As someone living with a complex and autoimmune form of arthritis, I understand the importance of access to affordable and effective treatments. For years, I endured debilitating symptoms – severe pain, fatigue and inflammation – before finding a medication that improved my quality of life. My experience highlights the crucial role of patient access to effective medication and renders the current policy process on prescription drug “affordability” in Colorado personal and consequential. In its current form, what the Colorado Prescription Drug Affordability Board (PDAB) is doing to address drug prices won’t benefit patients.

In recent years, Colorado and other states have established PDABs to analyze drug prices and propose strategies to reduce out-of-pocket costs for patients. Supporters of PDABs have depicted drug price reviews as a guaranteed pathway to direct cost savings for all patients in that state. This sounds amazing – who wouldn’t want lower cost drugs and less out of pocket expenses? But the reality is these boards were established without much thought to how the process would work, how long it would take to do right, and the importance of including patients at every step in the process.

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In our current health care system model savings are frequently absorbed by pharmacy benefit managers (PBMs) during drug price negotiations, effectively denying any potential financial relief for patients and creating significant affordability challenges for patients when they access their medications.

The recent and ongoing affordability reviews by Colorado’s PDAB for crucial medications, including Enbrel, Cosentyx and Stelara, carry profound implications. Last month, the board deemed Enbrel, a biologic for autoimmune diseases, unaffordable and recommended capping the price, which is not a cap on what patients pay out of pocket, but rather a cap on what is paid by the state and public insurers. Setting an upper payment limit (UPL) on Enbrel or any other medication is unlikely to directly benefit patients, and in fact could harm patient access if there is not enough money left for the pharmacy to afford to stock the medication or for the doctor to prescribe it. Furthermore, in a case where Enbrel remained on an insurers formulary and was accessible, those patients who are stable on other drugs could be forced to non-medically switch to Enbrel, something we’ve fought against for years.

AiArthritis was surprised by the high number of patients in Colorado who reported Enbrel unaffordable. After taking a closer look at the PDAB’s assessment of Enbrel, our team identified concerning methodological flaws that undermined the validity of the board’s conclusions, including deficiencies in survey design, improper consolidation of data, and a failure to contextualize responses regarding perceived medication affordability. These oversights compromise the integrity of the findings and raise doubts of not just this assessment but all Colorado PDAB drug reviews.

To its credit, the Colorado PDAB initially acknowledged these shortcomings and paused the distribution of affordability surveys for additional medications. However, the board ultimately decided to proceed with the survey as is, focusing on participation recruitment and revisiting design in the future.

Behind the data are real people like me, a Cosentyx patient whose life hinges on access to innovative treatments. I urge the Colorado PDAB to respect the expertise of patients in its affordability assessments and collaborate with them to achieve our shared goal of ensuring medications remain available and accessible.

Though action to address high drug costs is necessary, imposing price controls alone won’t ensure any cost benefits for the intended patients. What PDABs should focus on is identifying true unaffordability issues for all consumers in their state and zeroing in on known causes – such as insurance protocols that don’t allow drug manufacturer copay assistance, PBM transparency and the 340B Drug Pricing Program.

Colorado patients deserve policies that benefit those who genuinely need life-changing medications – not create more opportunity for middlemen to exploit programs meant to improve access.

Tiffany Westrich-Robertson is the chief executive and co-founder of the International Foundation for Autoimmune & Autoinflammatory Arthritis.