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The City Journals

Insulin-dependent community lights Capitol Hill with a message: We are not for profit

Sep 26, 2019 11:30AM ● By Amy Green

Vigil at Capitol Hill honors recent insulin rationing deaths. (Photo courtesy/Ashlee Taylor)

By Amy Green | [email protected]

Frederick G. Banting invented insulin in the 1920s. It was one of the biggest medical discoveries of the 20th century. Banting and his co-inventors became famous for selling the insulin patent for just $1. They believed it should always be a worry-free right for patients and easily accessible. Yet today, American diabetics often have to cough up hundreds of dollars per month for the life-saving medicine, a price that many can't afford.  

Capitol Hill transformed into an austere cemetery for one night, as a group of concerned Utahns gathered to raise awareness of the issue. Tea light bearers came to represent the community of Type 1 diabetics, who believe people’s disease or disability should not be for profit. They met for an evening vigil, Sept. 7 at the Capitol grounds to honor diabetics who’ve died from not being able to afford insulin.

Type 1 diabetes is an autoimmune disease that can affect all ages — babies, kids, teens and adults. It’s different than Type 2 and cannot be reversed with diet and exercise. Type 1 requires prescription insulin that has no homeopathic or good cheap substitute. 

The cost of insulin has exploded in recent years. According to a report issued by the House of Representatives, the price doubled between 2012 and 2016 and currently averages $350 per vial in the U.S. This lasts some diabetics only one week. In Canada, it’s only $30 for the same drug. While insulin is the main prescription diabetics require, there is also additional cost-inflated prescriptions needed to maintain a decent quality of life. Many Type 1 diabetics across the U.S. feel forced to ration medication. And many have died.

The vigil was organized by Mindie Hooley, T1International chapter leader for the state of Utah. Hooley explained the reason for a vigil on Capitol Hill saying, “I’m honoring the lives taken away by pharmaceutical greed. It could have been my son who died. He rationed his insulin, because the cost is $800 per month, which we struggle to afford. My son lived, but others haven’t.”

Tombstone representations of people who died from insulin rationing lined the sidewalk. From 300 North winding up around Capitol Boulevard, the headstone plaques bore the names of over a dozen recent deaths. Utah locals came from many directions — Brigham City, Magna and Sandy. The hope is that Utah can recognize a crisis and make protective changes.

Other U.S. states have already enacted legislation known as Kevin’s Law to safeguard against insulin rationing death. Kevin’s Law allows pharmacists to dispense emergency insulin to a patient without needing a current prescription. The goal of T1International is to help Utah adopt Kevin’s Law or a related piece of protective legislation.

Earlier this year, the state of Colorado passed a law that caps the copays for insulin at $100 a month.

Vigil goers mingled to talk of personal experiences.

“I’m a Type 1 diabetic who struggles to afford my insulin. I want to get the prices down for everybody, not just me. I’ve been diabetic for 19 years now,” Courtney Darnell said.  

When asked if she has had to ration insulin she said, “In one way or another, yes.” Darnell went on to clarify what happens without the right amount and correct type of insulin. 

“Within hours I can go into diabetic ketoacidosis (DKA) and need to be hospitalized. It’s critical and dangerous if you ration insulin in the slightest.” Darnell explained why she doesn't buy discounted insulin offered at Walmart. “For me personally, the only insulin that will work is Humalog. The other types don’t work for me. Some insurance companies won't pay for the specific insulin I need.”

Wendy Switzer commented on how some people think diabetes is not very hard to deal with — just watch what you eat and take a shot every once in a while. “Diabetes is a disease that does not have a rule book. It can be one way one day, and be completely different the next. You can do the same thing day after day and yet your blood sugars will fluctuate. The disease does not follow the rules.” She believes diabetics need enough insulin to plan for the hardest days.  

Myranda Holgerson spoke about current insulin manufacturer, Novo Nordisk, recently announcing that it will offer a version of insulin at a reduced price. She explained how even at the reduced price, it’s not enough of a help. “My daughter uses four vials month, so that’s still going to be $600 a month out of my pocket. That’s on top of her other supplies and any other emergencies with being sick,” Holgerson said.

T1International asks people to report ethical violations of price gouging at the T1International website when facing exorbitant cost increases of insulin. 

Note: A diabetic who feels the need to ration should contact a medical clinic to verbalize concerns. Walmart sells a more primitive, less expensive over-the-counter version where a pharmacist can assist. Consult with a doctor about dosing less optimal or cheaper brands.