A young life lost to high insulin prices

May 29, 2018 by Serena Gordon, Healthday Reporter

Nicole Smith Holt and son Alec Smith
(HealthDay)—Alec Smith was diagnosed with type 1 diabetes shortly before his 24th birthday. When he turned 26, he lost his health insurance. Less than a month later, he lost his life because he couldn't afford the exorbitant price of his life-saving insulin.

"Alec had a full-time job that didn't offer . But because he was working full-time, he didn't qualify for subsidies under the Affordable Care Act. The insurance he could get, the premium and the deductible were so high, he couldn't afford to pay for a policy. His deductible would've been $7,600," his mother, Nicole Smith-Holt, said.

When he was diagnosed with type 1 , Smith-Holt said, her son was determined not to let the disease change his life. Type 1 diabetes is an autoimmune disease that causes the body's immune system to mistakenly attack healthy -producing cells in the pancreas. Insulin is a hormone that helps transport the sugar from foods into cells for use as fuel.

People with type 1 diabetes make little to no insulin, so they must replace the lost hormone through injections or a tiny tube inserted under the skin and attached to an . But replacing that lost insulin doesn't come cheaply.

During the 2016 presidential campaign, Bernie Sanders pointed out that a vial of insulin cost about $21 in 1996. That same vial of insulin cost about $255 in 2016. The American Diabetes Association (ADA) has noted that Europeans pay about one-sixth of what Americans pay for insulin.

It was the high price that led Smith to try to ration his insulin; he simply couldn't afford to buy another vial. He didn't realize that even if someone with type 1 diabetes eats a low-carbohydrate diet (carbohydrates are turned into glucose in the body), they cannot get by without insulin.

On a Sunday night in late June 2017, Smith went to dinner with his girlfriend. He said he wasn't feeling well and complained of abdominal pain. Abdominal pain is one of the symptoms of a serious and potentially deadly complication of diabetes called diabetic ketoacidosis, according to the ADA. This condition occurs when the body doesn't have enough insulin.

The next morning Smith called in sick to work. His girlfriend tried to reach him repeatedly on Monday, but had to work. She planned to check on him Tuesday morning. She did, but it was too late.

As Smith-Holt recounted the story, she said her son never asked for help. "I wish he would've come to me," the Richfield, Minn., woman said, but added that he was very independent.

And although it's hard for her to tell the story of her son's death, she said, "I'm hoping the story gets out there. Somebody needs to make a change. This can't continue. More people will die or end up in the hospital. I want to try to save other lives."

More than 7 million Americans require insulin

Smith-Holt isn't alone in trying to draw attention to this problem. Two years ago, the American Diabetes Association asked Congress to hold hearings to determine why the cost of insulin was skyrocketing.

Congress recently did just that, and the ADA's chief scientific, medical and mission officer, Dr. William Cefalu, testified before the U.S. Senate's Special Committee on Aging.

"Insulin is a life-sustaining medication for approximately 7.4 million Americans with diabetes, including approximately 1.5 million individuals with type 1 diabetes. There is no substitute," Cefalu said.

He told senators insulin costs about $15 billion a year in the United States. Between 2002 and 2013, its average price tripled, according to Cefalu.

So, why has the price of insulin gone up so dramatically?

Unfortunately, there are no easy answers.

The ADA found there was little transparency in pricing along the insulin supply chain. It's not clear how much each intermediary (wholesalers, pharmacy benefit managers and pharmacies) in the supply chain benefits from the sale of insulin. It's also not clear how much manufacturers are paid as this information isn't publicly available either.

The ADA also noted that the current pricing and rebate system encourages high list (that's what someone without insurance or who has a high deductible is often stuck paying).

Pharmacy benefit managers (PBMs) have substantial market power and can control which insulins are approved to be on an insurer's list of approved medications (formulary). PBMs receive rebates and administrative fees, but don't have to disclose them. They can exclude insulins from a formulary if their rebate is too low, according to the diabetes association.

People with diabetes—like Alec Smith—are the ones who end up harmed by high list prices, high out-of-pocket costs and formulary restrictions.

"Insulin access and affordability are a matter of life and death," Cefalu said.

The ADA also had a number of recommendations that Cefalu passed on to Congress, including:

  • Ensuring access to affordable insulin for those without insurance.
  • Requiring greater transparency throughout the supply chain.
  • Doctors prescribing the lowest price insulin to meet treatment goals effectively.
  • Keeping rebates, discounts and fees to a minimum.
  • More closely matching list price of insulin to the net price that's paid.

