As a child, I was diagnosed with multiple autoimmune arthritis disorders. Rheumatoid arthritis, lupus, and Sjogren's being the primary three. Later, I was diagnosed with hypermobile Ehlers-Danlos Syndrome, dysautonomia, a C1 spinal cord injury, and a recently added traumatic brain injury. My rheumatoid arthritis (RA) and Ehlers-Danlos (hEDS) are the most pathological.

Many don’t realize RA can be fatal in severe cases. It is one of the top diseases that causes disability and is cruel. In addition to attacking joints, it also attacks organs and soft tissue. Despite having RA since childhood, this year I’m blessed to turn 50. Thankfully, I found a working therapy that controls my aggressive rheumatoid arthritis. Unfortunately, 7 years ago, I lost access. Over the next 6 years, my entire body broke down. There was no part spared. Because I lost my working therapy, I now need 6 surgeries. In January, I had neurosurgery to fix atlantoaxial instability that was almost fatal, and I still need 5 more surgeries that I’m not sure my body can survive. I went from hiking in our beautiful Colorado mountains to losing use of my arms and needing a wheelchair. My spine is collapsing because my diseases accelerate spinal degeneration. I spent several years in bed unable to participate in life or work. Literally, my entire body just broke.

At the beginning of 2023, I was able to get my medication again. Out of all the medications, even similar ones, this is the only one that works. I’ve tried them all. I am now walking again and I’m working. I’m not a drain on resources because I have access to my treatment. No new damage has occurred since restarting my medicine, which means no new surgeries needed. All of the surgeries I have needed were as a result of the loss of access.

This said, I’m sure you can understand my sheer terror over PDABs and reimbursement caps. These reviews won’t directly benefit me and threaten to throw my body back into a dark place. If my specialty pharmacy can’t get reimbursed for what it costs to get the medication, they won’t stock it. If my medication gets a reimbursement cap, the rebate program I use to access the medication will disappear. If the false perception of having “similar, cheaper alternatives” makes me switch to an alternative that I already know doesn’t work, I’m going to die.

I’m terrified of the future. Colorado is playing doctor, trying to slap a “one size fits all “ solution on a complex problem. For the entire year, I paid less than $300 for my medication. This is incredibly reasonable and affordable. I’m not unique in that either. Most people don’t pay excessive costs for their biologics.

I can afford to lose my medication again and neither can any other Coloradan. The costs could be staggering if we cannot maintain our continuity of care. Increased dependence on Medicaid, more hospitalizations, and losing the ability to work could cost Colorado millions, way more than it could save by limiting insurance options. Do the right thing. Protect access to life-saving medications.