Patients, Minnesota legislators push for lower drug prices, more transparency

Claire Henn went without rheumatoid arthritis medication for three years after the price spiked, making it hard for her to even open a door. Dawn Burnfin's 20-year-old daughter accumulated thousands of dollars in debt after relying on emergency room visits because she couldn't afford an antibiotic. James Holt Jr. and Nicole Smith-Holt lost their son because he rationed his insulin.

They were among the Minnesotans who showed up at the State Capitol on Tuesday to back drug price control measures in the House that Democrats say would lower costs and increase transparency in the pharmaceutical industry.

"As the price of drugs in our state continues to spiral out of control and out of reach for too many of us, it is absolutely imperative that we pass legislation that cements control of prescription drug costs solely with those whose health and healing depends on them, and removes it forever from the hands of those who profit from them," St. Paul resident McKenzie Shappell said.

Shappell, 25, said his friends are keenly aware of the costs their next birthday could bring — when they are forced off their parents' health care plans at age 26.

One of the House proposals would prohibit drug manufacturers and wholesalers from charging an "unconscionable price for an essential prescription drug." If the price of critical drugs increases by 15 percent or more in a year, Minnesota Attorney General Keith Ellison's office would be notified and required to ensure the hike is justified.

Another measure would license pharmacy benefit managers — middlemen in the pharmaceutical industry — and require them to operate more transparently. Rep. Alice Mann, D-Lakeville, a family physician, said they often operate in obscurity and require kickbacks from drug manufacturers, passing costs on to customers.

A measure to increase drug pricing transparency also got a hearing Tuesday in the Senate Health and Human Services Finance and Policy Committee. Committee Chairwoman Michelle Benson, R-Ham Lake, said she wants a transparent supply chain that shows how much money pharmaceutical middlemen make. But she raised concerns with some of the price control measures in the Democratic-dominated House.

Rep. Michael Howard, D-Richfield, sponsored a bill that he called a stopgap approach. It would have insulin manufacturers pay a registration fee to the state Board of Pharmacy. The fee, which House research staff estimated could generate more than $10 million a year, would be used to create an assistance program to help people get emergency supplies of insulin.

While House Democrats have focused on insulin, Benson said the Senate is looking at cutting drug costs more broadly. They are moving forward with a bipartisan proposal that would make it easier for people to use coupons and discounts for drugs, she said.

"We have a lot of priorities that are competing and if we have emergency funds for one drug, what do we have to do for the other drugs as well?" Benson said.

Kristina Moorhead, with the Pharmaceutical Research and Manufacturers of America (PhRMA), urged House members to focus on getting rebates and discounts to patients. Pharmacy benefit managers, insurers and hospitals are getting billions of dollars from discounts, Moorhead said, when that money should be used to keep the cost of medication low.

But Smith-Holt, who has become an advocate for affordable insulin since her son's death, asked legislators to act on Howard's insulin plan. She said every day she hears about people sharing their insulin with friends and family, rationing it or buying expired insulin on the black market.

"Affordable insulin is a right to life," she said. "And this needs to be addressed."