SHELTON — A Shelton resident’s fight for lower cost insulin and diabetic testing supplies brought her to the State of the Union.

Kristen Whitney Daniels, head of the T1International’s Connecticut #insulin4all chapter, made the trek to Washington, D.C., on Feb. 4 as a guest of U.S. Rep. Rosa DeLauro, calling the experience an “amazing honor.”

“This provided me the opportunity to discuss this issue with other legislators,” said Daniels, who also attended Speaker of House Nancy Pelosi’s reception after the State of the Union. “For so many of us, insulin is as necessary as oxygen. Three companies continue to price gouge despite people dying every year. We need reform. This goes beyond politics.”

Daniels was diagnosed with Type 1 Diabetes when she was 15. She said she enjoyed incredible benefits while under her parents’ insurance plan, leaving her naïve to what those without similar coverage faced.

She said she learned that hard lesson when she turned 26 and aged off her parents’ plan.

“I’ve experienced everything from no health insurance to full coverage, which has left me struggling to afford the one medication that keeps me alive,” said Daniels, adding that she was forced to often ration her insulin.

Daniels said it finally reached the point where she literally had only one drop of insulin and was unable to obtain more from CVS without paying $2,400 for a month’s supply. Her calls to insurance companies and distributors were met with sympathy but no help.

“I said I will die without this,” said Daniels. “I was fortunate, in a last-ditch attempt, I found insulin at a community health center for just $14. Since that point, I have been intent on making sure this does not happen to me or anyone in the same situation ever again.”

Since the 1990s, the cost of insulin has increased more than 1,200 percent, yet the cost of production for a vial of analog insulin is between $3.69 and $6.16. Spending by patients with type 1 diabetes on insulin nearly doubled from 2012 to 2016, increasing from $2,900 to $5,700 annually. A Yale University study found that one of every four patients with type 1 diabetes has had to ration their insulin because of cost.

Her own experience and the numbers scared Daniels, who turned her efforts for advocating for lower insulin costs. She helped form the T1International Connecticut chapter last year with the belief that “socioeconomic status should never be a barrier to health care or medication.”

The Connecticut chapter, #insulin4all, is a group of volunteer advocates working to raise awareness about the insulin price crisis and push for transparency and lower insulin prices. Daniels said the group promotes awareness of the pricing practices of insulin manufacturers and the financial burden it creates for people with diabetes.

Daniels said the group, one of 34 across the country, empower individuals affected by the high price of insulin to share their stories and fight for change toward making the life-saving drug affordable.

I am here to bear witness to our broken healthcare system and to demand better for our country,” wrote Daniels in a Facebook post the night President Donald Trump presented his State of the Union address.

Daniels said she first met DeLauro at a press conference on insulin affordability last year and was “proud to stand with her tonight as she supports our call for high quality healthcare and #insulin4all.”

“I chose Kristen as my guest for the State of the Union because the ever-rising cost of healthcare is a central issue for people throughout the Third District,” said DeLauro. “Kristen is a type 1 diabetic, and as insulin prices have skyrocketed, she has been forced to ration her insulin — unsure of how she could afford the medicine that kept her alive.

“That is heartbreaking, and it is unacceptable,” added DeLauro.

DeLauro said attempts to eliminate the Affordable Care Act only hurt people like Daniels.

“Our elected leaders deserve to be judged by what they are doing to help working people like Kristen.” said DeLauro. “From that perspective, President Trump’s time in office has been a failure.”

For more information, vist the T1International Connecticut chapter’s website.

brian.gioiele@hearstmediact.com