Originally published as an op-ed in Colorado Politics
On Friday, the Colorado Prescription Drug Affordability Board (PDAB) voted to set an Upper Payment Limit (UPL) on Enbrel, a medication relied upon by thousands of people living with autoimmune diseases. This is not a technical adjustment; it is a life-altering decision that calls into question whether patients will continue to have access to the drugs that keep them stable, functioning, and alive.
Across the country, Americans are watching institutions wrestle with declining public trust. Too often, decisions appear to be made without transparent data or without giving communities a real voice in shaping outcomes.
Colorado’s PDAB was created to be an antidote to that problem: a body designed to bring sunlight, fairness, and patient perspectives to bear on the complex question of drug affordability. Instead, its recent actions mirror the very dynamics that have undermined trust at the federal level.
By moving patient comment to the end of the agenda, the Board sent a clear and chilling message: patients’ lived experiences are not a priority. And by setting a UPL without a clear system to collect baseline data or monitor outcomes, the Board has substituted speculation for science.
For patients with lupus and other chronic diseases, this is not a theoretical concern. It is about access to the medicines that keep them out of the hospital, able to work, and alive. Without transparent data, ongoing monitoring, and meaningful public engagement, Colorado could repeat the same mistakes that have plagued national policy—well-intentioned but misguided actions that ultimately harm the very people they aim to help.
Colorado lawmakers have an opportunity to change course. The legislature should insist that PDAB operate with transparency and scientific integrity, not only because the law requires it, but because patients deserve nothing less. Public input must come before deliberation, not after it. Monitoring systems must be built before limits are imposed, not bolted on afterward. And the Board must ensure that any savings generated flow directly to patients, as the statute clearly intends.
Trust in public institutions does not erode overnight, and it will not be restored overnight. But it can start here in Colorado by reaffirming that evidence-based policymaking and true transparency are not optional. They are the foundation of legitimacy.
Patients battling complex illnesses should not have to fight their own government for a fair process. If Colorado truly wants to lead on drug affordability, it must also lead on restoring public trust. That begins by putting patients first, science front and center, and transparency back where it belongs: at the heart of decision-making.