A Nevada coalition is attempting to force pharmaceutical companies to disclose how they set insulin prices. Video from May 1, 2017. Wochit
After her son died last year, Iowan Janelle Lutgen found in his home only empty vials of insulin that had been given to him from the belongings of a deceased diabetic
The pain of Jesse Lutgenâ€™s death is still raw in his motherâ€™s voice.Â
Janelle Lutgen was among the many Iowans who contacted the Des Moines Register after we published an editorial about the outrageous cost of insulin. The Dubuque-area family paid the highest price of all when Jesse died at the age of 32 on Feb. 7, 2018.Â
The Type 1 diabetic had no insulin in his possession.
His story, as well as the stories of soÂ many others who need insulin to simply stay alive each day, should be a wake-up call to Congress. Bringing down the price of prescription hormones should be aÂ top priority forÂ Sens. Joni Ernst and Chuck Grassley.Â
Their constituents will continue to die if they fail to finally take meaningful action, which could include imposing price controls on insulin, limiting profits of drug manufacturers or funding the development of less expensive formulas.Â
While Type 1 diabetics pay an average of nearly $6,000 annually for insulin,Â a September 2018 study published in BMJ Global Health calculates that a yearâ€™s supply of insulin priced at as little as $200 would cover production costs and still deliver a profit to the manufacturer.
Jesse was diagnosed with Type 1 diabetes at the age of 12. Janelle was a mail carrier, and her health insurance paid most of the cost of his insulin, syringes, test strips and doctorâ€™s appointments â€”Â the basics needed to survive daily with this disease.Â
How did he fare as he grew older?
â€śHe wasnâ€™t one for crying,â€ť said Janelle, her voice breaking. â€śHe wasnâ€™t one to complain. He took what came at him and tried to make the best of it.â€ťÂ
And like many other diabetics, plenty came at him.
He underwent eye surgeries at the University of Iowa Hospitals and Clinics for diabetic retinopathy.Â
After problems with muscles in a leg, he was given a brace to wear. The bottom of the brace put pressure on his foot, which ultimately led to an infection and the amputation of five toes. Diabetics may have poor circulation and not feel pain, pressure or wounds on their feet.Â
Jesse worked at a distribution center in Dubuque, but lost his job and health insurance three months before he was found dead in his home.
â€śBeing a diabetic, you fill your prescriptions regularly,â€ť Janelle said. â€śSo maybe he had enough insulin to last him a few months. Then he started rationing. There was no insulin in his houseâ€ť when he died.Â The last vials he received were given to him by a family friend who got them from the belongings of a diabetic who had recently died, she said.
When insulin costs as much as $300 a vial and diabetics use two to four vials a month, a bottle from a deceased person is valuable. (Readers informed us Walmart sells a few older, cheaper insulins, but a Des Moines endocrinologist cautioned that those can result in dangerously low blood sugars for Type 1 diabetics.)
Rationing the medication and using too little leadsÂ to high blood sugars and complications, including blindness, heart disease and kidney failure. Having no insulin quickly leads to death.
â€śIf Jesse could have afforded insulin, he would be alive,â€ť she said.
As Jackson County Republican Party chair, Janelle knows her representatives in the Iowa Legislature. She said sheâ€™s talked to Ernst about her son and the cost of insulin. Though she doesnâ€™t support universal health insurance, she does want Congress to act to lower the price of insulin.Â
She wishes sheâ€™d known earlier that some people go to Mexico or Canada to buy insulin for much less than they pay in the United States. She hopes Congress will change the law to allow such importation to be legal.
Of course, Americans should not need to travel to other countries to purchase a basic prescription hormone, including forms that have been sold for decades.Â
â€śConsidering insulin has been around for almost 100 years, and that the ‘discoverers’ sold their patent for $1 each to make this more available to save lives, it sickens me to see the exorbitant price of this vital hormone today,â€ť said Dr. Teck Khoo, a Des Moines endocrinologist.
It should sicken members of Congress, too. If they cared more about average Americans than profit-seeking drug companies, they would put an end to this needless suffering.Â
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