The aftermath effects of a preventable death
We begin our story in Minnesota. It is the summer of 2017. Alec Raeshawn Smith had just turned 27 the month prior and had aged off of his mother’s health insurance. Smith was a restaurant manager making roughly $35,000 a year which disqualified him for Medicaid or other financial assistance. Smith was also a type one diabetic, who died from diabetic ketoacidosis from rationing his insulin. When Alec was found he was alone in his apartment, his insulin pen had run empty, and he was shy just three days before his next payday.
Diabetic ketoacidosis, or DKA, is a condition in which the body lacks enough insulin to lower blood glucose causing the blood in the body to become too acidic, your cells begin to dehydrate, and your body begins to shut down. Insulin is a hormone created by the pancreas to lower blood glucose and keep the body homeostasis. Without insulin, the body would enter into DKA. Many people do not have to worry about this happening because their pancreas works perfectly fine. That can not be said for those of us who suffer from Type One Diabetes Mellitus. This is a condition in which the immune system attacks the beta insulin-producing cells in the pancreas, leaving the person insulin-dependent and immunocompromised.
This happened to me once before, I was 18 and had just started my first week of my freshman year of college. My insulin pump cannula had become kinked underneath my skin, causing a lack of insulin in my body. Within 18 hours, I had become so dehydrated my veins collapsed and I was hospitalized and homebound for a week. But I am lucky because I survived. I was also lucky because I had adequate health insurance to cover the procedure. I took a look at the itemized billing statement once I was released. The grand total? $10,000. For many Americans, that total is a dream to have. Had this incident happened six months later, I may not be alive to tell you this story, because a month after my hospitalization I lost my health insurance.
After the passing of her son, Nicole Smith-Holt was determined to assure no-one else had to endure the same fate as her son. Nicole is the Chair Ambassador for the nonprofit organization T1International, a global campaign aimed at bringing to light the insulin crisis, not only in the United States but across the globe. Nicole advocates that access to insulin is a human right, and no-one should not be denied access to supplies based on their income level. On Nicole’s T1International statement she was asked, “What are you most looking forward to for the future with this movement?” To which she replied, “I look forward to the day that people with diabetes are able to purchase their insulin and supplies without the worry of cost. I look forward to the day when no one with diabetes worries about compilations or death as a result of not being able to afford insulin. I look forward to a day when I no longer need to stand before a room of our elected officials and retell the story of my son’s death. I look forward to a day when insulin insecurity no longer exists anywhere.”
Nicole Smith-Holt has dedicated her life to helping people in need access their insulin and supplies, by going on caravan trips out of the country to purchase insulin from Canada and Mexico where the cost of insulin is a tenth of the market price it is sold here in the U.S. In early May of 2019 Nicole traveled to Canada and was able to purchase a vial of insulin, which retailed in the United States at $332 but paid less than $60 for the same exact vial.
Within the last 100 years, the world has seen a significant rise in medical research and technology. From the vaccine for polio to radiation treatment for cancer patients to the groundbreaking discovery of insulin in 1922. In 1921 the life-saving drug was discovered by four Canadian medical scientists, Fredrick Banting, Charles Best, and John MacLeod, and was later purified by James Collip. This discovery meant those who were diagnosed with type one diabetes could live a somewhat normal life. The previous life expectancy of someone diagnosed before 1921 was between one to two more years. On January 11th, 1922 the first administration of the drug was given to 14-year-old Leonard Thompson. The drug at the time was still adulterated, and Thompson suffered an allergic reaction to the drug. The next 12 days Collip worked to purify the drug and on January 23rd, 1922, the first successful injection of insulin was given without side effects. This medical discovery went on to be one of the greatest of the early 20th century. By 1923, Banting, Best, and Collip were awarded the American patents for insulin, and the same year Banting and MacLeod were awarded the Nobel Prize in medicine. Banting, Best, and Collip would go on to sell their patents of the drug to the University of Toronto for $1 each. When Banting sold his patent, he mentioned that “Insulin does not belong to me. It belongs to the world.”
So how can a nearly 100-year-old drug be sold for upwards of $400 per 3mL vial? In the United States alone there are only three manufactures of the drug. Those companies are: Eli Lily - based in Indianapolis, Indiana, USA, Novo Nordisk - based in Bagsværd, Denmark, and Sanofi - based in Paris, France. These three corporations hold the patent, the same patent that Banting, Best, and Collip sold, and hold strict guidelines to renew the patent every year. This, in turn, gives the companies an oligarchy to the manufacturing and distribution of the drug. Meaning if another pharmaceutical company were to release a generic drug of insulin it would get shut down because the patent owners hold say over who distributes the drug. Insulin in the U.S. is also marked as a biologic compound, meaning it is made using certain types of cells to produce a certain protein. Insulin is also listed as a luxury drug, even though it is medically necessary in order to survive.
I recently spoke with T1International trustee James Elliot, based in Toronto, Canada, and Chloe Moorhad, based in the United Kingdom, to discuss the global price difference pharmaceutical drugs, and how each country has taken different measures during the COVID-19 lockdown. “Your friends have T1D. Your family has T1D whether or not you want to acknowledge that. They [insulin manufacturers] are not your friends, they are not your family. These are multinational corporations… selling insulin that costs $3 a vial to make is made by the metric ton and they’re selling that vial for $300-$500. People need to get real, you can’t replace your friends and family when they’re gone, and they are going, they are dying
When asked what he would tell diabetics in America, Elliot replied, “Your friends have T1D. Your family has T1D whether or not you want to acknowledge that. They [insulin manufacturers] are not your friends, they are not your family. These are multinational corporations… selling insulin that costs $3 a vial to make is made by the metric ton and they’re selling that vial for $300-$500. People need to get real, you can’t replace your friends and family when they’re gone, and they are going, they are dying.”
This past month with the help of Nicole Smith-Holt and advocates in Minnesota, the Alec Smith Bill was passed. The Alec Smith Emergency Insulin Bill (HF 3100), “enables people with diabetes in Minnesota to access an emergency 30 day supply of insulin for a $35 copay.” With this bill enacted, it offers a safety net for those who run out of their prescribed insulin before it is time to refill. The passage of the bill also protects those who are underinsured, or uninsured and those with high co-pays on Medicare. In order to qualify for the program, MN residents, “must be at or under 400% of the federal poverty level, which translates to $51,000 for individuals.” Nicole stated that “If this had existed three years ago, Alec would still be alive. It has been a long, hard fight, alongside dedicated advocates across the state, but my family and I can rest easier knowing that lives will be saved through this legislation. While it is a truly huge step forward, we know this isn’t the end. Legislators and patients can also rest easy themselves knowing that the fight continues until every single person can access affordable insulin sustainably.’’