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Parents Deliver Ashes of Diabetic Children to Price-Gouging Insulin Manufacturer

When people die from lack of access to medicine, health care profiteers should expect resistance.

Nicole-Holt Smith, James Holt Jr. and Antroinette Worsham hold a press conference during a protest against high insulin prices outside a research facility for the pharmaceutical manufacturing giant Sanofi in Cambridge, Massachusetts, on November 16, 2018. The three parents are grieving children who recently died while attempting to ration insulin needed to treat Type 1 diabetes.

Nicole Holt-Smith arrived at pharmaceutical giant Sanofi’s research facility in Cambridge, Massachusetts, on Friday carrying a powerful testament to the consequences of price gouging essential medicines under a for-profit health system: the ashes of her son, Alec.

Alec Raeshawn Smith lived with Type 1 diabetes and lost health coverage under his parent’s insurance plan when he turned 26. He died last year after attempting to ration his insulin supply by cutting doses to make it last longer. Along with Eli Lilly and Novo Nordisk, Sanofi is one the three major insulin manufacturers accused of gouging diabetes patients worldwide who use the blood-sugar regulating hormone as a prescription drug in order to stay alive.

“Sanofi’s high prices are killing people like my son Alec,” Smith-Holt said in a statement before the action. “I’m sick of them listening to my story and then doing nothing. I’m not asking them to lower prices anymore, I’m demanding it.”

Along with parents of two other young people who died rationing insulin, Holt-Smith attempted to deliver Alec’s ashes to Sanofi officials during a protest at the research facility on Friday. The parents were flanked by dozens of local diabetes patients, doctors, nurses and students affiliated with the Right Care Alliance, a grassroots group fighting for a health care system that puts people over profits. The Democratic Socialists of American and Physicians for a National Health Program also organized the action.

Police blocked protesters from approaching the Sanofi office, 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. All of Sanofi’s employees had been sent home for the day, according to Right Care Alliance spokesperson Aaron Toleos.

“We shut them down, we think they are ashamed,” Toleos told Truthout after the action, adding that there was a heavy police presence. “They don’t want to own up to what they have done, and we are vowing to continue the fight.”

Insulin products costs very little to manufacture, but prices have skyrocketed in recent years. A vial of insulin that once cost around $25 now goes for about $400 to $500. The activists are demanding that Sanofi immediately lower the price of its insulin products by 90 percent.

Dr. Vikas Saini, co-director of the Right Care Alliance and an organizer of the protest, pointed to recent research showing that the cost of manufacturing insulin is so low that companies like Sanofi could drastically reduce their prices and still enjoy a 500 percent retail markup. Saini said insulin has been around for a century and costs about $5 to manufacture, so nobody should die from lack of access.

“This issue has been around for years, for many years … we really think it’s time for talk to stop and for real action, and we don’t think it’s going to happen any other way, so that is why people are willing to risk arrest,” Saini said.

The protesters are also demanding that Massachusetts Gov. Charlie Baker, the state legislature and all health insurance plans act now to ensure that insulin and other essential medicines are made free to all patients who need them.

Under a for-profit health system, even people who have health coverage can find medicine unaffordable. In February, Holt-Smith wrote an op-ed for Truthout detailing how sky-high insulin prices contributed to her son’s death. Alec made a modest income as a restaurant manager, but like many working people, his employer did not offer robust health coverage. As Holt-Smith explained:

For Alec, this meant that his insulin and supplies cost almost $1,300 a month. He and I together researched for months in advance about his health insurance options. They weren’t good. The best plan we found would cost him $450 a month for the premium with a whopping $7,600 deductible. That deductible meant he would be paying out-of-pocket for his medicine for many months anyway, so he decided to go without the plan until he could find a different job with benefits.

With the cost so high, Alec tried to ration his insulin. I have since learned that this is not uncommon. Globally, half of the people who need insulin can’t reliably get access to it. With 6 million people in the US insulin-dependent, and nearly 40 percent of Americans uninsured or facing high deductibles that leave their medicine costs uncovered, the crisis is occurring right here, too.

The three major insulin manufacturers have come under increasing pressure to lower prices as this crisis continues to make headlines. People with Type 1 diabetes need to use insulin to survive on a regular basis, making them vulnerable to price gouging.

Manufacturers have responded by touting internal programs designed to make insulin more affordable for individual patients, but Vikas said Right Care Alliance members living with Type 1 diabetes say these programs are have complicated eligibility requirements and amount to little more than “PR window dressing.”

Manufacturers also blame inflated prices on insurance companies and the pharmacy benefit managers, whom insurers hire to secretly negotiate rebates and discounts on pharmaceuticals in exchange for making drugs available on heath plans.

Advocates are also critical of the rebating system. Charles Fournier, a co-director of the Type 1 Diabetes Defense Foundation, said rebate payments can reduce the cost of Sanofi’s insulin product Lantus to insurance plans by 80 percent, but those savings are not passed on to plan members.

“Insurers launder those rebates through their national holding companies as ‘general revenue,’ while inflating state plan costs, overcharging people with diabetes based on list prices, and thus forcing insulin rationing — proximately causing medical complications, physical harm and death,” Fournier said in an email.

A class-action lawsuit filed in a federal court in New Jersey accuses Eli Lilly, Novo Nordisk and Sanofi of acting like an insulin “cartel” and raising prices “in lockstep,” and the court recently granted the Type 1 Diabetes Defense Foundation permission pursue a parallel lawsuit against insurance companies and pharmacy benefit managers for their role in the affordability crisis, along with manufacturers. Minnesota’s attorney general recently filed a separate lawsuit against the three manufacturers for deceptively raising insulin prices, but not against insurance companies.

“What if everybody had good insurance?” Saini said. “It’s still not OK for manufacturers to have 5,000 percent markups on insulin.”

Insulin has become the poster child for the debate over high pharmaceutical prices in the United States. President Trump has attempted to paint himself as a champion of the issue, but his administration has struggled to come up with policies that can put a meaningful dent in drug prices. In the meantime, the pharmaceutical industry has donated millions of dollars to the pro-Trump dark money campaign groups.

“The Trump administration, and its small maneuvers on drug pricing, ultimately aim to protect Big Pharma from public outrage and calls for greater changes to its abusive, monopolistic business model,” said Peter Maybarduk, director of Public Citizen’s Global Access to Medicines Program, in a statement on Friday.

The debate over insulin affordability points to the dangers of a for-profit health system. Standing between people living with Type 1 diabetes and the insulin that keeps them alive are a number of wealthy corporations that value profit margins over human health. When people die from lack of access to medicine, health care profiteers should expect resistance.

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