In January 2006, I was diagnosed with chronic myeloid leukemia. Never could I have imagined that I would be a 25-year-old living with cancer.
I’d soon find out that it wasn’t the leukemia itself that was burdensome; it was the unexpected cost of managing a chronic illness that led me astray. You won’t read that in the doctor’s notes. That’s something I had to learn the hard way. I wasn’t prepared.
When you’re diagnosed, nobody tells you how difficult it will be to manage a chronic illness…I was no exception. “That will be $125,” the pharmacist said.
Picking up prescriptions was always a guessing game. I never knew how it worked. In fact, the only thing I knew about insurance was that I was covered.
“OK, that seems like a lot of money,” I replied.
“The original cost of the medicine, without insurance, is $3,400,” she responded.
“Dollars?” I asked. I handed over my debit card as fast as I could.
I was taking Gleevec, 400 mg daily; one pill a day. “Easy enough,” I thought. In fact, it was easy, for the first seven to eight months. Then I began to compromise. I had to.
It was easier to pay for my medicine every third paycheck as opposed to every second. I felt ashamed, guilty and embarrassed, but it gave me a lot of freedom. At the time, I needed that.
Pushing my diagnosis aside
For the most part, stretching my medicine worked well. Physically, I still felt good. In fact, I’d often forget that I had leukemia. I wanted to be young, carefree and not have to worry about managing an illness.
As a result, I often pushed my diagnosis to the side. Instead of being deathly afraid of what could happen if I didn’t manage my illness correctly, I became deathly afraid of what could happen if I did manage my illness correctly, but never experienced the fullness of my youth. I was too immature to realize that I needed to figure out a way to do both.
The more I stretched my medicine, the less guilty I felt. Soon, I embraced the invincibility that provided more financial flexibility. Two or three weeks without medicine was not uncommon.
I then did the only thing I could do — base my illness on how I felt physically, as opposed to how everything was measuring up scientifically. My mind had betrayed my body and my body would soon betray my mind.
In August 2008, I moved to Dallas from a small town two hours north called Wichita Falls, Texas. I tried to find a new oncologist at Baylor Medical Center, but they refused to treat me because I had a patient history of being non-compliant. I had no idea that I could even be refused as a patient.
I also had no idea that I was considered “non-compliant.” Sure, I had missed a couple of appointments and spent an afternoon in the emergency room as a result of not taking my medication, but it was never a case of having medicine and not taking it. It was instead a matter of not being able to afford it in the first place.
Fears came true
My world was turned upside down. After years of fighting hard to be normal, my fear of being labeled came true. Not only did I have leukemia, I now had the stigma of being non-compliant.
A few days after being rejected by Baylor, I was accepted by Southwestern Medical Center in Dallas. It was there that I faced the realities of my illness and coordinated plans to talk with the social worker about how I could receive the financial help that I needed.
It was a big step in the right direction. I finally felt empowered. All it took was a little assistance.
It wasn’t until my time at UT Southwestern that I truly understood the significance of patient compliance issues, particularly with young adults. I wish I had known all along. It may have cured the false belief that I was controlling my situation.
Now, I can’t help but wonder if it was the inconsistencies in my medication habits that led to a recent discovery of a t315i mutation, which will prevent all known FDA approved medications from working. Perhaps I’ll never know.
What I do know is that there’s no greater issue to tackle in the field of medicine than patient compliance. As a patient, I understand the struggles of having good intentions without having the strength to carry them through.
It’s like walking into the gym and trying to lift a weight you’ve never lifted before, just to impress the prettiest girl in the room. Without a spotter, or someone to help you lift the weight, it will soon come crashing down. Nobody is capable of lifting the weight of cancer on their own.