At their first hearings of the 116th Congress, the Senate Finance and House Oversight and Reform Committees heard the heart-wrenching stories of two mothers whose diabetic children have suffered as a result of rising drug prices.

Here are their stories:

Kathy Sego, describing her son’s choice to ration his insulin after discovering the cost of his treatment:

[52:16-58:06]

“I’m heartbroken to know that my son felt he was a financial burden to us.  Money over life is not the choice we want him to make.”

“In everything my family does we think first of the cost of [my son’s] insulin.  We don’t eat out, I don’t run on the heat in our home.  I play a risky game with my utility bills, strategizing how long I can go before paying the past due fees.  … Our electricity was turned off because I needed to purchase the medicine that keeps my son alive. … Almost every dollar I make goes towards health expenses.”

“It comes down to this: [my son] needs insulin to live, but should that need for insulin keep him from living?”

Antroinette Worsham, describing her fear of losing her younger daughter after the death of her older daughter as a result of the high price of insulin:

[3:02:26-3:06:40]

“My oldest daughter Antavia was diagnosed at the age of 16 and only lived 6 years due to the high cost of insulin. … My youngest daughter, Antanique, was diagnosed when she was 12.  She is now 18 years old, she attends the University of Toledo and she’s studying law right now while battling type 1 diabetes.  I fear the same thing is going to happen to her in two years.  How do pharmaceuticals think college students are supposed to afford high drug costs?”

“High drug prices are forcing patients to be non-compliant. … Many Americans are forced to buy their insulin out of the country or from the black market.”

“I’m a mother of two type 1 diabetics who are affected by the rising cost of insulin.  I’m crying out and asking Congress to review pharmaceutical drug price gouging.  Antanique is a very smart young lady who is trying to be successful and feels it is hard dealing with chronic illness, on top of worrying if she can afford insulin as she ages into adulthood.”

As Kathy Sego added at the end of her testimony:

“The three scientists who discovered insulin sold the patent for one dollar each to ensure affordable insulin for all who needed it.  Nearly one hundred years later it is my most desperate wish that we make that vision come true.”

Unfortunately, Kathy and Antroinette’s stories are not unique. As the price of insulin continues to rise exorbitantly, millions of Americans who depend on this drug are fighting for their lives.  Between 1996 and 2006, the price of insulin increased by 700 percent.  CSRxP is encouraged that lawmakers on both sides of the aisle are taking steps to hold insulin makers– and many other drug makers – accountable for price gouging patients.

To read CSRxP’s statement on the House and Senate’s first drug pricing hearings of the 116th Congress, click HERE.

To read more about how insulin makers Eli Lilly, Novo Nordisk and Sanofi have been price gouging patients, click HERE.