Rich People Living with Crohn’s Disease
Today I am not feeling so hot – the kimchi fest of last night maybe wasn’t such a super idea. Still, it’s always a risk eating anything (sometimes even rice bothers me) and I’ve made my peace with that¹. As I was thinking about this I remembered that a few days ago my friend sent me an email saying that she’d seen a commercial on TV for a website called “Living with Crohn’s Disease.” And I sighed. Because I’ve encountered these guys before.
Living with Crohn’s Disease is run by Centocor Ortho Biotech Inc., makers of a very successful and very expensive drug treatment called Remicade. And this is where things get confusing.
There is also a blog called Living with Crohn’s Disease, which as near as I can deduce isn’t at all affiliated with Centocor, but it’s hard to tell – “Scottie Roy,” the fellow that ostensibly runs the site, has little to make him seem like anything but a fabrication, aside from the fact that he doesn’t seem to have an ulterior motive (I could email him and presumably clear all this up, but then I’d be confused with an investigative reporter). Roy’s blog is often informative if utterly without personality² (I would never have read this arresting Esquire article written by a Crohn’s sufferer, elsewise).
Let me get to my point: how moral is it that a drug company is running a “community” for its potential customers? When you put it that way, it doesn’t sound so good. On the other hand, who better to host this sort of whine-fest than the people making the money off it? Oh, who am I kidding, I can’t be neutral about this; I think it’s fucked. Remicade costs $2000 per dose. PER MOTHERFUCKING DOSE! The alternative is to use the hated prednisone, a steroid with more side-effects than badly cooked crystal meth — but! — at $20 for a generic-brand run of it, guess which one your health insurance is going to pick? Now I’m ranting.
And then we have the website itself, which appears to have been assembled over the course of 30 minutes by someone with a lifetime subscription to iStockPhotos. Wee! Even with Crohn’s you can look forward to having your frisbee deathgripped by a mob in ecru.
Even better yet! Oh my god, this makes me actually laugh. Yay, tickletime! And you can eat all the dandelions you want! Oh, the laughter is hurting my diseased colon.
As an experiment, I decided to sign up for the “Living with Crohn’s Disease” (website and not blog) symptom assessment quiz, wherein I assumed I’d be told that perhaps Remicade was the drug for me? Until I read the EULA at the bottom:
“Your name, address, and other information that you give us will be used by Centocor, Inc., and companies that work with Centocor, including other affiliates and parent companies, to support Centocor’s business.”
Bright red font is my emphasis. Because: HOLY FUCK, NO SHIT. I can’t even be sarcastic about it, it’s so cut and dried. In my apartment building is a British couple that I’ve come to be friends with, and one night over dinner they remarked on the blatant and horrific American trend of marketing drugs directly towards customers. “Ask your doctor if Prodick is the drug for you,” etc and etc. It launched a mild discussion (I played the devil’s advocate: shouldn’t people be informed of their options outside the doctor’s office?) that I still haven’t personally resolved, at least until I saw Living with Crohn’s Disease (website and not blog). One thing I know for certain: drug companies should not be allowed within 100 yards of stock photography.
¹ And by “made my peace” I think we both know I mean “have developed a stable hate towards.”
² I’m also concerned about the fact that his “posts” consist entirely of fully copied articles from other sources, and often with little effort made to clarify that he didn’t write them. I’m not saying this is done purposefully, only that it is another point making it difficult to tell if the blog is legitimate or not.
Here’s an example of why you should trust your doctor to find your drugs for you:
I had some lovely toenail fungus a while back and I told my dad about it (who is a doctor). I said that I wasn’t one to listen to drug company commercials, but it looked exactly like the toes in the commercial with the little yellow monsters. He told me that their pills cost you about $300 a month (and insurance won’t cover it) and you have to take them for 3-6 months and there is a good chance that it won’t work. He prescribed me a drug that is more effective and is covered by insurance, though it didn’t really matter because the full course cost me about $20 so it didn’t come close to my deductible.
I asked him about the commercials that tell people to go ask their doctor about a drug. He said that aside from decongestants and allergy medicine, people don’t really ask him about drugs. I guess that most of his patients trust him to know more about the drugs than they do, which is probably a good thing.
This, dear sir, is an excellent point. New drugs are a major cash cow, and making them trendy is what helps big pharma make money.
On the other hand, I wonder how often you’ve had to really research your own vaguely exotic disease while looking for a treatment. I mean this is a kind way (after all, you’re my favoritest webnerd), but looking for something to help you live like normal people or at least not be in constant pain is not the same as toenail fungus. Maybe.
This is fun! I like this topic.
I mostly just mean that I wouldn’t ever take a commercial’s advice when it comes to my health. A competent doctor will make use of some really great sources of information for their patients’ health that you and I won’t have ready access to or won’t know how to utilize as well as a doctor would.
Then again, maybe my dad is a nerd who likes to read medical journals more than other doctors.
I certainly, on the whole, trust a doctor’s expertise more than I trust my own. And I’m not saying that a person should insist that a doctor supply them with a drug despite the doctor’s misgivings, but on a more personal level I’ve had the experience of asking, “But what about Blahdeblah” and have my doctor go, “Uh, I don’t know anything about Blahdeblah.”
Actually, here’s a better anecdote: I take a drug called Asacol for the Crohn’s disease, but I hate taking it because it makes my hair fall out. Not so much that people can tell from looking at my head (I have a thick head of thin hair, which is weird), but I shed so much of it that I have to clean out my shower drain three and four times during a single shower. When I brought this up to my long-time gastroenterologist, he gave me a funny look and said, “That’s not a side-effect of Asacol.”
We had a stare-off. Because it was definitely happening to me, and only when I was on Asacol. He suggested, eventually, that stress was to blame. I countered that I was often less stressed on the Asacol, primarily because I often felt better physically. He countered that there is a belief that the body takes about 90 days to cycle through a hair-loss-due-to-stress cycle, and that women often suddenly loose hair exactly 90 days after giving birth, as an example.
Anyway, we went back and forth on this and I still believed it was the Asacol (after 10 years of cycling on and off the drug, I feel pretty confident about my conclusion) and then one day I Googled “hair loss and Asacol” and behold, whole communities of people who have the same thing happen.
So in this instance, despite having access to better laboratory information, I believe my doctor is wrong. And I like and respect him.
On the other hand, 85% of the people on those medical forums are totally batshit, so I’m not helping my argument.