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"The only reason for that is greed" | Mom raises concerns as medication prices soar

Her 27-year-old son died because he couldn't afford insulin. Now, this East Tennessee mom is trying to raise awareness.

HARTFORD, Tenn. — Erin Weaver remembers Josh Wilkerson as her loving, happy child. He was the peacemaker between her three sons and loved to read books.

"He was so kind and compassionate," Weaver said. "He loved to hike."

At 8, Wilkerson was diagnosed with Type 1 Diabetes, a chronic condition in which the pancreas produces little or no insulin. 

For years, his parent's insurance helped cover the insulin he needed. He started to use his own plan as he grew older.

"For Type 1 diabetics, it [didn't] cover a whole lot," Weaver said. "Just his copay was $1,300 and his fiance had Type 1 diabetes as well."

Weaver knew her son and his fiance were struggling financially. They were paying $2,600 a month for their insulin, as well as $1,000 a month for rent. That didn't include food or other expenses, like testing strips, syringes or insulin pump maintenance.

Credit: Grace King
Erin Weaver looks at a lantern she made in her son's memory.

She and her husband would try to give Wilkerson money, but he was too proud to accept help.

"He was very independent and just wanted to be normal," Weaver said. "I tried buying him groceries and things like that, that I knew he needed around the house to help him out in a different way."

Weaver cautioned her son about the dangers of rationing his insulin. He assured her that he would be okay.

Wilkerson said his doctor had told him about a cheaper, over-the-counter insulin option. For just $25 at Walmart, he thought he could manage his blood sugar. His fiance, Rosie, switched to it too.

"It relieved me tremendously," Weaver said. "But, it's not usually just one type of insulin that a Type 1 diabetic takes."

Credit: Grace King
Josh Wilkerson loved to read. After he died, his fiance struggled to find all his library books to return.

Her son was taking long-acting insulin, which she said covers the body's necessities in addition to short-term insulin, which covered the food he ate.

The cheaper version was only taking care of his short-term needs. 

"He told his fiance that he didn't feel good and kept throwing up," Weaver said, adding that Wilkerson thought he had a stomach bug. "The next morning, she found him unresponsive on the floor."

Paramedics restarted Wilkerson's heart on the way to the hospital. He was in a coma, and had suffered multiple strokes.

"They checked his sugar immediately and he was 1,700. The normal for a type one diabetic is 100," Weaver said. "He never came out of that coma."

Weaver made the difficult decision to remove life support from her son. 

"My 27-year-old son died because he couldn't afford the insulin that he needed to take care of his Type 1 diabetes," Weaver said. "The only reason for that is greed." 

Credit: Erin Weaver
Josh Wilkerson died at age 27 after not being able to afford insulin.

She wants to see more cooperation on the national level to reduce the cost of medications. A congressional memo from April of 2019 shows prices of the most commonly prescribed insulins have increased from about $20 per vial to more than $250 per vial. Adjusted for inflation, that's a 700% increase. 

In the first three days of 2020, drug makers raised prices on more than 330 medications. The healthcare research firm "3 Axis Advisors" said the average increase was about 5%. 

More increases are expected throughout the year.

"I hate the political games that are going on right now, that are taking focus off of the people and their problems," Weaver said. "Work together and come up with something that helps us rather than killing us."

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