The heart of Erin Wilson-Weaver will forever be riven.
Her son Josh Wilkerson, who was supposed to be married this fall, is instead dead because he couldn’t afford the type of insulin needed to save his life.
“He didn’t want to die. He did take care of himself. It all comes down to money,” his sobbing mother said on Thursday. “The same insulin he was using has gone up 300 percent.”
The 27-year-old dog kennel worker died in June, after his worried fiancee, Rose Walters, drove down to the canine shelter because Wilkerson wasn’t answering his phone. They both worked at the facility, and both had type 1 diabetes.
Wilkerson hadn’t felt well the night before he died, and he was pulling an overnight shift at the kennel, so he was sleeping in an office there. His fiancee found him on the floor in a diabetic coma. Five days later, his family stopped the machines keeping him breathing and let him go.
His “brain scan didn’t look anything like a normal brain should look,” his weeping mother said. His heart was strong, but his mind was irreversibly gone. “He had multiple strokes that fried his brain” after he fell into a coma, his mom said.
But Wilkerson had been struggling for months with the disease he had been diagnosed with at age 8. Health insurance covered his insulin and medical equipment costs until he was 26, when he aged out of Obamacare’s provision that allowed young adults to remain on a parent’s insurance police.
After that, Wilkerson started rationing his insulin intake, a drug he needs like the rest of us need oxygen. “He tried that for awhile,” his mother said. He and Walters moved into a house with a rent of $1,000. His monthly insulin costs were $1,200. Walters paid the same amount for her drug.
His mom came across an article about a young man who had died while trying to stagger his insulin usage because the drug was so expensive. She said she sent it to her son with a note reading, “Please don’t do this. This is my worst nightmare.”
Like any young man, Wilkerson wanted to stand on his own two feet. He was fine, he told his mom. Let me worry about it.
He went to his doctor and said, “What can I do? I can’t do this anymore.” The physician, Wilkerson’s mother said, suggested ReliOn, an older insulin product sold by Walmart for $25 a vial. Known as human insulin, the prescription drug requires up to four hours to take effect and can peak and wane, whereas newer “analogue” insulin kicks in much faster and is far more consistent in regulating blood sugar levels.
The older insulin worked fine for Walters, but Wilkerson’s body didn’t tolerate it as well, his mother said. He hid much of this from his mom, saying “he was OK,” his mother recalls. But he clearly wasn’t.
Escalating insulin costs have prompted demonstrations outside pharmaceutical companies in recent months and a congressional hearing on skyrocketing prices in Washington, D.C.
Reports also have grown of people dying because they could not afford ever-increasing insulin bills. In response, some drug manufacturers have pledged to offer less expensive versions, but critics say the process is taking too long and doesn’t significantly cut costs.
“The pharma companies are raking in profits. They basically have a monopoly on the market,” Allison Bailey, U.S. advocacy manager for T1International, said. Prices have risen “1,300 percent since 1986,” she said. “There are a lot of patients who are fighting for their lives.”
Wilson-Weaver said her son was one of them. In the days before his death, Wilkerson told his fiancee that he “just really felt sick,” his mom said. “He kept throwing up. His sugar was really high.” His fiancee told him to take more insulin, and he did. “But it did not take effect quickly enough,” his mother said.
The next morning, when Wilkerson didn’t answer his phone, Walters headed for the kennel.
The spiraling costs of insulin cost Wilkerson his future, according to his mother.
She had seen it before. Her father also had type 1 diabetes. He died at 38. She was just a young girl. She is riddled with guilt that she passed that disease to her son. “I wish I could have saved my son’s life,” she said. She had been unaware that insulin was available in Mexico and Canada at a fraction of the U.S. cost.
“My job now, for my son, is to make a change for the future. These poor kids now, who are facing the same situation, they can’t afford to live. There are young people living out of their cars … and they’re just barely making it because they have to pay for their own insulin.
“It just breaks my heart,” she said. “This shouldn’t be happening in our wonderful country. It just shouldn’t be.”