Oregon needs to listen to its patients

More than half of Oregonians are living with at least one chronic health condition. One in four adults has a disability, and around 20,000 people receive a cancer diagnosis each year.

Right now, our state is making critical drug pricing decisions that could make it harder for these patients to access the care they need. And it’s doing so without even giving them a seat at the table. 

Oregon is one of eight states that have opted to create a new regulatory body to assess whether medications are priced fairly for patients. Our Prescription Drug Affordability Board has the authority to analyze the costs and benefits of certain drugs. If the board decides a medication isn’t worth the cost, it can impose a cap on how much the state will pay. 

In theory, the board is supposed to make prescription drugs cheaper – a goal all Oregonians can rally behind. But so far, its six appointees are operating with little connection to affected populations, shunting patients and clinicians aside. 

Despite calls for increased transparency from Oregon patients and the disability community, the board seems determined to operate without robust patient engagement. That’s especially concerning because there is so little statutory specificity with regard to its operation and determinations.

For example, there is currently no requirement that the board refrain from using flawed methods for pricing drugs, and if the board’s members decided that a drug didn’t offer enough clinical benefit to patients to justify its cost, its decisions could end up limiting the treatment options available to help vulnerable patients, including those living with rare diseases or conditions like ALS, also known as Lou Gehrig’s disease,  a fatal illness with few federally approved treatments and no known cure. 

At the federal level, lawmakers and regulators have raised concerns about flawed metrics, such as one that takes account of the quality of life a patient faces, saying they can discriminate against people with disabilities and prevent doctors from providing the best possible care. 

The disability community deserves much of the credit for exposing the discriminatory nature of that metric and similar measures of cost-effectiveness that discount the value of a treatment for people with disabilities. But since Oregon’s board doesn’t have a single representative from the patient or disability community among its ranks, its members could easily default to using these unfeeling, inhumane analyses in their decision-making process. 

As someone who has spent my career fighting for patients, I am deeply saddened by this situation. No amount of formal training or education can make up for neglecting the perspective of someone living with a chronic illness or navigating the world with a disability. 

It’s disappointing that both state law and the board’s discretionary authority have failed to prioritize sincere engagement with the patient community and clinicians. The human side of the issue is harder to ignore when present in the room.

In Colorado, by contrast, the state’s Prescription Drug Affordability Board has held meetings with patients and health care providers for each of the drugs under review. Colorado also formed an advisory council of patient advocates and other stakeholders to work alongside the board to give voice to vulnerable populations directly affected by its decisions.

Every Oregonian deserves unrestricted access to treatments and medicines that can help them live a full life. Physicians should have the resources they need to develop the best treatment plans for their patients – without having to navigate additional complexities created by state pricing schemes.

Listening to the viewpoints of the patient and disability community would provide a much-needed reality check on board decisions. The result would be better patient outcomes, a healthier landscape for medical innovation and improved relations between providers and state regulators. 

The board just needs to open the door.