When Josh Wilkerson was a boy, he would page through his family’s church directory to find people celebrating birthdays that day so he could call and wish them, “Happy Birthday!” He played Little League baseball and loved pro wrestling, often pantomiming the faux violence he saw on TV with his three brothers. One time, he peed on his brother’s bed after they’d fought and blamed it on spilled apple juice.

He was, in other words, a vibrant, lighthearted kid. “He was normally easygoing and liked to laugh,” his mother, Erin Weaver, told Truthout. “I was always able to tell when his blood sugar would go above average because he would become angry and combative. That wasn’t his normal behavior. I’d tell him that I’d like him to test his sugar. He would, and sure enough, his sugar would be high.”

Diabetes, according to the Centers for Disease Control and Prevention (CDC), affects more than 100 million people in the U.S. The disease is broken down into three main categories: Type 1, Type 2 and gestational. In January of 2000, Josh was diagnosed with Type-1 diabetes, the rarer form of the disease, which affects 5 percent of people with diabetes. He was 8 years old and lived with the illness for the next 19 years.

On June 10 of this year, Josh began vomiting repeatedly. When he failed to answer repeated phone calls, his fiancée Rose went looking for him. She found him unresponsive in the shower and called paramedics immediately. Josh was suffering from severe diabetic ketoacidosis, a serious complication that arises when there is not sufficient insulin in the body.

His blood sugar, when tested, stood at a lethal 1,700, and his brain was swelling. He was placed in the intensive care unit, where a brain scan revealed he had suffered a series of profoundly damaging strokes. On Friday, June 14, after realizing there was no hope, his family made the excruciating decision to remove him from life support, and he died the next day. He was 27 years old.

Josh Wilkerson had been rationing his insulin because he couldn’t afford the $1,200 per month cost of proper care, and it killed him.

The Price of Pain and the Pain of Price

The rationing of needed health care due to high cost is not rare in the U.S., and is growing rapidly within the diabetic community. “Among adults with diagnosed diabetes who were prescribed medication in the past 12 months,” reported the CDC this month, “13.2 percent did not take their medication as prescribed, and 24.4 percent asked their doctor for a lower-cost medication. The burden associated with high prescription drug costs remains a public health concern for adults with diagnosed diabetes.”

Josh Wilkerson had been rationing his insulin because he couldn’t afford the $1,200 per month cost of proper care, and it killed him.

Until he turned 18, Josh was “spoiled” — his mother’s word, and a remarkable one when used in the context of vital health care — by his endocrinologist, receiving excellent care in the 10 years after his initial diagnosis. “When he turned 18,” his mother said, “he aged out of Pediatric Endocrinology and was put on a long waiting list for a regular endocrinologist. He turned 18 before Obamacare went into effect, and struggled in getting his own insurance.”

It was during this time that Josh first began rationing insulin due to cost. After the passage of the Affordable Care Act (ACA), Josh’s stepfather was able to place him on his insurance, the cost for his health care needs plummeted, and his life improved dramatically.

Josh and Rose, who he met online in a group for people with Type 1 diabetes, were able to save money for an apartment, went to baseball games and enjoyed hiking trips. One evening, by the light of a Virginia Beach sunset, Josh proposed to Rose with a ring he had hidden in a conch shell, and she accepted. He was not rationing his insulin anymore, and his future was as wide open as the horizon beyond that beach.

The better times ended when Josh aged out of his parental insurance coverage under the ACA, and money again became a crisis. Josh “hated asking for money,” said his mother. “He told me that he was rationing his insulin only after he made the switch from his prescribed insulin to Walmart ReliOn insulin, which was only $25 a vial. He assured me that he was doing fine, and that he was going to earn some extra money by doing some apartment sitting for his manager.” This switch, too, was rationing: A move to a less effective, over-the-counter product due entirely to cost.

“Finances really stressed Josh out,” his mother said, “and when Josh got stressed, his sugar level would go up. Josh had real bills. He was still struggling to pay back his student loan. His rent was $1,000 a month. His hourly rate of pay was around $16.”

In other words, Josh lived the same paycheck-to-paycheck existence endured by millions of people in this “booming” economy. The additional $1,200-per-month burden of medical expenses became too much to bear, and the shame of being unable to financially support himself drove Josh back to the insulin rationing that ultimately ended his life. Inflicted humiliation over money is another common malady these days and does not spare those who are sick.

The Profit Motive

Insulin and its high cost have been much in the news of late, as the price of doses has exploded in recent years to the detriment of millions. Some who are able have been crossing the border into Mexico to buy the life-saving medication. Many of those who are not able to make that trip have fallen into deep financial distress, have rationed their supply or have gone without entirely. Sometimes, like Josh, they die.

“The price of insulin — once modest — has skyrocketed in recent years,” reported The Washington Post in January, “making the lifesaving medication a significant, even burdensome, expense, especially for the uninsured and underinsured. The costs are so heavy that they have driven some patients to ration their supplies of the drug in a dangerous gamble with life-threatening consequences.”

Insulin was discovered in 1921 by Canadian researchers and patented for the sale price of $3. But the production and sale of the drug have become a profoundly profitable enterprise for Eli Lilly, Novo Nordisk and Sanofi-Aventis, three of the largest insulin manufacturers in the world.

