I was 17 years old when I experienced my first ulcer.
Imagine being a junior in high school, writing and directing your third-straight one-act piece and having to deal with uninterested jocks posing as actors, sorority girls in training going after those jocks and a lead actor who cannot remember any of his lines the weekend before the show opens.
I was a serious kid, perhaps a little too serious, but I refused to allow the real life drama of “Central Peel, 90210” to interfere with my vision. That show wound up being my most acclaimed, winning nine awards for the Sears’ Ontario Drama Festival, including outstanding production, but I paid the price with the salty taste of my own blood.
Fast forward 17 years later. For those that know me personally, I have been diagnosed with Crohn’s disease, one of 700,000 in this country who suffers from this ailment. To say the past two and a half years since my diagnosis have been on the hellish side would be an understatement.
I have had issues with my stomach for half my life, and quite frankly, I am sick and tired of being sick and tired. I am sure others with Crohn’s share my sentiment. Raw vegetables? No more. Delicious (and already unhealthy enough) fried food of any kind? Not for me.
Named after Dr. Burrill B. Crohn, who first described the disease in 1932 along with colleagues Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, Crohn’s disease belongs to a group of conditions known as Inflammatory Bowel Diseases (IBD). Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract, commonly affecting the end of the small bowel and the beginning of the colon. But the disease may affect any part of the gastrointestinal tract, from the mouth to the anus. In my case, the disease mainly affects my upper GI tract.
My cousin also has Crohn’s. Upon my own diagnosis, I was scared. My cousin has a severe case, and I’ve observed him go through disability, weight fluctuations and surgeries that culminated with the removal of a significant portion of his small intestines. Is this my future?
Two years ago, I had to undergo a colonoscopy from my gastro doctor to confirm my diagnosis. I was 32 at the time, and it was not my first. I was first prescribed Pentasa and instructed to take it four times a day. My feelings of pain and discomfort seemed to be a thing of the past, until I passed out two weeks later.
That led to my first major trip to the hospital, where I realized the staff, through no fault of their own, would be unable to assist me because my disease is basically seen as nothing more than a severe case of gas and heartburn. I heard, “Take Imodium, it will help." Temporarily. At one point, I was taking up to 24 pills a day to treat not only my disease but the side effects of the disease.
Every eight weeks, I head over to the gastrointestinal doctor to be pumped with a medication called Remicade, also known as Infliximab, an artificial antibody via IV. Those who follow me on Facebook have seen the pictures. I look like a puppet that is trapped in the Matrix. Remicade was originally developed in mice as a mouse antibody. Because humans have immune reactions to mouse proteins, the mouse-common domains were replaced with similar human antibody domains.
Because the antibodies were produced from one cell grown into a clone of identical cells, it is called a monoclonal antibody. Because it is a combination of mouse and human antibody, it is called a chimeric monoclonal antibody. Did you catch all that? I’m dizzy from researching that, and I’m even dizzier writing it.
The craziest thing is that this drug so far has been the only one that has helped alleviate some of my discomfort.
But what really ties my stomach into knots? Remicade can cost anywhere from $19,000 to $22,000 a year per patient, wholesale. For me, it is covered under major medical insurance (rather than prescription drug insurance), but try to make a case to someone who needs this and cannot afford it.
I will be blunt: I am Canadian, so I like and will defend our health care system to the death. I do understand that the Canadian system would not work in the United States, simply based on population. There are 10 times more people that live in the U.S. But $22,000 for a treatment that affects close to a million of us? That’s the price of a car. That’s the price of some houses.
I think my health is worth more than a car. The question is at what point do we see our health as priceless, and what could (or should) be done to bring down costs to individuals who need treatments so they do not have to take out a second mortgage? I do not have the answers myself, but I do understand that the question needs to be asked.