January 5, 2021 Blogs

Our system needs to change.

My name is Kip Burgess and I am from Chicago, Illinois. Eight years ago, I was diagnosed with an incurable condition called psoriatic arthritis. 

Prior to my diagnosis, I had always felt stiffness getting up in the morning, but hadn’t paid it much attention –– until one morning I woke up and was unable to sit up. Any movement caused intense pain. After calling my wife over for help, it took half an hour for me to stretch out and be able to get up.

After that experience, I went to my doctor to figure out what was causing this intense pain. Though it took a while, my doctor eventually diagnosed me with psoriatic arthritis, an inflammatory type of arthritis that often causes joint pain and morning stiffness. Staying still only increases the stiffness and pain.

A bearded man in a Chicago Cubs hat smiles at the cameraTo treat the constant pain from my disease, I began to take a weekly injection of a drug called Enbrel. When I am on Enbrel, I don’t have symptoms. The day after my first Enbrel shot was the first time in years that I didn’t feel the daily pain associated with my condition. I can now ride my bike or scoop up my 1 year-old daughter totally pain-free. I almost forget I am sick. But I also have to carry the fear of knowing all of this could be ripped away thanks to the exorbitant price of staying healthy.

Enbrel is priced at nearly $6,000 every single month. If my ability to cover those costs goes away, I know I will go back to waking up every morning in pain. 

On top of that, my doctor tells me that because of the way this drug works, missing even one dose could mean the drug stops working for me. If I forget or am unable to access my weekly injection, pain and stiffness already start to return to my hands within a day. These risks cause crippling anxiety on top of the burden of the disease itself. 

In order to avoid these interruptions in my dosing, I’ve been forced to dip into my savings and jeopardize my financial health to preserve my physical health. I felt that I had no choice. And I consider myself one of the lucky ones.

I stress about being approved for the medicine, accessing the special pharmacy where I get my drugs, and getting my prescription all so that I can stay ahead of the costs. My diagnosis –– and the high cost of Enbrel –– has affected my life greatly. The high cost affects the decisions I make and limits which professional opportunities I can pursue. If I lost my employer insurance or started receiving worse coverage, paying the full list price for Enbrel would be unmanageable.

Our system needs to change. Patients like me shouldn’t live in constant fear of the immense costs to stay healthy. We shouldn’t have to be constantly thinking two or three steps ahead to make sure we can both access and afford the care we need.


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