On Mother’s Day, Nicole Smith-Holt, whose son died last year after rationing his insulin, protested insulin prices at a rally at the Minnesota state capitol. That same month, she traveled to Indianapolis to meet with a representative of the insulin maker Eli Lilly.
This week, she and another mother whose child died under similar circumstances plan to travel to the office of insulin maker Sanofi in Cambridge, Mass. They will also be holding their children’s ashes.
“It’s a visual reminder for them of what’s at stake,” Smith-Holt said, who will join activists in a “die-in” at the Sanofi office on Friday.
Anger over insulin prices in the U.S. has swelled as the nation’s largest insulin makers have hiked the price of the drug. Those price increases are now the subject of a class-action lawsuit and have drawn the attention of lawmakers in Washington.
But the price hikes are also fueling public outcry by patients, caregivers, and clinicians. Last month, patients and activists marched outside Lilly’s headquarters demanding “insulin for all.”
When Smith-Holt’s son had health insurance, he paid between $200 and $300 a month for the insulin and supplies he needed for his type 1 diabetes. He died on June 27, 2017 — less than a month after his 26th birthday, when he could no longer stay on his mother’s health insurance plan. Without insurance, the restaurant manager was facing about $1,300 a month in out-of-pocket costs, according to Smith-Holt.
“Unfortunately, he didn’t reach out to anyone for help. He was trying to make what he had last,” Smith-Holt said. After he called out sick from work, Smith’s girlfriend went to check on him in his apartment. She heard his phone ringing, but he never picked up. She found him on the bedroom floor.
“This is a crisis,” said Smith-Holt. She will lead the protest with Antroinette Worsham, an Ohio mother whose 22-year-old daughter, Antavia, died in April 2017. Worsham went on to found a nonprofit that aims to raise awareness and provide financial help to patients with diabetes who can’t afford treatment.
A 2016 study published in the Journal of the American Medical Association found that the price of a milliliter of insulin climbed 197 percent between 2002 and 2013. And an analysis published in September found that insulin prices could be much lower and drug companies would still turn a healthy profit.
In a statement, Sanofi acknowledged that many people with diabetes have significant difficulty accessing the medicines they need.
“We take this issue seriously, and continue to explore innovative ways to find long-term solutions to help eliminate or significantly reduce the out-of-pocket expenses for patients,” said Ashleigh Koss, a spokesperson for Sanofi.
Koss also noted that the company has a savings program and a copay program, and provides free medications for some low-income, uninsured patients through its assistance program.
Smith-Holt isn’t satisfied with the answers she’s received from drug makers so far. She wants to see more price transparency.
“We want to know how much it costs to manufacture insulin, what their profits are on a vial of insulin, how much they spend on advertising and marketing,” she said.
Smith-Holt and other advocates joining the protest hope to raise awareness on the issue of insulin access. But they’re also hoping to get the attention of leaders at Sanofi and have an opportunity to share their stories with the company.
“We really want to drive home the point that this lifesaving medication is far too expensive,” she said. “Something has to be done.”