• April 4th, 2025
  • Friday, 12:05:05 AM

Colorado Bill Could Offer a Lifeline for Patients Like Me 


 

John Christen

Posted April 3, 2025

 

At first glance, you wouldn’t know it, but I have a rare, life-threatening genetic condition.

 

I was born with severe hemophilia, a disorder that prevents my blood from clotting properly. Without medication, my joints swell uncontrollably, my elbows, knees, and ankles becoming the size of cantaloupes. The increase in pressure due to blood flooding the joint cavity results in unimaginable pain and permanent damage to my joints. Without medication, my life expectancy is just 25 years old.

 

But with access to life-saving treatment, my reality is completely different. I am a devoted husband and father. I’m a college graduate — Go Buffaloes! — and a former educator, having taught science to at-risk youth in Denver and Aurora public schools. I love Colorado’s great outdoors, and, at 40 years old, I am thriving. But that is only because I have access to the medication I need.

 

House Bill 25-1094 will hold pharmacy benefit managers accountable and rein in the sky-high costs of prescription drugs. PBMs are middlemen in the drug pricing system, quietly working behind the scenes but exerting enormous influence over the cost of our medications. They were originally created to help reduce drug prices, but today they profit by jacking up prices instead of passing savings on to patients. While it becomes harder and harder for patients like me to afford medications, PBM profits have skyrocketed by 438% over the past decade.

 

I have lived through the consequences of this broken system. I have been denied access to the medication I need. I have been told to try and fail on less costly treatments — medications that simply won’t stop the bleeding. The uncertainty and stress that come with fighting for access to treatment take a toll, not just on me but on my family as well.

 

Colorado has an opportunity to stand up for patients and ensure that no one has to suffer or sacrifice their future because of an unjust system.

 

I am far from alone in this struggle. Millions of Americans with chronic conditions — whether it’s hemophilia, multiple sclerosis, arthritis or epilepsy — face the same uphill battle against an industry designed to maximize profits at the expense of patients.

 

The bottom line is simple: PBMs should not be allowed to profit off higher drug prices. HB-1094 would change this by requiring PBMs to operate with transparency and prioritize savings for patients, rather than padding their own bottom lines. The bill would ensure that PBMs make money from a transparent, flat-dollar service fee instead of a percentage of the drug’s price, removing the incentive to push for higher costs.

 

For patients like me, this is not just a policy debate — it’s a matter of life and death. If I lose access to my medication, I lose everything. I am living proof of what happens when people with chronic conditions receive the care they need: We contribute to our communities, our families, and our state. But when that care is out of reach, the consequences are devastating.

 

Colorado has an opportunity to stand up for patients and ensure that no one has to suffer or sacrifice their future because of an unjust system. HB-1094 is not just about reforming PBMs — it’s about making sure every Coloradan has a fair shot at a healthy life.

 

John Christen is a teacher living in Aurora and an advocate for people with bleeding disorders. This commentary is republished from Colorado Newsline under a Creative Commons license.