The economic hardship caused by the coronavirus pandemic has forced many people with diabetes to ration insulin, the hormone that moves sugar out of the bloodstream and into the cells for energy. 

For millions of Americans with diabetes, obtaining insulin on a monthly basis was challenging enough before the pandemic. The cost of insulin medication varies, depending on various factors such as what type of health insurance plan a person with diabetes carries. Not all health insurance plans cover long-acting insulin pens (and other delivery methods), which can cost several hundred dollars or more a month out of pocket. 

According to the American Diabetes Association (ADA), a third of people with diabetes who were working before the current pandemic have lost some or all income, along with the health insurance they relied on in order to obtain insulin medication. 

Lower income Americans living with diabetes have been hit especially hard. Statistics from the ADA reveals half this group has lost some or all income. In addition, 7 out of 10 self-employed Americans living with diabetes have lost some or all income. 

In total, the economic impact from the pandemic has made 18% of Americans with diabetes unemployed (as of figures released in August). Consequently, nearly 35 million Americans with diabetes are now vulnerable to developing poorer health outcomes. 

The Lethal Cost Of Skipping Or Rationing Insulin 

Because of the combination of the high cost of insulin medicine and the economic fallout from the pandemic, a quarter of people with diabetes are rationing insulin or skipping doses, according to a survey of 5,000 people conducted by the diabetes online resource, dQ&A. 

Skipping or rationing insulin doses can produce fatal consequences. It can lead to diabetic ketoacidosis, a state of precipitously-high blood sugar levels. The condition can lead to organ failure, coma or death. Even before the pandemic, several people died because they couldn’t afford to take their complete insulin doses. 

Secondly, skipping or rationing insulin is associated with a higher risk of dying from the novel coronavirus. People with diabetes are more at risk of dying from SARS-Co-V2 to begin with. In fact, among hospitalized Covid patients, the mortality rate for those with diabetes or high blood sugar was 29%, compared with 6% for those without diabetes. 

According to the Los Angeles Times, the risk of dying from the disease is especially higher for people who have trouble controlling their blood sugar. 

“Brother, Can You Spare Some Insulin?”

“Brother, Can You Spare A Dime?” is one of the most iconic songs from the Great Depression. Nearly a century after that epoch, some people with diabetes are asking their fellow insulin-dependent brethren for a life-saving handout of a different kind. 

Stories abound (like this one) of people unable to afford insulin medication asking other people–sometimes complete strangers–if they can spare a vial or pen, the latter of which should never be shared, according to an article in Diabetes Care, which is the journal of the ADA. “Backflow of blood and other biologic material into the insulin cartridge or reservoir can occur after injection. For this reason, insulin pens, like other injection devices, must never be used by more than one person,” writes the article co-authors, who add that the risk of contamination is present even if the needle is changed. 

Another saving grace for those with diabetes has been the generosity of doctors, who accommodate patients faced with economic hardship by donating insulin samples. 

“Priced Out Of A Lifesaving Drug”

Roughly a year before the pandemic, Dr. Kasia Lipska, M.D., who is an endocrinologist and research scientist at the Yale School of Medicine, testified before the House Committee on Energy and the Commerce Oversight and Investigations Subcommittee. The hearing was titled “Priced Out of a Lifesaving Drug: The Human Impact of Rising Insulin Costs.” (Read Lipska’s transcript here.) 

Lipska first provided the Committee with statistics from a survey of 199 patients conducted in 2017 at the Yale Diabetes Center. The survey revealed that like the larger study of 5,000 people, approximately 25% of participants reported using less insulin than prescribed—specifically because of cost. Insulin rationing was common across all of the different prescription coverage plans and across most demographic factors. Not surprisingly, patients with annual income levels below $100,000 per year were more likely to ration insulin compared with patients with incomes above this level. 

Insulin-Rationing Type 2 Patients More At Risk

Being dependent on insulin is more commonly associated with type 1 diabetes, which accounts for roughly only five percent of all diabetes cases in the U.S. The ADA says that 1.25 million Americans have this autoimmune disorder, in which the beta cells of the pancreas are damaged and therefore unable to produce insulin. Each year, an estimated 40,000 Americans are diagnosed with type 1 diabetes. 

