Further harm, CCFA word play

In high school, we read George Orwell's Animal Farm, which told the story of animals chasing away their cruel owners and running a farm themselves. After chasing the farmers off, they painted seven "Commandments" on the side of the barn--principles to guide their activity from that day forward. At first things were hard but they survived through cooperation and a spirit of generosity. However, the pigs, the "smartest" animals, began to gather power and control, making life quite plush for themselves, and straying away from the principles that they started with. Part of the pig's control came from their superior memories and ability to manipulate the written principles. This allowed them to guide thought while cutting off options for others.

Two examples of the pig's manipulation of the principles appear below. They secretly added the italicized words to justify their actions:

original: All animals are equal.
changed: All animals are equal, but some animals are more equal than others.

original: No animal shall kill any other animal.
changed: No animal shall kill any other animal without cause.

The pigs used these changes to enrich themselves and keep themselves in power. In such manipulation, they caused unneeded suffering. These days, most people remain wary of what they read and hear. As a result, writers have also become more subtle, by repeating themselves, perhaps adding a word here, or dropping a word there. As a result, it creates an environment where it becomes harder to distinguish the truth.

For a longer example of subtle word manipulation, I have taken two paragraphs from the CCFA website. The first paragraph is a bit dense to read so I have boldfaced words which give the general feel of the paragraph.

The FDA recently approved natalizumab (formerly known as Antegren) for the treatment of multiple sclerosis. Natalizumab is now known as Tysabri,® and is currently undergoing Phase III trials in Crohn's disease. In September of 2004, Elan Pharmaceuticals filed for approval of natalizumab with the European equivalent of the FDA for use in Crohn's disease, based on a completed Phase III study for induction and maintenance of remission. The large initial induction study known as ENACT-1, which enrolled 905 patients with Crohn's disease, did not show significant benefit over placebo, possibly due to a higher than expected response rate among those patients assigned placebo. However, the subsequent maintenance study known as ENACT-2 showed significant benefits among patients who received 300mg infusions every 4 weeks in terms of clinical remission, response and ability to stop steroids. A second Phase III study is ongoing, and once those results are available, natalizumab may undergo FDA review and approval. This drug is an antibody that inhibits a specific 'adhesion' molecule on certain immune cells, preventing them from migrating from the blood stream into the intestines and adhering to the intestinal lining, which is a major cause of inflammation in Crohn's disease.

All right. So what? It's a standard news item on the CCFA clinical trial news section. They're testing a drug which so far hasn't done anything but may help us. It's honest communication . . . well, maybe not. In the fall of 2002, the CCFA helped push this drug via a webcast. At the time, the drug had many side effects, the common side effects including "chest pain, abscesses associated with pain and swelling in the anal/rectal region and abscesses that may open in the perirectal (rectum) and perianal (anal) region". (from consent form for antegren clinical trial). Now the CCFA has a red boldfaced warning on the top of their home page saying not to use the drug--it has been suspended from commercial distribution because of severe side effects--including death. This was not unpredictable, this powerful drug inhibits the immune system.

However, the CCFA, knowing of possible side effects, continues to push similar drugs, encouraging people to go to clinical trials. Even if you experience bad side effects, the CCFA touts clinical trials as a postive thing. Note the sentence below from the CCFA's story of someone who participated in clinical trials:

"It was a good thing to do," she says. "Even if wouldn't have helped me, it might help someone else." (from CCFA Introduction to Clinical Trials)

Clinical trials are multi-billion dollar business--with many companies beginning to outsource this work overseas in order to cut costs. No one should feel obligated to be a guinea pig--especially with new classes of drugs that have especially severe side effects.

The second CCFA paragraph I have copied appears below. Note the negative feelings generated by the boldfaced words:

Often, patients have questions regarding The Specific Carbohydrate Diet (SCD), popularized by Elaine Gottschall, M.S., author of Breaking the Vicious Cycle. At this time, the SCD is supported only by patient testimonials, not by systematic studies. With diseases like ulcerative colitis and Crohn's disease, the only way to see if any treatment has widespread value is by appropriate, rigorous testing.The diet itself is not particularly unbalanced, but many patients find it particularly onerous to maintain. Decreasing poorly digestible carbohydrates may decrease symptoms of gas, bloat, cramps, and diarrhea in patients with IBD, but that is not the same thing as decreasing the inflammation, or affecting the disease process. Unlike the gluten-free diet for celiac sprue, which has a well-researched basis, and well-demonstrated track record for affecting the underlying mechanisms at work in the disease process, the SCD does not. Bottom line: it may be worth a try (there are plenty of other diets being touted in the marketplace), but do not abandon your conventional treatment, and keep in touch with your doctor.
(from www.ccfa.org/research/info/diet)

First, I'm surprised that the CCFA finally mentioned the diet--they must be getting an increasing number of inquiries. Now, although the diet cannot cause further harm, and even though they admit it may have positive effects--the CCFA tries to dissuade readers from using it by portraying it as too difficult--read the boldfaced words again. However, they do not outright lie about the diet, they even say "it may be worth a try." But in this case, a few words may mean the difference between trying the diet or participating in a clinical trial--perhaps even the difference between life and death.

These paragraphs show how the CCFA uses subtle language to color facts: test drugs that have literally killed people are shown in a neutral or positive way--especially in the CCFA webcasts. However, alternatives (i.e. SCD) which are working for tens of thousands of people are barely mentioned and portrayed as unfavorable.

Although not quite Animal Farm, the CCFA has framed information so that it ends up doing more harm than good--as well violating its basic mission statement "to cure . . . prevent . .. improve quality of life." Now, they could turn that all around overnight. Put time/money/energy in the diet: researching how it works and using their extensive networks to both gather and disseminate information. They might lose some pharma funding but they would gain many friends among patients as well as physicians. Also, the CCFA organization and its employees could regain their integrity.