October 7, 2020 Blogs

Patients like me have to plan our whole lives around the costs.

My name is Kaitlyn May and I live in Plattsburg, Missouri. When I was 15 years old I was diagnosed with ulcerative colitis and primary sclerosing cholangitis (PSC), a chronic, long-term disease that affects my liver. After spending two and a half years trying to determine my diagnosis, I mostly focused on the health side of my condition. I wasn’t focusing on the costs of treatments until I transitioned to adult care. That’s when I started to realize the extent to which the cost of medications and treatment would direct some of my biggest life plans and decisions.  

My condition advances slowly, but since there is no regular path for patients to advance through the four stages of PSC, I have to constantly be thinking about hypotheticals. Over the 15 years since my diagnosis with PSC, my condition has advanced from phases one to three. I’m left unsure of when I will advance to the fourth stage and whether my liver will ultimately fail. Many people living with PSC end up requiring a liver transplant when their condition progresses to the fourth stage.

Though I currently am not on any regular prescriptions, I have to be prepared to take several prescriptions when I have flare-ups. When I have these unexpected flare-ups I take Ursodiol and prednisone which cost over $75 for the regular supply. The unexpected nature of when I could need these medications complicates my ability to plan around the cost.

Because of this uncertainty around my conditions and the impending cost of drugs and treatment associated with it, I constantly have to think about the “what-if’s.” Planning ahead allows me to ensure that I’m in a situation where I’m as prepared as possible for the worst-case scenario. Over the past 15 years since my diagnosis, my conditions have impacted some of my most important life decisions from where I’ve been able to live to which jobs I’ve been able to keep. There have been plenty of times where I’ve had to move home, either when I’ve been sick, lost my job, or been on short-term disability leave.

I shouldn’t have to be constantly planning so many steps ahead because of how costly it may be for me to get the prescriptions and treatment that I need. Because of the greed and high prices of medications, patients like me have to plan our whole lives around the costs we could face if something happens. We need change now that helps patients afford their prescriptions –– and that brings peace of mind to millions of patients like me who are planning every day for what will happen if their conditions worsen or they lose access to their insurance. We shouldn’t be living in fear that one bad break could lead us to financial ruin.


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