Oregon should force Big Pharma to fork over pricing info: Guest opinion

By: David Mitchell

Joel Rosenblit of Salem faces a future that includes not only fighting a rare form of lymphoma, but $10,000 in co-payments on a new cancer medicine he'll take to stay alive.

Dody Hartzler works hard to keep her expenses down, but the Jacksonville resident has no control over the price of her inhaler, which is $175 every time she needs a refill. That's up from less than $50 a few years ago. 

Debbie Kendall lives with diabetes. The Troutdale resident has had to choose between making a house payment and purchasing insulin, landing in the hospital with an infection after picking the house payment.

I have incurable blood cancer. To stay alive, I took $450,000 worth of drugs last year.

I know firsthand that medicine does more than extend life. It props up the human spirit. It gives us hope. Big Pharma trades on our hope -- exploits it -- selling medicine at prices that defy imagination and induce anxiety, despair, ruin. 

To fight back, my wife and I began an organization called Patients for Affordable Drugs. We've collected thousands of stories from Oregon and all across the country. The stories are about human suffering under outrageous prescription drug prices. On behalf of the 188 Oregon patients who have reached out to us directly, we strongly support Oregon's latest push to pass state legislation that will lower drug prices for people like Joel, Dody and Debbie.

The Prescription Drug Price Transparency Act, or House Bill 4005, would shine a light on the shadowy pricing process, giving consumers critical information about which drug companies are raising prices in Oregon. Its principal sponsor is Rep. Rob Nosse, a Democrat from Portland. The bill has already gained bipartisan support ahead of Oregon's short 2018 session.

Under the proposed legislation, if a drug corporation wants to raise the price of a drug by more than 10 percent a year, it must provide detailed information on that drug to the Oregon Department of Consumer Business Services. That would include everything from its name, price and length of time on the market and the top 10 highest prices paid for the drug in other countries. The company would also have to report its total sales and profits for the previous year.

The public has a right to know so we can continue to tackle reforms necessary to fix a broken system that is hurting patients and inflating health care costs for everyone. Prescription drug spending now accounts for nearly 20 percent of all health care costs and is expanding faster than any other part of the health care dollar.

Oregonians have told us how they're juggling the basics to manage skyrocketing drug prices. Patients report they can't afford both medicine and groceries, or the mortgage, a tank of gas, a medical check-up, the electric bill or small gifts for their grandchildren. And the list goes on and on.

Patients for Affordable Drugs supports a broad coalition including Oregon nurses, teachers, labor unions, patients, insurers and health systems joining together to fight for lower drug prices. Together, we  envision a world in which governments and consumers can stock an intellectual armory with actionable information the pharmaceutical industry would rather keep secret. Information is one weapon we'll wield to beat back against price gouging by Big Pharma, which spends millions lobbying to protect its profits.

The greed has produced results, and not the kind the industry likes to talk about at annual board meetings. For instance, one in four people with direct experience with cancer reported that either they or a loved one refused treatment, postponed or didn't refill a prescription, cut pills in half or skipped doses, according to the American Society of Clinical Oncology. 

Dody Hartzler, a 73-year-old retired retail worker, has thought a lot about all of this from the fifth-wheel trailer she parks at a friend's property to save money on living expenses so she can afford her prescriptions.

"I would like to know why they do this to the public," she asked, "why in the world are you that greedy?"

She deserves an explanation, and HB 4005 would give her one.

David Mitchell is a relapsed cancer patient with incurable multiple myeloma and the founder of nonprofit Patients for Affordable Drugs Now. He lives in Bethesda, Md.