The price of insulin has tripled in the last 10 years alone; a 10-millimeter vial of Eli Lilly’s Humalog brand of insulin cost $21 in 1996, but costs $275 today. Put in starker financial terms, according to Truthout reporter Mike Ludwig, the price of Eli Lilly’s Humalog went “from $2,657 per year to $9,172 from 2009 to 2017: a 345 percent increase.”

“Finances really stressed Josh out,” his mother said, “and when Josh got stressed, his sugar level would go up.”

The other two insulin-producing pharmaceutical giants charge similarly steep prices for their products. People with diabetes often need multiple vials of insulin per month to survive, and costs can mount exponentially at astonishing speed. Blame for these crushing increases in price can be spread between the pharmaceutical and health insurance industries, as well as to middlemen known as pharmacy benefit managers — each of which, predictably, blame the others for increasingly high costs.

“Drug costs in the U.S. are higher than in many European countries,” reports Ludwig, “and manufacturers are under increasing public scrutiny for raising the price of specialty medicines like insulin year after year. However, the backroom negotiations that determine the prices insurance plans actually pay for prescription drugs are as confidential as the prices themselves, allowing both sides to accuse the other of gouging customers.”

For the moment, there is little recourse to be found for those struggling to manage the cost of living compounded by the ongoing price-gouging practices of these pharmaceutical corporations. A class-action lawsuit against Eli Lilly, Novo Nordisk and Sanofi-Aventis over the price of insulin is slowly wending its way through the legal system. President Trump campaigned in 2016 on the need to lower prescription drug prices, but the still-unratified trade deal he negotiated with Canada and Mexico promises to do the opposite.

“The new NAFTA also grants marketing exclusivity for new uses and forms of medicines that already exist on the market,” reports Ludwig. “This means pharmaceutical companies can enjoy monopolies on drugs that have existed for years by developing new ways to use or administer them. For example, patents on insulin products have sent health care prices for diabetics through the roof, even though insulin has been around for decades.”

A Reckoning of Sorts

Not long after last year’s midterm elections, Nicole Holt-Smith carried the ashes of her son, Alec, to the research headquarters of Sanofi Pharmaceuticals in Cambridge, Massachusetts. Like Josh Wilkerson, Alec Smith suffered from Type 1 diabetes. Like Josh, he lost health insurance coverage under the ACA when he turned 26. Like Josh, he rationed his insulin because he could not afford the cost of Sanofi’s product. Like Josh, Alec died.

Nicole Holt-Smith was flanked that day by the parents of other young people who had also died because they rationed their insulin due to its cost. “Police blocked protesters from approaching the Sanofi office,” reports Ludwig, “but organizers negotiated with them to allow the parents to deliver the ashes of Alec and Antavia Lee-Worsham, who also died while rationing insulin last year. Security guards then turned the parents away at the front door, threatening them with arrest.”

Health care activists are not through protesting the pharmaceutical industry over the too-high cost of insulin. T1 International is a nonprofit organization run by people with and impacted by Type 1 diabetes, which aims to advocate for and support others with the disease. Their vision statement reads, “We believe in a world where everyone with Type 1 diabetes — no matter where they live — has everything they need to survive and achieve their dreams.”

Josh’s death “has to be made to mean something.”

On September 14, T1 International and its allies will hold a vigil outside the headquarters of Eli Lilly in Indianapolis, Indiana, “to honor those who have died due to the high cost of insulin and to call for pharmaceutical companies to lower the cost of life-sustaining insulin,” according to a press release by the organization.

Among the attendees and speakers at the vigil will be family members of those who died from rationing insulin, including Nicole Smith-Holt​, mother of Alec Smith. Erin Weaver, mother of Josh Wilkerson, will be there as well.

When asked by Truthout what she would say to Eli Lilly’s board members should she be afforded the chance, Erin replied:

“When the Lilly company was founded in 1876, Col. Eli Lilly was committed to integrity in medicine and care toward the people who need it. According to your own website, you claim to follow ‘3 Core Values: 1. Integrity, 2. Excellence, 3. Respect for people.’ I challenge you to re-examine those core values in light of your recent price gouging of Type 1 diabetics. Eli Lilly is overcharging people for the sole purpose of making themselves more money. The consumers are the means for Eli Lilly to make large profits, and there is no way out. Insulin is a necessary medicine that Eli Lilly is manipulating to benefit themselves while causing IMMENSE harm and even death to the very people you claim to respect. My son died at 27 because his income was insufficient for him to purchase all the appropriate, life-saving insulin and supplies he needed and still pay his everyday bills. YOU as a company are directly responsible for his death. Let that sink in. In your goal toward a higher profit margin, you have allowed yourselves to become MURDERERS!! Does that fit into ANY of your three core values? Your website claims to offer hope. Please re-examine how your core values stated are not being met. You can bring that hope. You can bring integrity back to your company. We live in the United States of America. We can always decide to do better. Your company can decide to do better. My son, Joshua Andrew Wilkerson 1991-2019, wants you to live up to the core values you claim.”

Erin Weaver and the family of Josh Wilkerson remain in deepest mourning. For Erin, life has a new and furious focus: Her son’s death must be made to count for something beyond another insulin-related square on the obituary pages. She will be in Indianapolis next month to call the wealthy pharmaceutical arbiters of life and death to account for the untimely and utterly unnecessary loss of her beloved son.

“It has to be made to mean something,” she tearfully told Truthout. “It just has to.”

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