An Oregon patient has rheumatoid arthritis. It’s so acute he can’t hold the tools of his profession. A doctor prescribed Humira. The shelf price is $7,000 per month. It helped him. He didn’t have to miss work.

Then he got a bill from a specialty pharmacy for close to $8,000, an amount he thought he wouldn’t have to pay. He had to go without taking the drug for three months, trying to find a way to cover the cost. He was eventually enrolled in a program to get the drug for free for the rest of the year.

Another patient with the same condition had been on Cimzia for two years, which has a shelf price of $6,000 monthly. She got a new job, which means new insurance. Her new job wouldn’t authorize her to continue on the drug, because they wanted her to try other medications. She faced a choice: family or pain. She and her husband had considered starting a family. Cimzia is the only medication FDA approved for rheumatoid arthritis when nursing or pregnant. She may be able to get into the manufacturer’s free drug program and bypass her insurance.

Tara Stafford, patient access coordinator at St. Charles Rheumatology in Bend, shared these anecdotes of anonymized patients Wednesday, speaking at the state’s annual public hearing on prescription drug pricing. Stafford helps patients navigate their prescriptions.

“I say navigate as if the path is clear,” she said. “It is more like a labyrinth.”

What Oregonians know about prescription drugs is that they are expensive and dealing with insurance can be baffling. The hearing Wednesday was to examine what else the state knows and doesn’t know and what it might do.

Oregon’s prescription drug transparency law requires drug manufacturers “to annually submit a price increase report for any of their drugs with a list price of $100 or more for a 30-day supply or a shorter course of treatment that experiences a net price increase of 10% or more from the previous year.”

It’s to build up knowledge of how the prices work, why the prices can be high and why consumers end up paying so much. Oregon may then put in place price controls or other regulations to try to hold prices down.

The Pharmaceutical Research and Manufacturers of America sued. Earlier this year, a federal court in Oregon said the act violates the First Amendment. That means it’s unenforceable. Oregon has appealed.

It means, for now, Oregon’s Drug Price Transparency Program is hamstrung by a lack of drug price transparency. State staff can’t compare drug price increases to inflation, it can’t compare generics and brand name drugs, it can’t track trends over time. There’s still much they do know and a panel of legislators were on hand Wednesday to listen to staff members of the program, a set of representatives from the industry, public interest groups and researchers.

The most interesting discussion was perhaps over drug advertising. Advertising for drugs on social media or by brick and mortar businesses can escape regulatory controls. But that’s more of a federal regulatory issue than an Oregon issue.

Staff from the state’s program also made a series of recommendations, including expanding Oregon’s bulk purchasing authority, centralizing Medicaid purchasing and centralizing pharmacy purchasing.

Rep. Emerson Levy, D-Bend, one of the legislators at the public hearing, asked for more details about expanding bulk purchasing authority. What states do it? What advantages have they found?

California does it. It can even manufacture its own drugs. For instance, it began its own initiative to manufacture insulin to keep that price down.

We do have a small quibble with Wednesday’s public hearing. Scheduling a public hearing in the middle of the workday is practically a guarantee that the only people able to participate are those that get paid to participate. We don’t expect a flood of Oregonians would be participating if it was scheduled outside the normal workday window. But it seems to us it is the government scheduling things when it is convenient for the government and its panelists, not for the public.

Staff at Oregon’s Prescription Drug Program will read any comments that people send in. Any time a public hearing is scheduled, it will exclude somebody.

So, like we said, it’s a small quibble.

If you want more information, you can find it here: tinyurl.com/drughearing.