Three weeks ago I received an e-mail from an SCDer in Amsterdam pointing out that the Crohn's and Colitis Foundation of America (CCFA) posted an article on the front page of their website titled "The Specific Carbohydrate Diet: Does It Work?" A careful reading of the article gave me the same feeling as another SCDer who said:
I wrote them [the CCFA] a long letter attacking the misinformation in their article (I'm sick of SCD being referred to as "the ultimate in low carb". Can they count carbohydrates?) and that they have a moral obligation to pursue more research, and received no response so far. People are encouraging me to publish it somewhere. I just would like to have a copy of all of the "scientific" literature on it so far; I think a case could be made that CCFA ignored a potentially life-saving remedy by not contributing to more research on SCD. Sigh. The battle continues.
I considered writing a paragraph by paragraph analysis of the CCFA's article--the half-truths and "facts" taken out of context. However, I'm in the midst of an intense work project which will consume most of the next six weeks. Therefore, I decided on quicker, more direct action, I sent our highly compensated correspondent to speak with the CEO of the CCFA--telling him my concerns about their lack of research interest in the SCD. If this not-too-often-updated web site receives over 800 visitors a day and people have purchased over 1,300 recipe books since November--the diet must be working for someone, right? Below is the transcript of a conversation with the CCFA head Ed DeRose.
Ed DeRose, President/CEO of the CCFA
- Salary in 2003: $266,750, retirement plan: $23,298
- Office location: 386 Park Avenue South, New York, NY
- (source: page 24 of the CCFA's 2003 IRS Form 990, downloaded from www.guidestar.org)
Dan Satya, coffee maker and part-time SCD correspondent
- Assignment compensation: round trip train ticket to New York + $15 for food and a pencil
- Office location: Lulu's Coffee Shop, New Haven, CT
Ed DeRose (CCFA CEO): Son, I've heard your complaints but you're missing something important. I know you've had your tummy aches and all that but we can't get too involved with this diet business--it wouldn't be fair.
Dan Satya (SCD correspondent): I'm not sure I understand.
Ed DeRose: Well, take something as simple as surgery. Every year tens of thousands of people have all or part of their intestines removed--a snip here, a snip there.
D. Satya: Sounds quite painful!
Ed DeRose: That's where you're wrong. Patients don't feel a thing, they're sedated. We zip up that bit of intestine in a plastic bag and haul it off to the incinerator or the landfill--hardly takes up any space at all--we're mostly water you know.
D. Satya: I don't see what this has to do with studying the diet.
Ed DeRose: It has everything to do with it! Do you like your life . . . nice house? decent job?
D. Satya: Of course! Relatively I have quite a good life.
Ed DeRose: Exactly! And those ostomies, ileostomies, colostomies, drugs, and what have you, they allow you to have that life!
D. Satya: But I haven't had any surgery. I've been using food as treatment. Of course I take some medicine if I travel far, you know, just in case.
Ed DeRose: Junior! You miss my point. Now pay attention. I'm gonna teach you basic economics.
Now that little piece of intestine lying in that landfill--that piece got there due to doctors, nurses, lab technicians. They're supported by an entire hospital, from engineers and security guards to lawyers and computer experts. That hospital buys supplies, it employees constructions crews, it feeds people! That piece of intestine keeps the economic engine running, son! It give people jobs! Purpose!
D. Satya: But what about the guy without an intestine?
Ed DeRose: That's the beauty of it! He can go to the pharmacy for his pills, his bags, whatever. His health insurance company will still process forms. He'll be working and still supporting the community through his payments!
D. Satya: But wouldn't it be better if he wasn't sick?
Ed DeRose: Haven't you heard a damn thing! Of course not! Last year Remicade alone generated nearly $2 billion! Do you know how many jobs that is?
And this guy with a snip here, a snip there, he's happy to be alive. He could care less about your diet--he's never even heard of it--thinks surgery is his only option--that it's natural!
D. Satya: That's ridiculous!
Ed DeRose: No son, that's called smart marketing--not only patients but our docs think it's the way only way to deal with these diseases.
It's good for all of us. Say everyone went on this diet you keep talking about and it helped 80-90% of them. Hell! You'd probably throw the economy of northern New Jersey into a tailspin--effect the whole nation! The world! Son, this diet thing is just not helpful.
You may heal individuals who are ill but you have to think of all those pharmaceutical employees, their mortgages, their kids who need braces. So what if mom or dad or junior has to lose a bit of intestine--isn't it worth it for the greater good?
D. Satya: But if more people were healthy, I don't see it as bad. They'd be happier, their families would have less stress, they could contribute more to society, help build and create. I don't see it your way.
Ed DeRose: Well, you're a fool. More people on your diet won't create more jobs--except maybe in grocery stores.
D. Satya: So a few decades ago, with less people experiencing chronic illness, the economy was faltering?
Ed DeRose: Listen, I don't have time for double talk. Luckily for everyone else, while you were mouthing off somewhere an inflammatory bowel disease sufferer was having a second surgery. A quick snip, keeping the economy strong!
D. Satya: But isn't the purpose of your organization to help those individuals suffering from IBD?
Ed DeRose: Ungrateful smart ass! If you had any compassion you'd start eating waffles with syrup 3 times a day, take lots of antibiotics, get yourself good and sick, have a minor surgery, give something back to society for a change! That friggin' diet. Luckily you guys have no PR! No one's listening to you! Go back to where you came from!
D. Satya: Thank you for the meeting. I'm leaving.
Ed DeRose: Ho! Ho! Alice, bring me the latest financials! Hey, Satya . . . what are you doing back?
D. Satya: Can I have my pencil back? I think you took it while talking.
Ed DeRose: Oh, here you go.
D. Satya: Thanks . . . wow, you have sharp teeth . . . practically bit right through it.
Ed DeRose: Remember that, son. Sharp teeth. We don't mess around it.
D. Satya: You want some more pencils?
Ed DeRose: GET OUT!
To clarify, the above conversation and the name of the CCFA head are fictional. However, the salary, work hours, and office location of the CCFA are real. The real name of the CCFA CEO is Roger L. DeRose.