My name is Karolina and I live in Boston, Massachusetts. I am a journalist, the editorial director of a Boston art collective called Hourglass, a skincare and ethical fashion fiend, travel fanatic, and since the age of 10, I have also been living with Crohn’s Disease.
When I was first diagnosed with Crohn’s, I spent years at different hospitals and went through an array of tests to try and pinpoint the cause of my symptoms. After a misdiagnosis, I went untreated for around 13 years. In 2015, I was hospitalized for a flare that would re-diagnose me with Crohn’s Disease and change my life forever. Along with Crohn’s Disease, I have suffered from severe chronic migraines, arthritis, sacroiliitis, fibromyalgia, psoriasis, and chronic pain for as long as I can remember.
Not only have I had to deal with the pain and discomfort of living with these chronic conditions, I have also had to cope with the financial implications due the cost of the drugs I need to live my life with Crohn’s disease.
Something they don’t tell you when you’re diagnosed: You may not be able to pay for your treatment. I am fortunate enough to have great insurance coverage, but I still remember the day I received a bill for a chemotherapy treatment I received.
It was for $100,000.
The number hit me in the chest. How could anyone afford that? I keep this bill as a reminder: The prescription drug pricing system is broken. Every diagnosis anniversary, the reminder of needing to fight so desperately for the medication I need to live comes crashing down like an anvil. I live at the mercy of drug corporations.
It is unfair that anyone should have to wonder if they can afford to live. I have been a patient advocate for a few years now, but I am eager to get involved in the fight to lower prescription drug costs. The system is unacceptable and it is time for change –– now.