With type 2 diabetes, many people living with the condition are still able to produce insulin, even if their body has become resistant to it. However, for some people with more severe cases of type 2 diabetes, daily insulin is required. And if somebody with insulin-dependent type 2 diabetes can’t afford to buy the synthetic hormone, it places them at greater risk for complications. 

The Economic Costs Of Unaffordable Insulin

According to statistics provided by Dr. Lipska’s testimony before the Committee, direct medical costs associated with diabetes were estimated at $237 billion in 2017. A study conducted at an inner-city hospital shows that insulin discontinuation was the leading cause of recurrent hospital admissions for diabetic ketoacidosis. Among patients who stopped insulin, 27% reported they lacked money to buy insulin and 5% were stretching their supply. 

Lipska says that these hospital admissions might have been avoided with adequate access to affordable insulin. In her testimony, Lipska points to another study that claims greater adherence to diabetes drugs could lower hospital use by 13% and could save nearly $5 billion annually. Nearly 700,000 emergency department visits and over 340,000 hospitalizations could be avoided every year if the cost of diabetes drugs were lowered, the study concludes. 

Why Has The Cost Of Insulin Skyrocketed?

According to Lipska’s testimony, insulin, which was discovered a century ago, costs about seven times more than it did two decades ago. And the cost of some insulin drugs that haven’t changed at all in terms of innovation, have increased by more than 10-fold. For instance, the price of Humalog, a popular fast-acting insulin, cost just $21 per vial in 1996. Today, it costs over $250 a vial.  

Insulin was supposed to be a drug accessible to all who needed it. In 1923, the three researchers who discovered insulin sold their patent to the University of Toronto for $1 each. In doing so, says Lipska, the co-discoverers sought “not profit but rather publication of their process, with the hope that others would be able to benefit from it;” the co-discoverers hoped “no one could secure a profitable monopoly.” 

Unfortunately, insulin has become nearly just that, with prices determined by just three makers. This will be addressed shortly. But first, back to the origin story of insulin…

Shortly after the discovery of the blood-sugar-controlling hormone, Lipska says that to maintain quality control, the University of Toronto partnered with drug company Eli Lilly to allow for more large-scale production of insulin in the U.S. 

However, even before the middle of the 20th century, corporate greed undermined the discoverers’ intentions of making insulin affordable for all. In 1941, a federal grand jury indicted Eli Lilly for illegal price fixing. Over seven decades later, only Eli Lilly and two other drug companies—Novo Nordisk and Sanofi Aventis—produce insulin in the U.S. 

The three manufactures, says Lipska, blame the cost of insulin on companies that manage prescription drug benefits (known as pharmacy-benefit managers or “PBMs”), wholesalers, as well as high-deductible insurance plans, to name a few culprits. 

“But the bottom line is that drug prices are set by drug makers. The list price for insulin has gone up dramatically – and that’s the price that many patients pay. This is what needs to come down. It’s as simple as that,” counters Lipska in her testimony. 

Drug makers pocketed the largest share of drug expenditures, and were the biggest beneficiaries of high drug prices, she adds. 

Do Patient Assistant Programs Help?

If a person has trouble affording insulin, the website, InsulinHelp.org offers a lifeline on first impression. The contact information for insulin assistance programs established up by Eli Lilly, Novo Nordisk and Sanofi is listed with a promise that “Help with insulin is only a phone call away.” 

However, Lipska, in her testimony, claims that these patient assistance programs “Do little more than provide a public relations benefit.” The criteria established by the drug makers makes it difficult for many people to be eligible to receive help, she suggests. 

Why Does The Cost Of Insulin Vary?

In short, it depends on the dosage and type of insulin and delivery method (pen, vial, pump, jet injector, inhaler) and the cost of co-pays. Factors also include the speed at which the drug takes effect as well as the duration. 

Is Anything Being Done To Lower Insulin Costs? 

Eleven states have enacted price caps not exceeding $100 per month since the start of the pandemic, reports EverdayHealth.com. These same 11 states in 2019 also capped the amount insurance companies can set up as co-payments for insulin. 

If a federal price cap on insulin were to be enacted, it would give millions of economically-challenged people with diabetes much needed peace of mind.