May 29, 2020 Blogs

How could anyone afford that?

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.


Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.