The Future of Crohn's: Drugs with Fewer Side Effects Top Patient Wish List

In 1983, I agreed to be a founding member of the Washington, D.C.-area chapter of what is now the Crohn's Colitis Foundation of America (CCFA).

I had just undergone one of several small bowel resections for Crohn's disease. When one of the doctors on the new chapter's scientific advisory board asked what my goals were, I responded with two: to stay well enough to rear my pre-school daughter to adulthood and to see $1 million raised for research toward finding a cure. Both have come to pass in the ensuing 25 years.

I have some new goals now, some of them the result of exciting Crohn's treatments developed in recent years:

Safer high-tech treatments: For those of us who need the heavy-hitting immunosuppressives such as Imuran and 6-MP, I want to see a method of developing more precise dosing recommendations and improved efficiency. I would also hope for fewer side effects such as bruising and catching every bug in every sneeze around us. Even entering a hospital full of germs can be dangerous.

Many Crohn's patients who have had the crème de la crème of treatments - the anti-tumor necrosing factor (TNF) agents Remicade or the newer Humira - have had to wade through all sorts of warnings about lowered immunity and the possibility of either drug activating latent tuberculosis. I would love to see the development of newer anti-TNF drugs I could take without feeling I'm at higher risk of death from the medication than I am from the complications of inflammatory bowel disease (IBD).

In recent years, we have seen a lot of new information suggesting the gut of a Crohn's patient doesn't know how to handle bacteria that are normally beneficial to digestion. We have a couple of drugs on the market to combat bacterial overgrowth. However, I have yet to encounter a patient with a specific regimen in place to handle recurring bacterial problems.

Improved access to health insurance: It's difficult to get unless you work for a large employer. Pre-existing condition restrictions and permanent exclusions for certain conditions make some medical insurance policies nearly useless to patients with Crohn's disease. We can do better.

An easier path to disability income: Fortunately, in the last few years, the definition of what constitutes a disability regarding IBD patients has been refined. However, it still often takes a lawyer to get a favorable ruling or to maintain a disabled status. This is not helpful to the patient who can't keep a job due to having to run to the bathroom every half an hour after repeated surgeries or whose fever sends him home at noon several times a month. For most of us, it's impossible to get any type of disability insurance that will cover times when we can't work due to our disease.

A cause and a cure: All patients are hoping for a cure in their lifetimes. Failing that, we would take naming a definitive cause. Since I was diagnosed in 1979, I have read various hypotheses as to what causes Crohn's disease. I have heard about everything from putting patients on elemental diets to studying E. coli in sheep.

When the disease was first isolated, it was labeled intestinal tuberculosis. We've since heard speculation that it could be the result of eating too much or too little fat, or too much fiber, or of picking up some weird organism while traveling overseas (what about those of us who haven't traveled outside the country?).

Public education: When people hear the term "autoimmune disease," many assume it means the ill person is contagious. There is no proof that anyone with Crohn's disease can pass it to anyone else. We need more extensive public education about IBD and other conditions where the disability might not be visible to the naked eye. My co-worker might not think another employee in a wheelchair is lazy for not doing something physical at work. However, without knowledge of the disease or any outward sign that I'm sick, her impression of me might be less charitable if I failed to do the same task.

All of these hopes point to one general goal: learning lots more about the illness. All we really know is that our bodies attack themselves as the result of an odd autoimmune reaction.

That's small comfort when suffering.