“Type 1 diabetics cannot survive without insulin,” is the first thing Michelle Litchman, a nurse practitioner at the University Of Utah, says to me during our interview. She launches into an explanation as to why this is, but I stop her before she can continue, I’ve been living with Type 1 diabetes for the past 22 years. 

I was only three years old when my Mom first noticed something was wrong. I had an unquenchable thirst, was perpetually exhausted, and my breath had an odd sweetness to it―hallmark signs that I was likely suffering from undiagnosed diabetes. She took me to the doctor, I was diagnosed later that day, and my entire life changed.

Unlike Type 2 diabetes―a disease where the body doesn’t produce enough insulin to keep up with demand due to poor diet or obesity―my diagnosis meant that my body was attacking its own pancreas and could no longer produce any of the insulin needed to convert carbohydrates into usable energy (hence my feelings of exhaustion). 

Diet and exercise are usually enough to help patients manage Type 2, but I would have to monitor my blood glucose levels with a meter and inject insulin every time I ate a meal for the rest of my life.

An incredible discovery

Until the discovery of insulin in 1921 by University of Toronto scientists Sir Frederick G. Banting, Charles H. Best, and JJR Macleod, patients with Type 1 diabetes relied on a starvation diet to keep their readings at healthy levels. 

On the diet, patients could only eat scant helpings of protein and vegetables with only a few grams of carbohydrates (bread, rice, other grain-based foods) to keep the body functioning. They were expected to live an average of three years, and―when their blood-glucose levels became so high they were rendered comatose―they were placed in a separate hospital ward to await their death. 

In January of that year, when Banting and his team of scientists began injecting their comatose patients with their newly discovered medication, they discovered that it would rouse their patients from their comatose-state. Within hours of injection, most of their patients regained consciousness and their blood glucose levels returned to normal. Even better, patients with diabetes were now expected to survive into adulthood. 

Following the discovery, Banting and his team sold the intellectual property rights to their insulin method for $3, priced low enough that diabetics everywhere would have access to the medicine that they needed. Without Banting’s discovery, I wouldn’t have survived past my third birthday, and I never would have been able to enjoy foods such as non-diet sodas, pizza, pasta, or cake. 

However, despite the now widespread availability of the medication, prices have increased, forcing many diabetics to go without.

The cost of a life-saving medication

Though my Type 1 diagnosis required an initial adjustment―how do you explain to a three-year-old that she’s going to have to do insulin injections every time she eats?―the disease has been relatively easy for me to live with. At least, it used to be. 

I’m turning 25 this year, and like thousands of young adults throughout the country, I will be kicked off of my parent’s insurance and forced to claim financial responsibility for all of my necessary medical supplies. As soon as that happens, I won’t be able to afford the medication I am relying on to live.

And I am not alone. A recent study published in JAMA Internal Medicine claims that one in four diabetic patients will struggle financially to purchase their medicine, and those living with the disease can’t just pick a less expensive brand to use. Pharmaceutical companies Eli Lilly, Novo Nordisk, and Sanofi produce most of the country’s insulin, and surprise! They are all similarly expensive.

It’s worth noting that insulin’s unaffordability comes not because we diabetics are poor budgeters planning to go without health insurance, it comes because the cost of insulin has increased by over 1,000 percent since it’s discovery. According to Business Insider, Humalog (manufactured by Eli Lilly) cost $20.82 per vial in 1996 and now retails around $255.40 (a 1,124 percent price increase). Novolog (manufactured by Lilly rival Novo Nordisk) was listed at $39.75 when it first entered the market in 2001. It now goes for $255.40, the same price as Humalog. 

On average, a diabetic uses around two vials of fast-acting insulin every month. That’s $510.80 per month total. And that doesn’t include the monthly cost of syringes, glucose testing supplies, and other helpful technologies like a CGM (continuous glucose monitor) or a pump. The dramatic cost increase for insulin has left one in four diabetics to ration their own supply to make ends meet despite the fact that doing so is not recommended by a physician and can cause diabetic ketoacidosis―a life-threatening condition. 

Three people in 2017, three people in 2018, and at least four more in 2019 died from insulin rationing―and those are only the reported cases. 

Who’s at fault for high insulin costs?

To cope, diabetics are creating black market groups on various social media sites to trade with one another for the supplies they need―I am a member of several in Salt Lake City. Because these groups are solely reliant on supply donations from other diabetics, they usually only provide a last-minute solution for patients in dire need. “[Some of] my own patients are really struggling,” says Litchman, adding that it isn’t just diabetics turning to black market groups for their own medical supplies, it’s a variety of other patients, too. 

“People want to take care of themselves, they just need the means to be able to do so, and I think a lot of [diabetics] get labeled as not wanting to care for themselves, but what we see is, most people want to [care for themselves] they just need to be able to do so in a reasonable way.”

“Because of the dramatic cost increase, many diabetics are being forced to ration their own insulin supply.”

While those black market insulin groups are providing an immediate solution for patients in desperate need of their medication, they don’t do anything to address the underlying issue of insulin affordability in general. The issue, I’m told, is extremely multifaceted. “Insulin, in particular, is a very competitive market,” says Priscilla VanderVeer, vice president of public affairs at PhRMA, the group that represents the leading biopharmaceutical companies throughout the nation. “And so, what [biopharmaceutical companies] do is provide significant rebates and discounts to the folks in the middle of that supply chain. 

