I always wanted to be an actor. I’m guessing I’m not the first to say that. But it’s true. Starting as a little boy playing dress-up, all the way through the drama program at New York University, the passion never died, and my life plan never wavered. But things never go as planned, especially now that I am 22 and learning how to live without my colon and rectum.
I lived a healthy life for my first 21 years. I enjoyed the outdoors, surrounded myself with social opportunities, maintained an active lifestyle, and indulged myself in the theatre community. That all changed in October 2014 when I was diagnosed with ulcerative colitis, a debilitating, incurable digestive disease. Upon receiving my diagnosis, my doctor started me on steroids and other oral medications, but they did nothing to quell the symptoms wreaking havoc on my body and, after only a short time, I found myself in the emergency room.
Because of my body’s lack of response to my current regimen, my doctor recommended I begin taking a stronger medication, administered intravenously, known as a biologic therapy. Essentially, I was asked to take a drug with a risk of more side effects, but one that would more specifically target my diseased colon. The risk was greater, but the pay-off would potentially be life-saving.
Of course, I was relieved to know there was a treatment option that my doctor endorsed so confidently. After a few weeks though, I was informed that I had to try and fail on other less costly and safer medications before the insurance company would pay for the new drug my doctor suggested. This protocol is commonly referred to as step therapy, but it isn’t therapy at all. Step therapy is a practice in which patients have to fail on less costly medications before the original prescription will be covered.
Reluctantly, I tried the other medications my insurance company required even though my doctor did not think it was the best course of treatment to get me back to normal life. And since each medication takes a certain amount of time before it becomes effective, I dedicated six months of my life to trying it. That was six months of continued symptoms — urgency, bleeding, weight loss, inflammation, and ulceration — causing permanent damage to my colon. Instead of improving and getting back to normal life, I fell further down the rabbit hole of my disease, becoming a shell of my former healthy self.
Over those six months, I became homebound from my disease. I put my life on hold after college and missed my own graduation. Socializing became conversations with my mother through the bathroom door. Enjoying the outdoors was reduced to merely sitting on my back porch, afraid to be more than a few steps away from the toilet. The fulfillment of acting on stage was no longer part of my life. I physically and mentally transformed into someone who was unrecognizable to both my loved ones and myself.
By the time the medical therapy my doctor originally prescribed was approved for coverage, my colon was in bad shape. I spent 15 weeks on the treatment, but saw no improvement — the damage that was done was irreversible. Having not responded to any of the medications, I realized that I would need to take a drastic measure. In August 2015, my colon was surgically removed and I began life with an ostomy bag. In November, my rectum was removed, and in February of this year, my ostomy was reversed. During that surgery, the end of my small intestine was reshaped into an internal pouch to take the place of the organs that were no longer part of me.
Now that my surgeries are over, I often wonder if I had been allowed to follow my doctor’s earliest medical direction, would things be different. Had I been allowed to take the recommended biologic sooner, would I have had to endure all the pain, struggle, hospitalizations, and other drugs? These questions haunt me as I realize what my body went through before I finally obtained coverage to take the drug my doctor initially intended to use in my treatment. And though my colon and rectum are no longer part of me, there are imprints on my body that will always remain from ulcerative colitis: scars from surgery, steroid-induced cataracts from prolonged use, loss of bone density, and the mental and emotional anguish that continue to be part of the work-in-progress to heal.
It’s difficult to talk about the experience, ulcerative colitis, and digestive diseases in general. But people are starting to talk about it more, especially as many realize the true effects that unreasonable step therapy policies can have on patients physically, emotionally, and financially. I am sharing my story so that others with chronic illnesses will not have to be subjected to this kind of step therapy as part of the medical decision-making process.
Lawmakers in Massachusetts are currently considering passage of HB 791, a bill that would put prescribing back in the hands of doctors and support patients seeking the right medication to treat their condition properly, in a reasonable time frame. HB 791 doesn’t ban step therapy; instead, it would give doctors a better way to appeal step therapy requirements to get coverage approval for the right medication right away, and it would ensure that step therapy requirements align with clinical guidelines. And Massachusetts isn’t alone. Other states are taking action to curb step therapy due to the cries of patient and the medical communities around the nation.
To me, this just makes sense. I want my doctor making medical decisions for me and other patients based on therapeutic benefit without third-party intervention. I urge the Massachusetts Legislature to pass HB 791 before the end of this legislative session. I hope that others won’t have to suffer at the hands of step therapy as I did.
Eitan Kling-Levine lives in Newton.