Congress is suddenly abandoning people with diabetes

Efforts to lower the sky-high costs of medicines have stalled along with President Biden’s sweeping economic plan, even though rationing is more common than the health care system wants to admit.

Diabetes is now the most expensive chronic illness in America. 

Studies from Yale University and T1International among others found that 25 percent of people with diabetes in the U.S. who depend on insulin to live, ration the medication due to cost.

This dangerous practice results in devastating health complications and emergencies, including death. 

As insulin prices have climbed since 2012, stories have emerged of patients with diabetes rationing their insulin. They either take smaller doses or they skip doses. Sometimes, the results are deadly: Deaths have been reported of young adults who were rationing insulin, including those who had ‘aged off’ their parents’ insurance plans.

In testimony before the House Committee on Energy and Commerce Oversight and Investigations Subcommittee, Kasia Lipska, MD, MHS—the senior author of a study published by authors at Yale Diabetes Center—told the story of a clinic patient, a woman in her mid-20s with Type 1 Diabetes, who “deliberately let her sugars run high so she could be admitted to the hospital and get free samples of insulin upon discharge.”

“We strongly support allowing Medicare to negotiate cheaper drug prices,” said Shaina Kasper and Aly Bancroft in a column published in the Hill, a news website popular in Washington DC. “People with diabetes deserve to benefit from this needed change as much as anyone else. But the latest reconciliation package backtracks and no longer proposes specifically negotiating insulin prices.”

Kasper and Bancroft said advocates who have fought for insulin access “were shocked, then outraged” that congressional Democrats walked away from legislation that required insulin to be subject to price negotiations. 

Kasper is a patient with type 1 diabetes and the USA Policy Manager for T1International, an organization that provides advocacy training and support to diabetes patient advocates around the world.

Bancroft is a patient with type 1 diabetes and the Campaign Coordinator of the Access to Medicines Program at Public Citizen, a nonprofit consumer advocacy organization.

Both are member groups of Make Meds Affordable.

“Unaffordable insulin is a symptom of a system that keeps out competition, empowers drug corporations to set higher and higher prices, and has failed patients and communities,” said Kasper and Bancroft. “We demand sweeping and structural change that makes all medications more affordable.”

The Build Back Better bill that’s been stalled by Sen. Joe Manchin contains toward the bottom of page 2,355, amid all the political jargon, the first mention of the word “insulin.” 

For a lot of diabetics — whose pancreases do not secrete enough or any insulin and may require insulin injections to regulate their blood glucose — its inclusion in Build Back Better was a big deal.

That’s because the bill would have limited monthly out-of-pocket copays to $35, in what would’ve been the most transformative legislation aimed at addressing the costs of insulin ever passed by Congress. 

In the U.S., more than 34 million people have diabetes and more than 7 million people require insulin. Over the past decade alone, the cost of the hormone they need to stay alive has tripled

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