Forty-year-old Jennifer Walton was at the height of her career in crisis communications and living in Colorado.
When she was suddenly let go by her employer at the start of the pandemic, her first thought wasn’t “I need to look for a new job immediately.” It was “How much money do I have, and how much insulin have I hoarded?”
For Walton and 1.6 million other type 1 diabetics, insulin is as necessary as water, yet it’s one of the most expensive drugs in the U.S. For her and so many others, the everyday reality of hoarding or rationing insulin was exacerbated by the COVID-19 pandemic.
Diabetes affects how our bodies turn food into energy. When a non-diabetic consumes food, glucose levels spike and the pancreas releases insulin to turn that sugar into energy. Diabetics must inject insulin multiple times a day to keep glucose levels controlled.
“Uncontrolled glucose levels over time can lead to bad health problems such as heart disease, kidney failure, retinopathy, and even loss of limbs,” says Mihail Zilbermint, MD, expert in endocrinology, diabetes, and metabolism, and an assistant professor at Johns Hopkins School of Medicine. “Essentially any organ that needs blood supply is at risk of failure if you have diabetes.”
While insulin is the key to managing diabetes, many diabetics struggle to afford this life saving drug. “The price of insulin in the last 20 years has risen over 300%,” says Mariana Socal, MD, an associate scientist in Health Policy and Management at the Bloomberg School, forcing people like Walton to ration and hoard insulin, consequently leading to life-threatening conditions like organ failure due to high glucose levels over time.
According to the American Diabetes Association, people with diabetes are more likely to have serious complications from COVID-19, especially if their diabetes is not well managed. A study in the journal Diabetes Care found that “the odds of a COVID-19–related hospitalization and greater illness severity for patients with type 1 and type 2 diabetes are three- to fourfold higher than patients without diabetes.”
Zilbermint, who is an endocrine hospitalist, helps manage patients’ glucose levels, which are often hard to control when a diabetic is fighting off an infection. It doesn’t help that dexamethasone, a drug used to treat COVID-19, can raise blood sugar to dangerous levels. “Patients who had diabetes and developed a COVID-19 infection required enormous amounts of insulin,” says Zilbermint.
Zilbermint says that he saw an increase in complications in diabetic patients during the pandemic. Many were unable to afford insulin as a direct result of unemployment and loss of health care during the pandemic. For Walton, losing her job meant going from a co-insurance plan sponsored by her employer that cost about $50 a month to a COBRA premium plan that costs $650 a month.
“I was lucky in that I had a decent amount of savings, but COBRA decimated it,” said Walton. Walton said without her savings, she says, she probably would have gone into bankruptcy.
Not all are as “lucky” as Walton. A survey conducted by the American Diabetes Association found that 9% of diabetic patients could not afford medical care during the pandemic, 2% experienced disruption to their insurance coverage, and 50% could not regain coverage.
Walton dreads September 30, the day her COBRA coverage runs out. “For the last six months I’ve been hoarding insulin and picking up prescriptions as soon as I can, so that I can fill them as much as possible before September 30,” says Walton.
Some states have capped out-of-pocket copayments for insulin, but this offers little help to the Americans who’ve lost their jobs and their employer-sponsored health insurance during the pandemic. While the three insulin manufacturers—Novo Nordisk, Eli Lilly, and Sanofi—announced cost-sharing support during the pandemic, Socal says it’s hard to know if these programs are even working and how long they may last because these manufacturers are not accountable to anyone.
“There are valid reasons to believe that there is a gap between what [insulin] manufacturers announce and what they put into practice,” says Socal.
Is there hope that one day this essential drug will be affordable to all who need it?
Socal says many policymakers agree on the problem. The challenge is agreeing on the solution.
Grace Fernandez is a communications and marketing specialist in the Office of External Affairs at the Johns Hopkins Bloomberg School of Public Health.