Tag Archives: Cystic Fibrosis

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.

5 Things I Wish Someone Told Me About Having Cystic Fibrosis

May is Cystic Fibrosis Awareness month, which always makes me feel like I should write a stirring, insightful piece about the challenges of CF. In lieu of that, please accept these 5 things I wish someone would have told me about dealing with CF.

Bonus Entry: If you find the orange enzyme, you get to tour the factory!

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Want vs Need: Time Investment

My medium is watered down acrylic on printer paper.

I have this hanging above my computer desk.

I need to write a sequel to my first book, Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. At least, that’s what I keep telling myself.

As I get older, I’ve really started thinking of time as a finite resource. I always thought I did, but without any real responsibility (beyond breathing, that is), it’s easy to labor under the illusion that there’s still time to do everything. It’s the subtle difference between “I might as well do this, I’m going to die” and “I need to get this straightened out before I die.” The truth is, the world does not need a sequel to Can’t Eat, Can’t Breathe anymore than it needed Can’t Eat, Can’t Breathe in the first place, which is to say not at all. Still, it remains the piece of creative work I’ve gotten the most feedback on and it’s one of my few projects that ended up in profit so in my head a sequel makes sense as a time investment.

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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

A PSA for Cystic Fibrosis Awareness Month

May is Cystic Fibrosis Awareness Month. I don’t actually say that in the following video, because I don’t want to constrain Cystic Fibrosis Awareness to just one month; every month should be Cystic Fibrosis awareness month.

In any case, I feel like the angry swearing thing has taken me as far as it’s going to go, so here’s a positive video about how I’m not letting Cystic Fibrosis stop me from living life to the fullest.

On All the Things I’ve Wished I Was

This is pretty much how I see myself in the mirror.

This is pretty much how I see myself in the mirror.

The first inkling of an idea is intoxicating, filled with the promise that this is going to be the idea that changes everything. At that moment, the goal is right in reach and every door is open; this could lead anywhere. But the cold light of day moves the goal line somewhere over the horizon and forces you to pick a door. That door leads to more doors and you don’t always get to go back the way you came. Doors turn into walls and possibilities die. That’s why so many projects remain unfinished—it’s much easier to deal with what they should be rather than what they could be. The ones that do get finished are often hated for what they’re not, until a little distance proves them to be “fine.” Continue reading

Life as a Plinko Chip

Plinko Video Game

Fun Fact: This is one of the worst video games I’ve ever played.

I live my life like a Plinko chip: I rarely end up where I meant to be and there’s usually not any money when I get there. However, if you can correctly guess the price of a Mr. Clean Magic Eraser, you can throw me from the top of the stairs. Continue reading

This works out much better than just wearing extra socks.

Die With Your Boots On

This works out much better than just wearing extra socks.

Take that, snow! I’ve got boots on this time!

When I feel like disappearing up my own ass, I think about the things I care about. I don’t mean family and friends–that’s boring. Saying you care about your family and the people around you is like saying your car is really good because it goes forward. It’s as close to saying nothing as you can get without using silence. Continue reading

Staying Alive is a Lot of Work: Holiday Reflections

I don't have a great picture to go here, so here's one of me eating waffle fries.

I don’t have a great picture to go here, so here’s one of me eating waffle fries.

I’m a giant fucking production. At minimum, it takes me 8 pills and one injection to get ready to eat, which means it costs about $70 for me to even think about having dinner. (luckily I have insurance right now, so I’m not paying that directly). If I ever had to pay $70 for a meal, I’d crap myself in protest. Even if I decided not to eat today, it still costs roughly $60 for me to wake up. Sure, I could wake up and not do my pulmozyme, but it’s not worth it. Continue reading