KANSAS CITY, MO (KCTV) -- The price of insulin has skyrocketed, and what some diabetics do to get the medicine they need is simply heartbreaking and awful.
“This is not something that’s negotiable. It’s not something I’m using for fun. It’s not something I can choose whether or not to use, I have to use it. It is imperative to my life. If I don’t have it, I die. I don’t,"
Hattie Saltzman is 22 years old. She was diagnosed with Type 1 diabetes while she was in high school. She is vocal about how she survived last year when her copay jumped to $550.
“I know some people who have worse insurance coverage than I did. They might be spending $900,” Saltzman said. “We have to pay it or we die.”
Saltzman began siphoning insulin off her father’s supply with his blessing. When asked if she was bending the rules, she clarifies.
“I broke the law,” she said. “I hope no one comes knocking on my door.”
How Hattie Saltzman survived
Saltzman’s story is a bit more complicated than simply swiping insulin. She says her doctor helped her too by sliding her dozens of shots she would crack open and insert in her pump. Technically, her doctor was bending the rules a bit too.
“You do what you have to do,” Saltzman said.
Saltzman also rationed her insulin.
“I was skipping doses. Just enough to where I knew I would be alive, but not be living the best life I could be,” she said.
And then everything crashed. It turns out the rationed insulin in her pump expired and her blood sugar hit 650. That’s more than six times the normal level.
“I could not breathe and your heart is racing. I had a headache. I had to go to the ER. It was one of the worst days of my life. I hope I never go through that again,” said Saltzman.
Help for Saltzman can through heartbreak. A member of her church passed away. The young woman died from complications due to cystic fibrosis, and the Mills family donated Hanna’s left-over insulin to Saltzman knowing her struggles.
“So, I got five bottles of insulin, which would last me more than through the end of the year. I cannot describe how it feels to pick up an insulin vial that has somebody else’s name on it when you know that person is no longer around,” said Saltzman.
New year, new plan
2018 is a whole new year. Saltzman has a new insurance plan and pays just $25 a month for insulin. And the new plan doesn’t end there.
“Anything extra that I don’t need is going to other diabetics,” Saltzman said.
Saltzman has a specific person in mind: 12-year-old named Avery Peterson, another member of her church.
Avery’s copay is around $600 a month.
“I’m going to be donating it. I will be donating it the rest of the year now that I know she’s in trouble,” said Saltzman.
Saltzman is proud of how the diabetic community helps each other, but she points out generosity won’t solve the problem.
“There are Facebook pages, there are GoFundMe’s, everybody is doing what they can to try and help this community but it’s not sustainable, it’s not enough. There’s no way that we can collect enough insulin to save everybody that can’t afford it. This is just how it is and it needs to be changed,” said Saltzman.
Why is insulin so expensive?
Many diabetics question the high price of insulin. They point a critical finger at the manufacturers.
Insulin has been around for almost 100 years. There are three manufacturers. Diabetics and their families question the profit margin and liken the case to EpiPens.
Saltzman plans to protest outside Elli Lilly headquarters along with other diabetics.
KCTV5 reached out to Elli Lilly who provided this statement:The out-of-pocket costs that people pay for insulin have gone up for several reasons including insurance designs – such as high deductible plans that require people to pay thousands of dollars before coverage is triggered. We opened the Lilly Diabetes Solution Center to help people who pay the highest prices find customized solutions. The solution center is staffed with health care professionals, such as nurses and pharmacists, who will help people find the best solutions based upon their personal circumstances.The helpline points people toward a suite of solutions that can significantly lower and cap high monthly out-of-pocket costs for some people who use Lilly insulins. This includes point-of-sale savings at the pharmacy, information about free clinics that provide donated Lilly insulin, and ways to access insulin when there is an immediate need.
Saltzman says solution centers and all those coupons didn’t apply to her because she had insurance.
That was also the case with Alec Smith from Minnesota. He had insurance but the deductible was $7,600. His monthly rate for insulin was $1,300. He tried to ration his insulin and stretch his supply. He was found dead in his apartment three days before his next paycheck. His mother is now an activist fighting for reasonably priced insulin.
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