Smith-Holt has some advice for parents of children with type 1 diabetes and those who have type 1 diabetes themselves.

"Speak out. Share your stories. This problem is outrageous and it's only getting worse. People need to speak up," she said.

Explore further: Patients, health care workers call for affordable insulin

More information: Learn more from the American Diabetes Association about the need for insulin affordability.

Related Stories

Patients, health care workers call for affordable insulin

May 12, 2018
Activists are rallying in Massachusetts, demanding more affordable insulin.

Insulin prices skyrocket, putting many diabetics in a bind

November 29, 2016
(HealthDay)—Insulin, a life-saving medication used to treat diabetes, was discovered nearly 100 years ago, yet the price of the drug has now spiked by 700 percent in just two decades.

Culprit in reducing effectiveness of insulin identified

April 26, 2018
Scientists at Osaka University have discovered that Stromal derived factor-1 (SDF-1) secreted from adipocytes reduces the effectiveness of insulin in adipocytes and decreased insulin-induced glucose uptake.

Type-2 diabetes: Insulin held up in traffic

February 6, 2018
In a new study, researchers from the universities of Uppsala and Lund show why insulin secretion is not working properly in patients suffering from type-2 diabetes. The report is published in the journal Cell Metabolism.

Insulin pumps associated with lower risk of serious complications among young patients with type 1 diabetes

October 10, 2017
Compared with insulin injections, insulin pump therapy among young patients with type 1 diabetes was associated with a lower risk of diabetic ketoacidosis and severe hypoglycemia, according to a study published by JAMA.

Video: Expert discusses the cause of diabetes

November 17, 2017
The numbers are staggering: 30.3 million Americans—350 million people worldwide—live with diabetes, according to the Centers for Disease Control. Nearly 1 in 4 Americans don't know they have it. U.S. health care costs ...

Recommended for you

A novel insulin accelerant

October 17, 2018
Insulin levels rise after eating a meal, signaling uptake of circulating glucose by skeletal muscle. In individuals with diabetes this process is often impaired—a condition known as insulin resistance.

Fat tissue may play a crucial role in the progression of diabetes, challenging long established notions

October 12, 2018
A new study by Australian researchers, out today, is challenging what we know about the causes of diabetes. The new research points to fat tissue as a source of disease, and widens our understanding beyond the traditional ...

Does breastfeeding hormone protect against type 2 diabetes?

October 12, 2018
(HealthDay)—The hormone prolactin—most commonly associated with breastfeeding—may play a role in reducing the risk of type 2 diabetes, a new study suggests.

Planned intermittent fasting may help reverse type 2 diabetes, suggest doctors

October 10, 2018
Planned intermittent fasting may help to reverse type 2 diabetes, suggest doctors writing in the journal BMJ Case Reports after three patients in their care, who did this, were able to cut out the need for insulin treatment ...

Markers of dairy fat consumption linked to lower risk of type two diabetes

October 10, 2018
Higher levels of biomarkers of dairy fat consumption are associated with a lower risk of developing type 2 diabetes, according to new research published today in PLOS Medicine. The study, in more than 60,000 adults, was undertaken ...

New discovery restores insulin cell function in type 2 diabetes

October 8, 2018
By blocking a protein, VDAC1, in the insulin-producing beta cells, it is possible to restore their normal function in case of type 2 diabetes. In preclinical experiments, the researchers behind a new study have also shown ...


Adjust slider to filter visible comments by rank

Display comments: newest first

not rated yet May 30, 2018
I have a hard time buying this story. First, all type 1s are reminded constantly that they MUST have insulin daily to live, so the part about "he didn't realize" just doesn't hold water.

Second, cheap humulin R can be purchased over the counter at any Walmart as well as at practically any pharmacy -- cost is only $35-50 per 100 cc vial.

Finally, financial support is available to those who can't afford even that small amount.

No diabetic ever needs to go without insulin.
5 / 5 (1) May 30, 2018
I have to agree with EdGeorge, there is more to this then the story told. I have been a type 1 for almost 43 years and last year I lost my job and insurance. But my doctor suggested, before the insurance ended, to get a 90 day supply, which I did. She also said that if I couldnt afford it they could give me samples for awhile if needed.
Another option was to travel to Canada and get the insulin much cheaper there...yes I know the travel cost..but still cheaper then in the USA.
And of course the option EdGeorge mentioned about Walmart. Is it exactly the same..no...but it will keep you alive and with some effort a Type 1 can adjust to whatever insulin they need to survive. That is the real truth...not someone dying 1 month after insurance runs out. There is more to this then reported.

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.