By Hazel Trice Edney
(TriceEdneyWire.com) – Antanique Lee-Worsham of Cincinnati, Ohio has a landmark birthday coming up on June 9, 2021. That’s the day she will turn 21 years old. But her landmark birthday is unlike many 21-year-olds who often celebrate it as the legal age to buy alcohol among other symbols of adulthood.
Instead, for Lee-Worsham, turning 21 will be the day she becomes financially responsible for the insulin that keeps her alive. It is the day that her coverage from a program for children with medical handicaps will end—which has paid for her insulin since she was diagnosed at 12 years old as a Type 1 diabetic. This is also the day that she will begin seeking ways to pay for the nearly $500 a month – approximately $6,000 a year – cost for Insulin – because she’s got to have it in order to stay alive.
“It doesn’t really make sense to me,” said the University of Toledo (Ohio) student, who is enrolled in the paralegal studies department. She’s already sounding like the civil rights lawyer or juvenile defense attorney she’s planning to become. “I think we shouldn’t have to pay so much when it’s the only thing that’s keeping us alive. There really should be laws to stop companies from putting these high prices on prescription drugs.”
Antanique knows well the highest price that many have paid when unable to meet the demands of profit-driven pharmaceutical companies. Only three years ago on April 26, 2017, her 22-year-old sister, Antavia, also a Type 1 diabetic, laid down after a shower and never woke up again.
“Her insulin pin was in her bed, but it was empty,” recalled their mother, Antroinette Worsham, her voice quivering with grief during a telephone interview. “Oh my God I miss my baby so much. I do these interviews because they bring out awareness. But, oh my God. I miss my baby.”
Twelve weeks after Antavia’s death, autopsy results showed, “full blown DKA”, Ms. Worsham recalls. DKA means Diabetic Ketoacidosis. In a nutshell, Ketoacidosis happens when “the body starts breaking down fat at a rate that is much too fast. The liver processes the fat into a fuel called ketones, which causes the blood to become acidic,” according to the U. S. National Library of Medicine.
The American Diabetes Association reports that only 1.25 million people in the U. S. are living with Type 1 diabetes. That’s only 5 percent of all diabetics, including the Type 2 variant. In short, the difference is Type 2 diabetics use medication to help their pancreases produce insulin, but the pancreases of Type 1 diabetics make little or no insulin at all. Insulin is a hormone that helps blood sugar enter the cells in the body where it can be used for energy. Without insulin, blood sugar can’t get into cells and builds up in the bloodstream.
Antavia’s diabetic supplies had been fully covered by the state of Ohio program, Bureau for Children with Medical Handicaps (BCMH), until she went to pick up her prescription one day and learned that she had aged off of the program when she turned 21. That’s the same program that 20-year-old Antanique is in now.
“Prior to that, they paid all of her diabetes care, everything, her insulin, her pins, needles, everything. Whatever my corporate employers’ insurance didn’t cover, BCMH covered,” Ms. Worsham said. Until “One day she went to the pharmacy and she said, ‘Mom my medication is $500!’ I said $500. Why?!” Somehow, in the midst of her busy life as a single mother of four children working two jobs, she’d missed the explanation that the BCMH coverage would end when Antavia turned 21.
Although Antavia also worked two jobs—mainly as a security officer for Delta Airlines corporate offices in Downtown Cincinnati—she was still not able to cover the cost of her insulin. Not knowing of other resources, “she would just ration,” Ms. Worsham said. “We knew that she didn’t have enough insulin because she would use her sister’s and her grandpa’s until she couldn’t use it anymore. They couldn’t afford for her to use theirs, so, she basically would just skimp.”
Having missed Antavia’s symptoms of DKA – the fruity breath smell, the shortness of breath, and the excessive thirst – among others, Ms. Worsham is now determined to assure that she “can save Antanique if it ever comes to that point. And here soon, we’re not going to be able to afford it.”
Her determination is clear. Antavia’s death stirred a fire within her mother, a fire that refuses to let her Antanique die and won’t allow her Antavia to have died in vain.
As a part of that battle Ms. Worsham has founded a non-profit organization, T1Diabetes Journey, Inc. to promote awareness. She was invited to speak at a 2019 Congressional hearing in Washington, DC. There, wearing a T-shirt that said, “Patients Over Profit,” she made her case to lawmakers about why they must make new policies to bring down the high costs of prescription drugs.
“Antavia was diagnosed at the age of 16 and only lived six years with this disease due to the high cost of insulin,” she said in her videotaped speech before the U. S. House Committee on Oversight and Reform on Jan. 29, 2019. “I’m crying out and asking Congress to review the pharmaceutical price gouging…I know there’s rules and there’s regulations and there are policies. But we want to save more lives. It can be done. And you are the people to make it happen.”
The high cost of prescription drugs as an affordable health care issue is quickly growing in prominence as lawmakers on both sides of the aisle have begun to delve into the issue. Insulin has risen as a specific example, probably because of the high use of it across the U. S. for both Type 1 and Type 2 diabetes. But it’s also because of the extreme prices. According to the Mayo Clinic, “The most commonly used forms of analog insulin cost 10 times more in the United States than in any other developed country.”
The now late Congressman Elijah Cummings, who chaired the Committee that invited Ms. Worsham to speak, agreed in a strong appeal to his colleagues as he introduced her. He said passionately, “The ongoing escalation of drug prices by drug companies is simply unsustainable. This is a matter, literally, of life and death and we have a duty to act now.”
Despite passion about the issue, no bills have passed both houses of Congress during the two years of the 116th Congress, according to Congressional Bill Status.
Meanwhile Ms.Worsham says she will not give up. “Where are we going with this?” she asks. “People still can’t afford this life-sustaining medication and they’re dying so young. My baby was 22.”
By Hazel Trice Edney