The September 26, 2002, issue of U.S. News and World Report contained a 126 word article titled "CROHN'S DISEASE: Gut Check". The short article spit out the painful facts about the disease: "perhaps a million Americans suffer from bleeding, cramps, and terrible weight loss as their guts get battered." Then it mentions that in a "small group of patients", the drug Remicade "reduced inflammation and closed some holes." That's the article, it doesn't offer any information beyond the beginning of Centocor's July 1, 2002 Remicade press release. 1 A true article would have at least mentioned the medication by it's scientific name, not only it's trade name. If it was real news it might mention how well the placebo group did or side effects or Remicade's efficacy versus other drugs used to treat Crohn's. The blurb ended up being little more than a shameless pitch for another medication.
But who can blame them. The competition to sell IBD drugs remains fierce. Currently, Proctor & Gamble Pharmaceuticals' best-selling, most profitable drug is Asacol. The Crohn's and Colitis Foundation features a link to an "educational site", www.myucguide.com, which is sponsored by Proctor & Gamble. On the site, you're presented with the pictures and biographies of six diverse individuals who suffer from IBD and have volunteered to open up their personal lives:
- There's Hope, she's 27 years old, a shapely blond who's recently married and divides her time between being a part-time yoga instructor and co-owner of a frame shop.
- And there's Alex, the 39 year old African-American who's CEO of a web design firm, a frequent flier, and blues aficionado.
- Let's not forget about Ray, the 55 year old semi-retired motorcycle enthusiast and designer of homemade furniture.
- The group is rounded out by the athletic blond male college student, the middle-aged, red-headed junior-high teacher, and the African American woman who's a single working mother (of course). . . .
They look good: Hope, the yoga instructor and Glenn, the male college student, could have burst out of a Mountain Dew commercial. If you click on any of the six IBD patients you will get to see photos of their lives and learn their Likes, Dislikes, First Reaction Upon Hearing Diagnosis, HOW THEY FEEL NOW, And Words Of Wisdom. (In case you're wondering, all of the "HOW THEY FEEL NOW" sections mention Asacol). They're also friendly, you can sign up to receive e-mail from any of them. They'll share their struggles and advice for dealing with flare-ups. However, they cannot e-mail you back: they're not real people. They're composite characters created by P&G marketers. The people in the pictures don't have IBD, their histories are a "reality-based" fiction. According to the site, your "virtual" guide is "someone you can imagine being friends with, someone you connect with for reasons all your own."2
Why would P&G go through the trouble? Putting up a such a website is not a cheap endeavor. Well, if you do sign up to receive e-mail, each "personalized" message comes with a story, a positive "you can do it" quote, and a reminder that taking regular medication, whether you feel sick or not, is the way to go. In addition, there's always the hint that Asacol, the P&G created drug, may be the best treatment.
So what's wrong with a company reminding you to take your medication? Nothing. So what's wrong with them saying that their medication may be one of the better ones--also nothing. And a link from the CCFA--and possible tax breaks for being an education site? Well (nudge, nudge), that' s OK too . . . right?
With all treatments toted and researched by the CCFA focusing on drugs, other treatments are getting lost in the picture. The SCD diet is not a radical, unfounded treatment. There are no instructions which say, sell your possessions, leave the country, and hand over life savings to a snake charmer. Actually, the SCD speaks more along the lines of P&G: it says to keep taking your meds, talk to your doctor, but also use this, nutritionally sound, diet. After a month, you can tell whether it is having a positive effect. If so, keep using it. As the months go on, in half year or a year or so, you can get off of your medications. The disease is in remission because you're eating what you can digest. The big difference between a lifetime of diet and a lifetime of drugs is that with the drugs, you're fighting your own system--never getting rid of the triggers of the inflammation. There's a constant battle stewing in your gut--a battle which robs you of energy and often ends up with the disease winning out: within twenty years of being diagnosed, 80% of people with Crohn's have surgery for the disease. But if the diet works for you, the battle's over, there's no inflammation so you don't need drugs to fight it back. If something does trigger a flare-up, say accidentally breaking the diet during a trip overseas, then use drugs to alleviate the acute situation--but continue using the diet.
Currently the CCFA is not conducting research for the SCD. They may say there are no studies and or no one has submitted a proposal for a good study, etc, etc. But most people on the SCD are not doctors, they're people who work, who have lives: apartments, kids, houses, mortgages, food to cook . . . For help, they look to the CCFA, an institution ostensibly set up to "to cure and prevent Crohn's disease and ulcerative colitis through research, and to improve the quality of life of children and adults affected by these digestive diseases through education and support."3.
Perhaps more people on the SCD should send letters to the CCFA. Sure many of you have tried and been rebuffed, given the cold shoulder after years of paying membership dues. But if they receive inquiry after inquiry about the SCD diet, letter after letter, perhaps they will do more than link the front of their website to Proctor & Gamble, Axcan Scandipharm, AstraZeneca, and InKline Pharmaceutical Company, Inc. It won't serve their financial interests as much to do a diet study: except for a list of foods to eat and avoid, there's no long-term product to sell related to the diet--no corporate sponsors. But the CCFA could continue to receive money from its members, it could use its local support groups and physician networks to actually help people. Medication still has it's place, especially in acute situations. In addition, not everyone is ready to switch their diets because it's inconvenient--some prefer fast food and ostomy bags. But diet should be researched so that it will be presented as a choice. The US is the place known for personal improvement, re-invention, do-anything in seven to ten steps. If the diet enters discussion within the CCFA, it will become more commonplace, thousands of more people will use it, cottage industries will rise up to sell food, and less people will sign up to receive e-mails from virtual characters . . .
Until then, use the Breaking the Vicious Cycle book (xerox it from the library if you have to), read the SCD websites, and join the SCD e-mailing list to have a go at it on your own. (Actually, you won't be completely on your own--the mailing list has real people--not personalities hatched by marketers.) If you try the SCD for a couple of months, at worst you'll spend more time in the kitchen and become a better cook. Or, similar to an estimated 80%-85% of people, you'll start getting much better:)
3 Crohn's and Colitis Foundation of America mission statement which may be seen at www.ccfa.org