Last month, members of the Colorado General Assembly introduced a bill intended to lower prescription drug costs in the state. The legislation (Senate Bill 21-175) would create a Prescription Drug Affordability Review Board to set payment caps on drugs deemed to be unaffordable. The limits would apply to all healthcare payers in the state.

Most reasonable people agree that the prescriptions drugs should be affordable and accessible. However, anyone concerned about the needs of patients – particularly those with serious or chronic conditions – should be wary of the approach taken in this bill. Quite simply, the legislation is rife with issues that, if enacted, could end up doing real harm to patients.

Where to begin?

For starters, the review board, as envisioned in the latest amended version of the bill, would exclude patient perspectives in making price determinations. The bill requires every board member to “have an advanced degree and experience or expertise in healthcare economics or clinical medicine.” But there is no requirement that anyone on the board have experience dealing with patient-reported outcomes, patient advocacy, or any other expertise that could a patient’s perspective to the board.

It should go without saying that patients’ views on the cost or value of emerging treatments will often be different from those of clinicians or economists. Yet, under the Colorado bill, the review board could set pricing limits – and effectively deny coverage for new and innovative drugs — without considering the views of a single patient, patient advocate, or caretaker.

That is a big problem.

The bill would also give the board overly broad authority to determine what methodologies it will use to make value and pricing determinations. The only factors they must consider are:

1) The cost of administering or dispensing the prescription drug

2) The cost of distributing the prescription drug to consumers in the state

3) Other relevant costs related to the prescription drug

None of those factors speak to the impact a drug can have for patients. For example, the bill does not require the board to consider whether a drug is curative or life-extending. They also would not have to consider the impact a drug might have on a patient’s quality of life. All these factors – and many others – are critically important for patients, yet they go unaddressed in this bill.

Finally, the bill does not have adequate safeguards to prevent outcomes that might have a disparate impact on underserved populations. While it does contain provisions to help ensure the review board receives input from a diverse group of advisors, it does not require the board to consider the impact their conclusions might have on underrepresented communities.

The shortcomings in the Colorado bill illustrate a broader problem in the ongoing public debate over drug pricing: A hyper-focus on cost with little concern for value.

In some instances, giving a patient access to a newer – and perhaps more expensive – treatment can mean the difference between going to work every day or spending days or weeks at a time in bed. For patients with chronic conditions, an innovative new drug might mean the difference between living with unbearable pain or manageable pain. And, for some patients dealing with diseases that have no curative treatments, a new drug could extend their lives long enough for more effective treatments to become available.

Factors like these often get thrown by the wayside when pricing determinations focus mainly on a drug’s price tag without taking the time to consider its value from a real-life patient’s perspective.

Without robust data and input from patient communities, decisions about drug prices, coverage, and access will almost always end up serving the interests of payers – whether its private insurers or government health programs – and clinicians. The predominant flaw in the Colorado legislation – and similar policy efforts being pursued in other states – is the failure to acknowledge that those interests do not always align with the needs and interests of patients.