for just one month, it would fix all of my problems.

Though I know there’s a price to pay for being on the cutting edge in a niche market, I feel like $240,000 a year should get me some chips. (I guess “chips” in this case would be “the ability to stop taking other medicines).

But instead of a nacho extravaganza, we’re getting a price increase.

Back in April, it was reported in the Wall Street Journal that “15% of patients discontinue [Orkambi] within three months due to side effects.”

And from the “probably should have seen that coming” department, here’s an article in Boston Business Journal where Vertex has decided to increase the cost of Orkambi by 5%. From the article:

By contrast, many big pharmaceutical companies routinely take annual price increases of close to 10 percent. Cambridge-based Biogen, for example, raised the price of its best-selling drug for multiple sclerosis, Tecfidera, by 8 percent in January.

Orkambi is widely available in the U.S. through insurance coverage, and Vertex does not expect the price increase to affect how much patients pay out of pocket, the spokeswoman said.

Then there’s this piece about Vertex not wanting to disclose their $1.3 million in federal lobbying. I guess the $1.3 million in lobbying is a drop in the bucket compared to their $980 million in sales of Orkambi, but it’d be nice to know how it was spent.

Really, I don’t know how any of their money is spent, other than the money they gave me to be in one of their studies. Maybe the 5% increase is well deserved and has nothing to do with stock prices or a rumored merger and acquisitions. I’m still a little salty from that time they got an earlier than expected FDA approval on Orkambi and changed “everyone in the study will get Orkambi for two years if they want it” to “Let’s see if we can get some money out of your insurance.” It’s like being a kid again and having mommy and daddy fighting about big money while I’m looking around for $10 to buy a Spider-Man figure. I feel helpless while this big battle rages around me.

Even with all my nitpicks, I’m still on Orkambi and it’s helping to keep my lung function stable. It’s not like I’m going to boycott until the price drops. But at the end of the day, it feels like a lot of people are getting rich off of me being alive. I just wish I was one of them.

I Approve of Orkambi, But Not of the Price

Orkambi—the new Cystic Fibrosis drug from Vertex Pharmaceuticals—just received FDA approval. I was hoping that it would, because it’s a fine drug. That’s my review of it: it’s fine. It does some things very well—my lung function is currently hovering around 77%, which matches my adulthood high from 2009—while other things—my digestion, diabetes and sinuses—haven’t responded as positively. If you’d like, I wrote a whole bunch of words about my experience here, here and here. Most of that still applies, though I’ve since switched digestive enzymes and added a long acting insulin to my routine, both of which have been positive changes. With my new enzymes, I’m able to get away with around 240,000 units of lipase per meal, which is down from the all-time high I hit during the study—300,000, a number that’s probably unsafe–but still above my pre-study number of 200,000 units. Continue reading

Thoughts on Vertex, Spin Machines and Destabilization

While you read, enjoy this picture of my lungs.

While you read, enjoy this picture of my lungs.

Yesterday, UNC School of Medicine published a research article in Science Translation Medicine saying that they found evidence that Vertex Pharmaceuticals experimental potentiator drug—the one that is supposed to move the defective CFTR protein—is destabilizing the CFTR protein after the corrector drug fixes it.

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