LINCOLN HEIGHTS, Ohio — Seven years after burying her first-born daughter, Antoinette Worsham still grieves. She didn't realize Antavia could die without a steady supply of insulin until it was too late.
The 22-year-old died in 2017, the day before her younger sister's birthday, Worsham said. The latter is now 21 and also has Type 1 Diabetes.
Antavia's insulin had been covered under her mother's secondary insurance plan, but only until she was 21. Because she didn't have to pay out of pocket, Worsham said she didn't realize how costly Antavia's insulin was.
With the drug no longer covered, Worsham said she got shocking news from her daughter.
"(Antavia) went to the pharmacy one day and she was like, 'Mom, my insulin is over $500,' and I'm like, huh? Why?" she said.
In the years since Antavia's death, Worsham said she's dedicated her life to fighting for policy change in Ohio. She's protested outside major pharmaceutical companies and even spoken before Congress.
She wants the out-of-pocket price of insulin capped at $35 per month for all Ohioans, not just seniors.
In 2022, Congress codified legislation benefiting diabetic Medicare patients. Democratic Ohio Senator Sherrod Brown helped pass it, and now wants to see that price cap extended to all those who require insulin, regardless of their health care.
Brown joined Worsham, health leaders and others who've lost loved ones to diabetes Wednesday at the Lincoln Heights Health Center in a collective call for action.
"To lose (Antavia) at such a young age ... to have another daughter who's fighting the same disease," Worsham said. "To know that our country can afford for the American people to have affordable health care and affordable insulin just drives me insane."
Brown told the room that it costs "big pharma" $10 to make one vial of the life-saving drug, yet some pharmaceutical companies charge patients well into the hundreds and even into the thousands to purchase the monthly doses.
"You have no choice but to pay for this insulin, but far too many families will ration because they can't afford the cost," he said.
Brown said when he was still a congressman in northern Ohio, he would take busloads of seniors across the border into Canada where insulin costs a fraction of the price. The drug, manufacturer and dosage were the same as what the seniors would get in the states.
"Because the Canadians negotiate drug prices directly with the companies and are able to drive costs down," Brown said. "But the drug companies have been far too powerful in Congress for many years and this time we beat them. This time we took them on. We will see for seniors, we will see the price capped at $35. The drug companies, essentially their influence stopped us from doing it for younger patients. That's the next step."
Two Ohio House lawmakers filed a bill in February echoing Brown and Worsham's goal. It is bipartisan legislation that would cap out-of-pocket insulin costs for all Ohioans at $35 a month and cap the cost of devices used in the treatment of diabetes at $100 a month.
The bill is currently in the House Committee.
Worsham said she's hopeful Congress will repeat what they did two years ago and be a champion for those who don't want to choose between insulin and other core costs.
"I've been fighting a very, very long time or the change and I'm going to continue to fight for a change and I know it's going come one day. I know we have to take baby steps," said Worsham. "I know (Antavia's) name will forever be known, forever be known. I miss her. I wish I could just bring her back some kind of way."
