Steven and Jenna Emerson are the two faces of type 1 diabetes. They need thousands of dollars in drugs and supplies to stay alive.
“I would say $15 to $30,000 a year, depending on the year,” said their mother, Kelly Emerson.
That’s what the Emerson family pays after the insurance.
“Some days you have to rob Peter to pay Paul so you can afford to keep your kids alive,” she said. “When you have a child who is sick or needs medicine, you do whatever you have to do, and they know it.”
Emerson answers calls from creditors, chooses one need over another, and manages to keep his house whole. She is one of more than 100 million Americans working to cover up 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 aren’t always aligned with those in need.
“Insurance companies are responsible for designing insurance benefits. List prices for drugs are set by pharmaceutical companies. Pharmacy benefit managers negotiate discounts, but they work for insurance companies,” Wosinska said. “Employers are the ones who select which plans to offer, often focusing on those that cost them the least.”
Wosinska said everyone has an incentive to embrace a system that sometimes works against them, with no federal solution in sight. But a partial answer may come from an unlikely source: nonprofit drug companies. They are popping up all over the country and competing with big pharma.
Allan Coukell is Senior Vice President at Civica RX. It’s one of many companies making deals with hospitals and winning federal grants. They are trying to create competition and ultimately drive down the price of generic drugs.
“Our first drug will actually launch this summer. Our insulins will hit the market in early 2024. And our goal is to make them available through a variety of mail-order channels and brick-and-mortar pharmacies,” Coukell said.
In the meantime, Emerson continues to search for elusive relief. Until then, she says, she will continue to answer calls from creditors, make tough decisions and take nothing for granted.
“You never know what the future holds. Things can change in no time,” she said. “But I want to give my children the best opportunity to live their best life.”