In May 2018, Mindi Patterson signed the Right Care Alliance Mother’s Day Card, sending a message to insulin manufacturers that they need to lower insulin prices, for the sake of parents and children everywhere who depend on this medicine to live. She read the stories of Alec Smith and Antavia Worsham, thinking of her husband, sister-in-law, and two sons, all of whom have type 1 diabetes.
Six months later, Mindi’s sister-in-law Meaghan Carter died from the same thing that killed Alec and Antavia — diabetic ketoacidosis from insulin rationing.
“I don’t want anybody else to go through this but they will,” says Mindi. “This year we lost someone. How many more?”
“She could make anyone laugh”
Meaghan was an honest, headstrong, caring, and hardworking person. Mindi and Meaghan were bridesmaids at each other’s weddings; Meaghan had the whole room laughing with her toast at Mindi’s wedding. She could make anyone laugh. Meaghan loved animals and took care of Mindi’s family’s dog whenever they asked.
Meaghan also had a stubborn streak. As a child, Meaghan’s parents were called into a meeting with her teacher because Meaghan refused to draw her pictures from the “normal” perspective. She always thought outside the box. Her resourcefulness and ingenuity helped Meaghan to thrive in life, even with managing a chronic illness for 18 years. It was only in the last five years of her life that she experienced any complications with diabetes.
Meaghan was someone you always wanted on your side, who would do whatever she needed to help others. As a nurse, she would often work late shifts, even though this made it difficult for her to manage her diabetes. Mindi recalls going through Meaghan’s apartment after she died and finding no insulin in her fridge and no testing strips, but many nursing supplies she used to take care of others.
“It took a lot for her to ask for help”
Meaghan had managed her type 1 diabetes for 18 years with few complications. Even in the last five years of her life when she started to have trouble, if she had to go to the hospital for a blood sugar problem she still would be in good spirits.
However, in June 2018 Meaghan lost one of her jobs and her insurance along with it, adding a significant financial hurdle to managing her diabetes. She had three other jobs, but none of them offered insurance. Her total income for the year was $14,000, about half of what she made the year before. Her insulin alone cost more than $800 a month, more than 60% of her annual income.
Meaghan received help from family and friends, giving her enough insulin to last three months. “Meaghan was fiercely independent. It took a lot for her to ask for help,” says Mindi. Mindi was checking in with Meaghan every morning to make sure she was okay. By late December, Meaghan had secured another job that would provide her with insurance starting in the new year. She was about to get a direct deposit of $2,000 on the 26th, which would have been enough to buy the insulin she needed to get her to the next job.
“She kept telling us she was fine, that she was okay,” says Mindi. However, Meaghan was having more trouble managing her diabetes than she had let on. Before she died, Meaghan was testing her glucose only 1 or 2 times a day, not close to enough to manage her blood sugar. On December 20th, she resorted to buying NPH insulin (intermediate-acting insulin) from Walmart, which is cheaper but much more unpredictable than the insulin she normally used.
On Christmas Eve, Meaghan was throwing up and was sick throughout the night. In the morning, her roommate tried to get her to go to the hospital, but Meaghan refused. When her roommate came home from work that evening, she found Meaghan resting on the couch in the same spot before she left. The next morning, she realized Meaghan had died from diabetic ketoacidosis.
“He could have died in my arms”
Meaghan’s death hits very close to home for the Carter/Patterson family, not just because they lost a beloved family member, but because they have other family members with type 1 diabetes as well. Mindi’s husband and two sons, Pierce and Martin, all have type 1 diabetes, so their daily lives revolve around glucose levels, insulin, insurance, and all of the other concerns one has to deal with when managing type 1.
Exactly five years before Meaghan’s death, Martin, their youngest son, was misdiagnosed when he had symptoms of type 1 and nearly died of diabetic ketoacidosis before they found out what was wrong. Martin had been throwing up for days, but doctors said it was likely a stomach virus. It was Mindi noticing Martin’s cold hands and labored breathing that pushed her to take him back to the ER, where he was diagnosed and then spent a week in the hospital.
“It was so traumatic,” says Mindi. “We were within hours of losing him. He could have died in my arms.”
As if almost losing their son wasn’t difficult enough, Mindi’s family then had to quickly learn how to manage type 1 diabetes, and figure out how to pay for it. “We always think, are we going to have enough test strips, are we going to have enough insulin?” says Mindi.
Mindi is very grateful that they have good insurance coverage from her job, so they only pay $200-300 per person per month for insulin and supplies. “I can’t imagine how much more stressful it would be managing diabetes without good insurance,” says Mindi. “If something were to happen to me, where would my family be?”
“We don’t want talk, we want change”
When Meaghan was first diagnosed she could purchase a vial of insulin for $30 over the counter. One vial now is close to $300, which lasts a week and half.
Some have responded to the recent rationing deaths by saying that Walmart insulin is the answer. But Meaghan’s story shows that in desperate situations, this type of insulin may not be effective, even for a medical professional who is very familiar with type 1 diabetes. “We’re not educated on that type of insulin anymore. No one knows how to use Walmart insulin,” says Mindi. “What we need is for the insulin we are prescribed to be sold at Walmart’s price.”
Like other relatives of those who have died from insulin rationing, Mindi is tired of the excuses from drug manufacturers. “We don’t want talk, we need change. Having to pay $300 or $500 or $1000 for a medication that is life-saving is criminal” she says. “They’re lining their pockets with my families lives.”