A question that occasionally comes up on the SCD mailing list is "Why won't the Crohn's Colitis Foundation of America (CCFA) study the SCD?" Prominently displayed on its web page, the CCFA states its goal as follows:
"CCFA's mission is 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."
With its doctors' affiliations, multi-million dollar budget*, Park Avenue headquarters, and chapters throughout the country, the CCFA is a powerful vehicle for distributing information on IBD. It makes sense for someone new to the SCD to think: "I have found something that helps me and I want others to know about it. I will tell the CCFA, they will carry the message and initiate studies." But although its stated mission is to "improve the quality of life" for people with IBD, life improving developments such as the SCD threaten the existence of the organization. The CCFA thrives because IBD is pervasive and seemingly intractable--employees of the CCFA depend on this for their livelihoods. Communicating information on the SCD would threaten the CCFA's funding in two ways:
1) Individual donations. Potential CCFA donors would be less likely to give if they were able to control IBD themselves. As recently observed on the mailing lists, many SCD "old-timers" seem to disappear from the mailing lists. Because the disease is no longer a driving force in their lives, and the SCD becomes a habit, they focus their time on family, work, and enjoying their health. If the CCFA promoted the SCD, the many people benefitting would be less likely to give money to the organization.
2) Pharmaceutical industry contributions. A more significant threat to the CCFA income stream is donations by pharmaceutical companies. People with IBD represent an enviable marketing demographic--a steady revenue stream. If the CCFA sponsored SCD studies with positive results, the pharmaceutical companies would sell less product and be less inclined to continue CCFA contributions.
It's disappointing that the CCFA has ignored people who have contacted them about the SCD. The individuals who created the CCFA in 1967 would probably cringe at the inflexible bureaucracy it has become. However there is a possibility that the CCFA heads may embrace the SCD. Let's take a peak into the conference room of the Mega-Merk-A-Fisz, the pharmaceutical company. The President stands at the head of a conference table where the company's top scientists are seated. They scientists frequently look at the two objects placed at the center of the table. The President speaks:
"Gentleman, as you know, IBD drugs have not provided us the spectacular profit-margins of our other life-enhancing products. However, they have given 25-years of steady, significant income. Recently, that income stream has become threatened. A woman in Canada has written an IBD book describing a diet which puts IBD in remission. Our analysts have shown a direct relationship between increasing book sales and decreasing drug sales. Short of overturning NAFTA and stopping her book from coming over the border, this diet is going to continue to hurt us. We've supplied doctors and non-profit groups with the usual PR statements--"there's no legitimate studies", et cetera. But we cannot hold on forever. We must adapt and take advantage of this change. On the table, you see before you a nut flour muffin eaten by these IBD diet people and our standard gelatin based capsule. My challenge to you gentleman: Find a way to fit that muffin into that capsule . . .
So it goes. As far as the CCFA is concerned, we'll have to wait for its major donors to find a way to profit from the SCD. Oh well :)
* In 1997, CCFA revenue totaled $14.7 million with approximately 19% going to administrative costs.