Author Archives: Jay

To Learn True Fear, I Sequenced My DNA

Against all odds, I’m getting older, which in today’s world means that my love of technology is starting to run into my generalized distrust of the monolithic corporations we’ve pledged allegiance to in order to send unwanted dick picks at the speed of light. That means I had some trepidation about handing over my money, DNA, and privacy to a faceless corporation in exchange for a broad estimation of my heritage, but my fiancee wanted DNA tests for Christmas, so here we are. Continue reading

It’s Alive Proves Good Things Do End in -eum

At this point, my fascination with the Universal Monsters has gone on longer than the actual active period of the Monsters* so I’ve read and absorbed just about all the available information about them. So walking into It’s Alive!, an exhibit of “classic horror and sci-fi movie posters from the Kirk Hammett collection” at the Peabody Essex Museum in Salem, MA, I fully expected this to be a simple repacking of the same information I’ve already seen a thousand times.

However, though I know all of these stories and I’ve seen most of these images (though there was a foreign Frankenstein poster I’d never seen), seeing them in a physical space at their original size was something I wasn’t prepared for. I’d seen these images on paper or in pixels; seeing them like this was like taking a walk through my mind and getting to see how all the dots connect.

The exhibit is arranged by theme, with attention paid to chronology, but it jumps the timeline where it will strengthen the connection. I wouldn’t have been able to draw a line between the 1921 Hamlet and 1931 Dracula myself, but by linking the design of the posters, this exhibit has made it so I’ll always think of one when I think of the other.

There are a couple of props—the outfit Boris Karloff wore in the Black Cat, Lugosi’s White Zombie suit, a Wolf Man test mask—but if there is one thing I think everyone should see, it would be the Basil Gogos originals on display. Those covers for Famous Monsters of Filmland are about as famous as pictures of the actual actors, so much so that it’s easy to forget they’re actual paintings, not some clever Photoshop filter. I found myself planted inches away from a Basil Gogos painting of Boris Karloff as Im-Ho-Tep, staring at the brush strokes and chunky swaths of paint for way longer than I’d like to admit. And once you get bored of that, there’s a couple Frank Frazetta originals to stare at too.

Kirk Hammett himself is represented by a display of his Monster themed guitars, along with a nice video package about what all this Monster memorabilia means to him. I wish the guitars were available to play, but I can understand why the museum doesn’t let random jackasses butcher the “Fade to Black” solo while other patrons are trying to study a Strickfaden machine in peace.

Even without the ability to shred I was having so much fun I didn’t even stop to “well, actually…” the guy who said he saw London After Midnight. Being so enthralled that I don’t start spouting off about classic horror is the highest recommendation I can give.

*For the record, I consider Dracula through Abbott and Costello Meet Frankensein (1931-1948) to be the active period, though that doesn’t mean outliers like Lon Chaney’s Phantom or the Creature from the Black Lagoon don’t count as Universal Monsters.

My grandmother putting a bracelet on me while I'm wearing a badass Sgt. Slaughter helmet and sick sunglasses.

Doritos, Prank Calls, and Death

My grandmother putting a bracelet on me while I'm wearing a badass Sgt. Slaughter helmet and sick sunglasses.

There are better pictures of us, but I’m not wearing a Sgt. Slaughter helmet and officially licensed Macho Man sunglasses in those, so fuck ’em.

Marion Louise Estes was married somewhere between 2 and 5 times and had 4 children that we know about. Her favorite hobbies included buying things, lying about the prices of the things she bought, and eventually returning those things in exchange for new things. She once cried when changing cable providers. Continue reading

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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Such a beautiful display

An Open Letter to NBC about Olympic Coverage

Considering all the hype about the conditions surrounding this year’s games, it’s ironic that Olympic fever is hard to catch this year. Time delays, shoddy editing, and apps that barely work are taking a lot of the joy out of the spirit of competition. And then there’s the commentary. Even with 7 commercial breaks per half hour and random outages, you should still at least pretend someone is watching.

Look, I don’t like to criticize unless I have a solution to offer, so I’d encourage everyone/anyone at NBC to hit play on the below video of me doing commentary over the iOS gaming sensation Justin Smith’s Realistic Summer Sports Simulator and book me a flight to Rio immediately.

I’m going to need bottled water though.