More than one in every ten Americans has diabetes, according to the Centers for Disease Control and Prevention (CDC), with Native Americans, Hispanics, and Black people being disproportionately afflicted and less likely to be covered by health insurance coverage.
In addition to the 1.4 million adults aged 20 and over, there are 187,000 adolescents and children under the age of 20 who have type 1 diabetes and need insulin. By 2050, it is expected to have increased to 5 million people in the United States.
Individuals with type 1 diabetes require multiple daily doses of insulin, whereas type 2 diabetics require varying dosages of insulin because they are able to produce insulin but are unable to rely on it to control their blood sugar levels. Type 2 diabetics are more likely to have high blood sugar levels than type 1 diabetics.
As part of the Biden government’s Build Back Better proposal, the co-pay for insulin for people with health insurance would be restricted at $35. As a result of the opposition of centrist Democrat Joe Manchin, the proposal is currently in a precarious state in Congress and is at significant risk of being attacked. Although it may survive Manchin’s opposition, or may appear in a different form, people who rely on insulin believe it will be insufficiently beneficial to them.
Type 1 diabetics, who are unable to produce insulin and therefore rely on it for survival, have expressed dissatisfaction with the proposal and the messaging surrounding it, claiming that the insurance cap contains loopholes, does not affect individuals who do not have health insurance coverage in the United States, and does not address the issue of US pharmaceutical companies overcharging for insulin, while people in other industrialized countries are charged a fraction of the prices charged in the United States.
“It just seems like a big scam for the private insurance companies,” says Ginni Correa, 27, a type 1 diabetic from Jacksonville, Florida. “Our lives are being used for propaganda. Wording is very important. Because when you tell the general public that you’re capping the price of insulin, that’s deceitful because millions of Americans aren’t insured and the majority of diabetics who are insured, they still can’t afford the cost and it’s going to go to the premiums.”
Correa has been forced to limit insulin or insulin supplies on a regular basis since she turned 18 and reached the age of eligibility for a state health plan when she left for college. The fact that her employer provides health insurance, as well as the out-of-pocket costs she incurs even with insurance (deductibles, co-pays for doctor visits, lab tests, insulin and insulin supplies, as well as figuring out what insurance companies will cover), makes it a constant source of concern for her.
“These are things that aren’t addressed when it comes to the Build Back Better plan and the $35 co-pay cap, because even if you are fortunate enough to have insurance at the time, insurance isn’t something that’s necessarily stable in this country,” she adds.
One in every four type 1 and type 2 diabetics in the United States has rationed insulin due to high costs, and according to a survey conducted by the American Diabetes Association, nearly one-third of diabetics have skipped doctor appointments or failed to pay bills in order to save money on insulin. Americans with diabetes suffer 2.3 times higher healthcare costs than the general population. Adults and children with type 1 diabetes in the United States pay an average of $2,500 per year out of their own pockets for healthcare, which includes everything from high insulin prices to pricey consumables such as insulin pumps, syringes, and glucose monitors.
In the United States, it is the most expensive chronic disease.
During the past several decades, the cost of insulin in the United States has risen dramatically, and it now much exceeds costs for the same type of insulin in other nations. One vial of Humalog insulin, manufactured by Eli Lilly, cost $21 in 1999; by 2019, it was worth $332, representing a more than 1,000 percent rise in price.
Insulin costs $98.70 on average per unit of medication in the United States, compared to $12 in Canada and $7.52 in the United Kingdom. Even though the United States only accounts for roughly 15 percent of the worldwide insulin market, it generates nearly half of the pharmaceutical industry’s insulin revenue.
These high costs remain despite the fact that the insulin’s inventors sold the patent for one dollar in 1923 because they believed it was unethical to profit from a lifesaving medication.
Today, three pharmaceutical firms, Novo Nordisk, Sanofi-Aventis, and Eli Lilly, control the vast majority of the insulin market in the United States.
“They’re not actually going after the list price with the pharmaceutical companies. So the rest of that money has to come from somewhere,” says Mindi Patterson of Dayton, Ohio. “It only takes one illness, one car accident, to put people in a position where they have to pay completely out of pocket.”
Her two sons and her husband are all diabetics with type 1. In 2018, her husband’s sister died of ketoacidosis because she cut back on insulin during a six-month job search. Meaghan Carter, 47, died on Christmas Day.
In the midst of the Covid pandemic, Patterson’s family has struggled to pay for the medical expenses associated with her husband’s diabetes and disability, which has worsened as his hip replacement surgery has been delayed for months, while they have fought with their health insurance company to obtain coverage for the proper wheelchair her husband requires.
She was diagnosed with Covid in December 2021 while awaiting surgery to repair a torn meniscus she sustained while working, and she fought for weeks to have her claim processed and to begin receiving short-term disability benefits.
“I’m getting half of what my paycheck normally is through short-term disability and almost all of that is going toward medication for my family and supplies. I don’t have an extra $200 or more lying around that I can pay for insurance each month,” adds Patterson, who noted the insulin co-pay cap would have a minimal impact on her family’s healthcare costs. “It’s a band aid on an open, majorly gushing wound. It’s not enough.”
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