An unelected board in Colorado is set to impose the nation’s first price control on medication, sparking outrage from patients who say their concerns about access to care have been ignored during the rulemaking process.

On Friday, October 3rd, Colorado’s unelected Prescription Drug Affordability Board will consider adopting an Upper Payment Limit for a popular medication that is used to manage rheumatoid arthritis, psoriatic arthritis, and other serious autoimmune conditions.

Patient advocates warn that the nation’s first price control will block patient access to care and sets a dangerous precedent of unelected political appointees overturning a doctor’s treatment decision.

“Healthcare decision should be made by patients in consultation with our doctors, not by a panel of unaccountable and unelected political appointees,” said Terry Wilcox, the co-founder and Chief Mission Officer of Patients Rising. “Colorado’s Prescription Drug Affordability Board is a government price-setting experiment that threatens to limit patients’ access to life-saving medications.”

“Worst of all, this is being done with no guarantee that it will save patients a single penny at the pharmacy counter,” she said.

Colorado Patients Lose Access to Medication

Patient Bridget Dandaraw-Seritt remembers exactly what it felt like to lose access to the medication that kept her autoimmune disease under control.

“In four short years, I went from being able to hike miles to being bedridden,” said Dandaraw-Seritt, a member of Patient Rising’s Patient Senate, who founded the patient advocacy group, Advocates for Compassionate Therapy Now. “I had irreversible damage. I needed multiple surgeries.”

Now, she fears thousands of Colorado patients could face similar devastation as the state prepares to make history — but not the kind anyone is celebrating.

“There is no process for waiving the UPL for those who cannot use any other medication,” she pleaded to Colorado’s PDAB appointees. “Local pharmacies may choose notto stock drugs with UPLs because reimbursementis too risky.”

Patient Coalition: Our Voices Being Ignored

For months, patients have submitted written testimony and shared intimate details of their medical struggles. They’ve warned board members that the price cap won’t lower their costs at the pharmacy counter but will instead trigger a cascade of access barriers that could leave them without access to treatments.

Their concerns, they say, have been brushed aside.

“Patients across Colorado are disheartened by this decision,” a coalition of more than a dozen patient advocacy organizations, including Lupus Colorado, Mamas Facing Forward, and SOCO Special Needs Families, warned in their letter of opposition. “Throughout this process, patients and pharmacists offered clear, consistent testimony warning of the risks UPLs pose to affordability, access, and continuity of care.

“Unfortunately, these voices appear to have been discounted. By moving forward despite this testimony, the Board has signaled that patient, insurer and pharmacist experiences—the perspectives most directly impacted—were not given the weight they deserve.”

A Cap on Reimbursement, Not Patient Costs

Despite its name, an Upper Payment Limit doesn’t cap what patients pay at the pharmacy. Instead, it limits what insurers and the state can reimburse for a medication. The Colorado board has no authority to control patient out-of-pocket costs, and there’s no guarantee any savings will reach patients.

Health plan executives surveyed by Avalere Health reported that 77% believe Upper Payment Limits will disrupt patient access through changes in coverage, drug tiering, and increased cost-sharing. Half of surveyed insurers said they would likely impose stricter utilization management tactics, including prior authorizations and step therapy requirements.

Another emerging concern: if the reimbursement cap falls below what it costs pharmacies to acquire the medication, they may simply stop stocking it.

One-third of independent pharmacists surveyed said they won’t carry drugs subjected to Medicare’s price caps, according to testimony from the National Community Pharmacists Association. For patients in rural areas or those who rely on smaller pharmacies, this could mean losing access entirely.

Ranier Simons of the Community Access National Network explained in written testimony: “If a UPL is set too low, pharmacies would operate at a financial loss, as the acquisition cost of a drug would be higher than the reimbursement from the health plan… if they are not going to be paid appropriately, pharmacies can’t realistically be expected to purchase the medication.”

Non-Medical Switching Hurts Patients

Perhaps the most chilling concern for patients is the practice known as non-medical switching — when insurers force stable patients to abandon a working medication in favor of a cheaper alternative.

For patients with complex autoimmune conditions, the risk is anything but abstract. Finding the right medication often takes years of trial and error. So-called “therapeutic alternatives” are not therapeutic equivalents — each patient responds differently, and switching can trigger disease flares, permanent damage, and a dramatic decline in quality of life.

Pediatric patients may be hit particularly hard. Forcing children onto other treatments could mean more frequent blood work, more doctor visits, and in some cases, intravenous infusions that require hours off school for the child and work for parents.

“Colorado’s price control process has been built on a foundation of bad data, a lack of transparency, and the consistent dismissal of the patient voice,” said Wilcox of Patients Rising. “Unaccountable political appointees should never get between you and your doctor.”

Watch: PDABs Are BadPolicy