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Shortly after Deidre Waxman of Newton, Mass., became an insulin-dependent Type 1 diabetic at age 60, she mailed $2,000 worth of insulin to a friend in California. As do many people who are insulin-dependent, Deidre had been stockpiling insulin in case she lost her insurance or ran short.
Her 37-year-old friend had lost her insurance in a messy divorce, was supporting a child, and living in a trailer park. She was not eligible for Medicaid, was blind due to complications of diabetes, and had no income. While she was battling social services, she was desperate for any kind of insulin she could get, including expired medication.
Knowing how much was on the line for her friend, it was an easy decision for Deidre to make to share her insulin. But stories like her friend's are becoming more and more common in America, as prescription drug prices increase at up to five times the rate of wages.
At least three young Americans died last year from rationing insulin. Shane Patrick Boyle died while struggling to raise the last $50 he needed for his insulin through his GoFundMe campaign. Antavia Lee-Worsham of Cincinnati was struggling to afford her insulin and died at the young age of 22. And in Minnesota, Alec Raeshawn Smith died from rationing insulin just a month after losing his insurance. The price of insulin had increased over 1,000 percent over their lifetimes.
This Mother's Day weekend, Waxman and many others are organizing an "Insulin Day of Action": events in seven major cities around the country, from New York to Cincinnati to San Francisco.
They aim to honor all the mothers of children with diabetes and call on the three manufacturers of insulin -- Eli Lilly, Sanofi and Novo Nordisk -- to reduce their list prices on insulin. My estimate is that an immediate reduction by 80 percent would not actually change their net revenue, and the government could negotiate lower prices from there.
As a physician, I see this as a humanitarian crisis that demands a break from business as usual. It calls for a coalition of voices, from the medical community to people with diabetes and their friends and families, from those angry about the state of health care to scientists who can see how the industry has veered away from a “patients first” perspective.
For those who may not know, people with Type 1 diabetes cannot produce insulin on their own. They require regular injections — usually several per day — in order to stay alive. Without the injections, their blood sugar skyrockets and their bodily functions start shutting down. They may last a week before dying. Insulin is that essential.
Besides the black market, those who are insulin-dependent also turn to GoFundMe campaigns or the dangerous practice of rationing in order to get by.
At first glance, insulin may seem to be an unlikely medicine to be a part of the general mayhem of drug price gouging. It was discovered and purified nearly 100 years ago. Up to that point, the diagnosis of diabetes was a virtual death sentence, and the discovery of insulin was a miracle that saved countless lives.
Frederick Banting and Charles Best -- the unlikely pair of Canadians who made the discovery, one an orthopedic surgeon and the other a medical student -- were determined to see insulin widely distributed to help the maximum number of people. They signed over their patent rights to the University of Toronto for $1, which in turn gave them to the Eli Lilly company.
Imagine if you had to pay for the air you breathe or the water you drink, and it went from $100 a month to a $1,000 a month in just two decades.
Today in the United States there are about 3 million people with Type 1 diabetes and about 4 million with Type 2 diabetes who depend on insulin to stay healthy. The cost to patients for their insulin and supplies can be as high as $1,400 a month.
For many, this price is too much. Hoarding, sharing supplies on the internet, over-exercising or fasting — these are all tactics that people with Type 1 diabetes are using to save on insulin. In a recent survey, 1 in 4 people with Type 1 said they have rationed their insulin when their supply ran low -- an extremely dangerous tactic.
Imagine if you had to pay for the air you breathe or the water you drink, and it went from $100 a month to a $1,000 a month in just two decades. Although it’s almost impossible, try to imagine what it is like to lose your child because they can’t afford insulin, a medicine that’s been around for 100 years.
Global insulin manufacturers saw revenues of $34 billion in 2017-2018, projected to rise to $44 billion in 2021. Before he was recently named by Donald Trump as secretary of health, Alex Azar made $2 million last year as CEO of Eli Lilly, and then got a $1.6 million severance package. The current CEO, David Ricks, stands to make close to $12 million by the end of his first year at Lilly, according the Indiana Business Journal.
On Friday, President Trump published a laundry list of areas where action could be taken to push drug prices lower, but it appeared to fall short and include too much finger-pointing at forces outside the United States, when the problem is here.
Deidre’s friend was grateful for the help she got and eventually was able to get Medicaid coverage, enroll in a junior college, and slowly get her life back together.
Tragically, Antavia, Shane and Alec did not get that second chance. On Saturday, we are telling pharma that they need to lower insulin prices now, for the sake of parents and children everywhere who depend on this medicine to live.
Dr. Vikas Saini is a cardiologist, the president of the Lown Institute and co-chair of the Right Care Alliance, a clinician- and patient-led health care reform movement.
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