‘It just seems like a big scam’: diabetics criticize Biden’s insulin proposal | US healthcare | The Guardian

Samia Chowdhury of Ontario, California, saw her work hours in the restaurant industry dwindle from full-time to less than 10 hours a week when Covid shutdowns began in the US in March 2020.

But the loss of work was not her only problem. As a type 1 diabetic since she was 12, Chowdhury could not afford health insurance after losing most of her work hours and couldn’t get on Medicaid through California. Instead, she relied on visiting medical clinics for insulin prescription refills when she could afford to do so and mutual aid from other diabetics around the US.

“I could barely scrape together the $35 for the visit,” said Chowdhury. “I could not make ends meet. I was essentially choosing either a roof over my head or my health insurance.”

She relied on the clinics for doctor visits, lab work, and had to ration insulin and supplies while struggling to make ends meet with rent and other bills.

“Because I have to take the quick-acting insulin more often when I eat, that would be the only prescription I would pick up. The only way I can describe the effects on someone’s body is it feels like your whole body is acidic, but at least you’re getting to tomorrow,” she added. “I was making a vial last for up to two months.”

She also had to go without other supplies, such as testing strips, and reused syringes until they became too dull to use any more. From rationing insulin during the pandemic, to previous periods in her life when she didn’t have access to insulin, Chowdhury has experienced significant side effects such as kidney issues and eye issues. In October, Chowdhury was able to afford health insurance again after getting a new job, but still pays co-pays for doctor visits and prescriptions and is working to recover from the credit card debt she accrued while trying to get by through the rest of the pandemic.

As part of the Biden administration’s Build Back Better plan the co-pay for insulin would be capped at $35 for individuals who have health insurance. But the legislation is currently in a perilous limbo in Congress and under serious threat after being blocked by centrist Democrat Joe Mancin. Even if it survives Manchin’s opposition, or emerges in a different form, those who depend on insulin say it may not help them enough.

Type 1 diabetics, who cannot produce any insulin and require it to survive, have criticized the proposal and messaging around it, citing the insurance cap includes loopholes, does not impact individuals who do not have health insurance coverage in the US, and doesn’t address the issue of US pharmaceutical companies price gouging the sales price of insulin, while people in other industrialized nations are charged a fraction of US prices.

“It just seems like a big scam for the private insurance companies,” said Ginni Correa, a 27-year-old type 1 diabetic in 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 frequently been forced to ration insulin or insulin supplies since she turned 18 and aged out of a state health plan when she went away to college. It’s a constant worry she has to take into account because of health insurance tied to her employment, and the out of pocket costs even with insurance, from deductibles to co-pays for doctor visits, labs, insulin and insulin supplies, and figuring out what insurance companies will cover.

“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 said.

According to the CDC, 34.2 million Americans, more than one out of every 10 Americans, has diabetes, with Native Americans, Hispanic and Black people disproportionately affected and less likely to be covered by health insurance.

1.4 million US adults aged 20 or older reported having type 1 diabetes and using insulin, in addition to 187,000 adolescents and children under 20 who have type 1 diabetes. This number is projected to grow to 5 million Americans by 2050.

Individuals with type 1 diabetes require several daily doses of insulin, while type 2 diabetics require varying dosages, as these individuals are able to produce insulin but cannot rely on it to control their blood sugar levels.

One in four type 1 and type 2 diabetics have rationed insulin due to high costs in the US, and according to an American Diabetes Association survey, nearly one-third of diabetics have skipped doctor appointments or paying bills in order to afford insulin. Americans with diabetes are faced with 2.3 times greater healthcare costs. American adults and children with type 1 diabetes spend an out of pocket average of $2,500 annually for healthcare, ranging from high costs of insulin to expensive supplies such as insulin pumps, syringes, and glucose monitors.

It’s the most expensive chronic disease in the US.

The price of insulin in the US has soared over the past several decades, and far exceeds costs for the same type of insulin in other countries. One vial of Humalog insulin produced by Eli Lilly was priced at $21 in 1999; by 2019 it cost $332, over a 1,000% increase.

The average list price of one unit of insulin in the US is $98.70, compared to $12 in Canada and $7.52 in the UK. The US consists of aboutr 15% of the global insulin market, but accounts for nearly half of the pharmaceutical industry’s insulin revenue.

These high costs persist despite the founders of insulin selling the patent for $1 in 1923 because they viewed it as unethical to profit from a lifesaving drug.

Today in the US, three pharmaceutical companies, Novo Nordisk, Sanofi-Aventis and Eli Lilly control most of the insulin market.

“They’re not actually going after the list price with the pharmaceutical companies. So the rest of that money has to come from somewhere,” said 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 husband are type 1 diabetics. On Christmas Day in 2018, her family lost her husband’s sister, Meaghan Carter, 47, who passed away due to ketoacidosis which occurred due to rationing insulin through a six-month period where she was in between jobs.

During the Covid pandemic, Patterson’s family has struggled to afford the medical costs associated with diabetes and her husband’s disability, which worsened as his hip replacement surgery was delayed for months, while they were fighting with their health insurance company to try to get coverage for the proper wheelchair her husband needs.

She caught Covid in December 2021 while awaiting surgery to repair a torn meniscus she incurred while working and fought for weeks to process and start receiving short-term disability payments.

“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,” added 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.”