Steven and Jenna Emerson are two faces of Type 1 diabetes. They require thousands of dollars in drugs and supplies to stay alive.
“I would say 15-$30,000 a year, depending on the year,” said their mother, Kelly Emerson.
That’s what the Emerson family pays after insurance.
“Some days you have to rob Peter to pay Paul to be able to afford to keep your children alive,” she said. “When you have a child who's sick or needs medicine, you’ll do whatever you have to do, and they know it.”
Emerson fields calls from creditors, chooses one need over another, and manages to keep her house whole. She’s one of more than 100 million Americans stretching to cover what will save someone’s life.
Marta Wosinska has spent more than two decades studying drug pricing and policy. She says prices are dictated by a web of interests that are not always aligned with those in need.
“Insurance companies are the ones responsible for how insurance benefits are designed. Drug list prices are set by pharmaceutical companies. Pharmacy benefit managers negotiate rebates, but they work for the insurance companies,” Wosinska said. “Employers are the ones who select which plans to offer, often focusing on those that have the lower cost to them."
Wosinska said everyone is incentivized into a system that sometimes works against them— with no federal solution in sight. But a partial answer might come from an unlikely source: nonprofit drug companies. They are popping up around the country and providing competition to big pharma.
Allan Coukell is a senior vice president with Civica RX. It is one of several companies making deals with hospitals and obtaining federal grants. They’re trying to create competition and ultimately lower the price of generic drugs.
“Our first drug will actually launch this summer. Our insulins will come to market in the beginning of 2024. And our goal is to have them available through a variety of channels of both mail order and bricks and mortar pharmacies,” Coukell said.
In the meantime, Emerson continues to seek elusive relief. Until then, she says, she will continue to field calls from creditors, make tough decisions, and take absolutely nothing for granted.
“We never know what the future holds. Things can change on a dime," she said. "But, I want to give my children the best opportunity to live their best life."