Update on the KAN-101 drug trial and why it’s no fun to be unusual sometimes.
I don’t qualify for the KAN-101 celiac drug trial. Since traveling to Miami to undergo the screening, I waited for confirmation of my Sept. 8 infusion appointment, 21 days after which I would, in theory, be able to eat gluten (bread!) with no ill effects for an as-of-yet-undetermined mount of time. When I saw the doctor’s cell number on my list of missed calls, I got excited. Very. Excited.
Dr. Saltzman’s voicemail, however, gave me pause: “I need to talk to you about your bloodwork.” No one wants that call from a doctor. I called him back and he gave me the not-great news: While otherwise healthy, I have the wrong celiac antigen in my blood and do not qualify for the trial. Which also means if and when this drug gets approval, it probably won’t work for me. The conversation went something like this:
Doctor: No one is more disappointed about this than I am.
Me: Oh, I highly doubt that.
Then I hung up the phone and cried. The Gabber office is about as big as a closet, so my staff had already figured it out. And yes, I know people have far worse health problems than “can’t eat bread,” but that does little to help my particular disappointment.
The wrong antigen — HLA-DQ8 — is uncommon in people with celiac. Really uncommon. My friend, colleague, and scientist-by-training Jen Ring explained it all to me in gentle, no scientist terms. The long and short of it is this: Five percent of celiacs have HLA-DQ8. As only one percent of the population has actual celiac, that means I have something that impacts five percent of one percent of the population, or: one-half person per thousand has the same genetic makeup of celiac and antigens.
This should have shocked me. Years ago, I learned I didn’t have the same RH factor as either of my parents. Rare, but not impossible. This, incidentally, prevented me from getting a specific treatment for an immune disorder (doctors now believe my undiagnosed celiac may have triggered that disorder) so instead of getting drug therapy, doctors removed my spleen.
And *why* did my celiac go undiagnosed? Because, friends, I have silent celiac, which — you guessed it — doesn’t happen that often. I didn’t have traditional symptoms.
The moral of this story? I really should look into PowerBall as a career strategy.