Dan Hart lost his job as a bartender in Philadelphia, Pennsylvania, when the coronavirus pandemic hit in March, making it even harder to afford the insulin he requires as a type one diabetic.

Without health insurance for the past few years, Hart has relied on Walmart insulin at $26 a vial, while he continues trying to get health insurance through the state marketplace. His preferred insulin, out of pocket, would cost $1,500 a month.

His sister-in-law is currently running a GoFundMe campaign to help him cover insulin costs.

“This Walmart insulin is not what I need to live a healthy diabetic life, it’s just a lifeline. I have definitely caused damage to my body because it’s hard to regulate my sugar with this insulin, but it keeps me alive,” said Hart. “It’s really scary knowing that just to live day by day I always need insulin and companies are making profit over death. I try to not think about it, but there’s not one day I don’t.”

The Trump administration has touted several executive orders issued in May and July 2020 aimed at cutting the cost of insulin in the US. But diabetics and activists for affordable insulin argue the orders have accomplished little in reducing exorbitant costs for insulin in the United States as diabetics continue to struggle to afford the insulin they need to live.

According to a recent report published by the Rand Corporation, insulin prices in the US remain five to ten times higher than the prices of the same insulin in other countries.

In May 2020, the Trump administration announced changes for some medicare recipients to cap monthly copays for insulin at $35 a month, claiming the new model would provide an average out of pocket savings of $446 a year, with beneficiaries able to enroll into the new program if they aren’t currently for coverage in 2021. CEOs of Insulin manufacturers Eli Lilly and Humana praised the plan.

Trump signed another executive order aimed at high insulin costs in July 2020, directing federal health care centers to pass along discounts for insulin and epinephrine to certain low-income Americans, and another order aimed at permitting state insurance plans to allow for drug importation of insulin products made in the US, though the orders have yet to be implemented.

Trump claimed the orders will cut the price of insulin to “pennies a day” without acknowledging the limited scope of his orders, as diabetics are still struggling to afford insulin as costs remain high. During the first presidential debate, Trump falsely claimed his orders lowered insulin costs “so cheap, it’s like water”.

“The executive orders are very narrow in scope and don’t do anything for the root of the problem,” said John Tagliareni, leader of the Iowa Insulin for All chapter and a type one diabetic since 1998.

He explained the orders provide a small discount for some health clinics and rely on foreign governments, like Canada, that have negotiated affordable drug prices with insulin manufacturers.

“Those executive orders are political talking points, it’s not actual legislation,” added Tagliareni. “It does nothing on overall costs. It does nothing to the pharmaceutical companies for price gouging the American consumer because there’s no competition.”

Laura Marston, a diabetic since she was diagnosed at the age of 14 in 1996, argued the orders only help a certain percentage of diabetics, and do nothing for those uninsured or those who do not have a state regulated insurance plan.

“Federal price caps are the most expeditious problem of solving this crisis for everyone. When you need something like insulin 24/7 365 days a year to live, there can’t be hoops or preconditions, it has to be readily and easily accessible and affordable,” said Marston. “If I unhooked my insulin pump, I’d be vomiting in two to four hours and likely be comatose in 12 to 24. It’s that urgent of an issue for us.”

She’s used Humalog insulin since she was first diagnosed, and its retail price has climbed from around $21 per vial in 1996 to currently around $300 per vial. Marston and other advocates have pushed for federal price cap legislation at $20 per vial, based on what insulin manufacturers charge in other developed nations around the world. The estimated cost of manufacturing a single vial of insulin is $5.

Marston currently has health insurance through her employer, but noted the pandemic has shown that this support could and has changed in an instant for millions of Americans whose health insurance is tied to employment.

For many of the 26.9 million Americans diagnosed with diabetes, including nearly 1.6 million with type one diabetes who require several daily insulin doses, the struggle to afford insulin is a constant problem and the pandemic is likely making it worse.

If I unhooked my insulin pump, I’d be vomiting in two to four hours and likely be comatose in 12 to 24. It’s that urgent of an issue for us

Some 12 million Americans have probably lost their employer based health insurance during the pandemic, in addition to the 29.6 million Americans who had no health insurance coverage in 2019. Millions more could lose health insurance due to pre-existing conditions if the US supreme court ultimately overturns the Affordable Care Act when it hears a challenge to the law in November.

Jerry Murry, 63, of Indianapolis, Indiana, was diagnosed with type one diabetes 15 years ago.

Through his insurance, insulin and heart medication is covered up to $3,950 a year, which lasts him until April, when he is forced to pay out of pocket. When he reaches this point, he drives to Canada to purchase insulin with his wife, but has been unable to do so recently because of Covid-19.

“The heart medicine is $500 a month, my insulin is $900 a month, and my evening insulin I get from Walmart because I can’t afford anything else, and I go through about five vials a month at $25 per vial,” said Murry.

In Canada, Murry buys his insulin for $27 a vial, compared to $300 a vial he pays in the US. He was fortunate enough to find a mail order pharmacy in Canada, from which he currently pays $47 per vial to have it delivered to the US, but even at these reduced prices he’s forced to put his insulin costs on credit cards and try to cover those payments monthly.

“It’s unbearable. The will to live is on the forefront of my mind all the time just because of what I have to do to keep alive and nobody seems to do anything for us,” added Murry.

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