“Oftentimes, particularly with insulin because there is so much competition, there are significant discounts [offered to the insurance companies and pharmacy benefit managers] that are like 70 percent off the list price. So [insurance companies] are paying a third of the actual lowest cost of the drug.”

This surprised me. In my conversations about the issue, many were eager to blame the cost of the drug on the pharmaceutical companies. However, it’s actually the insurance companies and pharmacy benefit managers (PBMs) such as CVS Health and Express Scripts that set the prices for consumers.

“It’s really easy to ask ‘why does insulin cost $200 per vial?’ Well, it doesn’t. It’s not costing anyone [in the supply chain $200] except for the patient,” says VanderVeer. “And if that patient is paying $200, [the pharmaceutical companies] are not getting that. We’re only getting the amounts that the insurance company and pharmacy benefit manager negotiated with [the pharmaceutical companies.]”

In the Follow The Dollar example released by PhRMA, if insulin costs patients around $400 every month (for two vials), the manufacturer receives $88 of that, the distributor gets $2, the pharmacy providing the medication makes $25, the pharmacy benefit manager gets $54, and the health insurance company makes about $292. It’s broken down in a similar manner for almost every other drug on the market. 

That’s insanity. It’s easy to see where the system is broken. 

Some insurance companies are trying to help

Ideally, the PhRMA team would like to have it mandated that health insurers share those discounts and rebates with the patients at the pharmacy counter. According to PhRMA, doing so would reduce out-of-pocket costs for some patients by as much as $830 per year. “We’ve done the math,” says VanderVeer “It would only increase premiums by about one percent.” 

While a mandate on pricing would absolutely help solve the problem, it won’t be on the ballots any time soon (though a recent law proposed in Utah would cap copays for insulin at $30). But there are insurance companies, such as Utah-based MotivHealth, who are challenging the health insurance status quo for the benefit of their patients. 

“Diabetes can cost thousands of dollars,” says MotivHealth EVP, John Anderson. “When somebody gets a Type 1 [or Type 2] diagnosis, that can be life-changing, not just from a health standpoint but from a finance standpoint, too.”

To help MotivHealth patients save money on their needed diabetic supplies, the company pairs qualifying patients up with various programs, based on income, outside of the United States, where insulin costs are cheaper and often regulated. “We have them go sign up as an individual and then we help reimburse that. It saves everybody thousands of dollars,” he says. “[So, for example, if you sign up for these programs we paired you with] you went from paying $2,500 a month to $250 and for doing that, we’ll pay for [your medication] 100 percent.”

It sounds almost too good to be true, but Anderson assures me it’s not. “It’s not always free, but it can be free. It’s significantly cheaper either way,” he says and he attributes it all to their mission. “We have a basic philosophy that healthcare can be cheaper, especially if you can show people prices.”

Making insulin at home

Unfortunately, not everyone has access to insurers like MotivHealth, so a local entrepreneur and microbiology student decided to come up with an even more innovative solution to the problem―and he’s doing so in the spare bedroom of his Provo apartment.

Connor Behr’s older sister has diabetes. Since he was young, he’s listened to his family talk about the lack of affordability for the medications keeping his sister alive, and he decided to do something about it. “I always see petitions coming around for things like putting a cap on insulin… but whenever these come around I always just think of Whack-A-Mole,” he says. “Like we are just smacking down a problem here, and it’s causing [a new problem] to pop up somewhere else. It’s not a solution.”

Equipped with a love of all things microbiology, Behr came up with a solution. Using a naturally occurring protein called physarum, he came up with a new method that would remove an entire step of the insulin production process, saving ample manufacturing time that would eventually translate into savings for patients―and he’s only 19 years old.

Titled the PhyR Project, Behr’s method produces insulin in a manner similar to that of the pancreas, which may provide relief for other diabetes-related illnesses (such as cataracts, spots of unsightly under-the-skin insulin buildup, and heart disease) that eventually plague most patients. And one day, he’s hoping to develop a machine that would give diabetic patients the power to make their own insulin right at home, completely eliminating the need to work through a pharmacy.

His proposed machine would be no bigger than a microwave and only requires certain fluid solutions to continue making insulin. The idea is that eventually, patients could buy a machine for themselves and produce insulin on-demand in their own homes whenever they needed it. They wouldn’t run the risk of running out, and their supply would be much more affordable. 

“On average, a diabetic uses around two vials of fast-acting insulin every month. That’s $510.80 total.”

Of course, an idea this big requires some pretty big funding, too. Currently, Behr is funding 100 percent of his project through GoFundMe (search for the PhyR Project). The money raised goes toward new lab equipment―that Behr purchases secondhand for a discount and then fixes up himself―and will eventually go toward FDA regulation of his process and product.

Unfortunately, that too is expensive. Though Behr has received plenty of interest from investors in his insulin-making process, he is hesitant to take on any venture capital for fear that he would become just another manufacturer controlling the supply. “When I started this out, I thought it was going to be a lot less complicated than [it actually is],” he says. Unfortunately, “it’s complicated because there are no other things on the market that are similar.”

But he’s only 19, and there’s the hope that one day, in the not-so-distant future, his vision will come to fruition, and diabetics like myself will have easy, affordable access to the drug that keeps saving their lives every day.