During the Covid-19 pandemic, Erin Connelly had to ration insulin while transitioning to a different health insurance plan. When Connelly heard the Biden administration was planning to cap the price of the life-saving drug, she was delighted. She was soon to be disappointed.

The prices of insulin has soared in the US in recent decades and is more than eight times higher in the US than in 32 comparable, high-income nations, according to a Rand Corporation study.

With an average list price of $98.70 per unit in the US, compared with $7.52 in the UK, US insulin sales account for nearly half the pharmaceutical industry’s insulin revenue, though the US makes up only about 15% of the global market.

Many diabetics require several vials of insulin a month, in addition to the costs of medical supplies and monitoring equipment. A 2022 study by CharityRx found 79% of Americans with diabetes or who care for someone with diabetes reported taking on credit card debt to pay for insulin, with an average debt of $9,000. One in four Americans have reported rationing insulin due to the high costs, which can be fatal.

As part of the Inflation Reduction Act passed in the Senate this week, the Biden administration proposed a $35 monthly cap on the cost of insulin in the private market. But the proposal was blocked by Republicans. Connelly, a type 1 diabetic from Illinois who was diagnosed at the age of 33, said she was “devastated”.

“I believe the profit margin on my life must be really good, otherwise, we would be a bigger focus and a bigger part of these healthcare negotiations,” she said. “People are actually dying from this and it’s beyond price gouging. They’re holding us for ransom.

“As we see things like Covid and different viruses come in and attack bodies in ways that we don’t understand, we’re seeing higher rates of people with type 1 diabetes later in life like I was, so this should be a primary concern for public health officials,” she said.

Thanks to budgetary rules the proposal needed 60 votes to pass in the Senate. It received 57, with all Democrats and seven Republicans voting in favor of the proposal, though the Senate parliamentarian did allow the cap on co-pays for Medicare, the government health insurance program for those 65 and older.

The vote incited criticism against Republicans from diabetes advocates who have been pushing for legislation to cap the cost of insulin in the US.

But even a cap on private insurance co-pays wouldn’t have affected the real price of insulin in the US. The proposal would merely have limited the co-pay for the price of insulin to $35 for those with private insurance, with insurance expected to cover the difference. It would also probably have resulted in increases for insurance premiums. Those without insurance would still have been expected to pay exorbitant prices for insulin.

“The co-pay caps aren’t price caps. All they effectively do is if you have insurance or Medicare, the $35 is your maximum co-pay,” said Laura Marston, co-founder of the advocacy group the Insulin Initiative and a type one diabetic. “That doesn’t change the underlying price of what someone without insurance pays for insulin, which in and of itself is concerning and scary from a patient’s point of view because I know first-hand how hard it can be as a type 1 diabetic in this country to get and keep health insurance.”

Marston pointed out that pharmaceutical companies such as Eli Lilly have supported the insurance co-pay caps. While she was disappointed by the failure of the co-pay cap proposal, even if she feels it fell short of a real solution to the problem, she is also concerned about the lack of political will to take on the pharmaceutical industry and cap the actual prices of insulin.

More than 100,000 Americans died in 2021 from diabetes. More than 30 million Americans are diagnosed with type 1 or type 2 diabetes and over 7 million require daily insulin – all type 1 diabetics and many type 2 diabetics.

For now diabetics and their families who were hoping for some relief are back where they started – paying exorbitant fees for a life-saving medicine.

“We’ve been trying to no avail to get an actual insulin price cap introduced that would say to insulin makers, you cannot charge more than say, we’ll just say $20 a vial, or basically you cannot charge more than what you charge in other countries for insulin. And it felt like it fell on deaf ears as soon as this co-pay cap was introduced,” said Marston. “I don’t know why they introduced something seemingly half hearted, not really designed to be a solution to the problem.”