Personal Stories

Read personal stories from advocates who signed our letter.

 
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Before turning 26, Allie had to stockpile insulin.

The Affordable Care Act allowed adults to stay on their parents’ health plan until they turn 26. For people with diabetes, that insurance cliff can be deadly.

As Allie Marotta approached her 26th birthday, she began stockpiling insulin and preparing for dangerous peaks and valleys in her blood sugar. She had no other choice, she told BuzzFeed News—more than half of her income went to rent and student loans. Without insurance, just one of her two types of insulin cost nearly $800 a month.

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Insulin cost Nicole’s son more than half his monthly income.

When he turned 26 and could no longer be on his family’s health insurance plan, Alec Raeshawn Smith was forced to ration insulin. A month later—three days before payday—Smith died of diabetic ketoacidosis directly linked to his lack of access to insulin.

After his death, Alec’s mother, Nicole Smith-Holt, realized his insulin and supplies cost roughly $1,300 a month, more than half of Alec’s monthly income. “We realized that he had been taking less insulin and less often than he should, trying to make it stretch until he got his next paycheck,” Alec’s mother, Nicole Smith-Holt, told The Washington Post. Smith-Holt is now an activist for greater insulin access with T1International.

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Mallory, a federal worker, was forced to ration insulin because of a government shutdown.

Mallory Lorge worked for the Department of Interior and had just married her husband when the government shut down in 2019.

With no paycheck to cover the $300 copay for her insulin, she was forced to ration.

“When [your blood sugar level] gets that high you can go into diabetic ketoacidosis, you can go into a coma,” she told NBC News. “I can’t afford to go to the ER. I can’t afford anything. I just went to bed and hoped I’d wake up.”

Tell us your insulin story.

Have you experienced insulin price gouging? Do you know someone who has? Tell us!