Alec Smith was diagnosed with type 1 diabetes just 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.
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“Alec had a full-time job that didn’t offer health insurance, but because he worked full-time, he wasn’t eligible for benefits under the Affordable Care Act. The insurance he could get, he had a premium and deductible like that. high, that he could not afford to pay a policy: his deductible would have been $ 7,600, ”said his mother, Nicole Smith-Holt.
When he was diagnosed with type 1 diabetes, Smith-Holt said his 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 insulin-producing cells in the pancreas. Insulin is a hormone that helps transport sugar from foods into cells for use as a “fuel”.People with type 1 diabetes make little or no insulin, so they need to replace the lost hormone with injections or a tube inserted under the skin and connected to an insulin pump. But replacing that lost insulin isn’t cheap – in the US.
During the 2016 presidential campaign, Bernie Sanders pointed out that an insulin vial cost about $ 21 in 1996. That same insulin vial cost about $ 255 in 2016. The American Diabetes Association (ADA) noted that Europeans pay for it. a sixth of what it costs the American diabetic.
It was the high price that prompted 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-carb diet (carbohydrates are turned into glucose in the body), he couldn’t get by without insulin.
One Sunday evening in late June 2017, Smith went to dinner with his girlfriend. He said she was feeling unwell and complained of abdominal pain. Abdominal pain is one of the symptoms of a serious and potentially life-threatening complication of diabetes called diabetic ketoacidosis, according to the ADA. This condition occurs when the body does not have enough insulin.
The next morning Smith called work to report that he was ill. His girlfriend tried to reach him several times on Monday, but she had to work. She had planned to check him out on Tuesday morning. She did, but it was too late.
As Smith-Holt told the story, she said her son never asked for help. “I wish he had come to me,” the woman from Richfield, Minnesota said, but she added that she was very independent.
And while it’s hard for her to tell the story of her son’s death, she says, “I hope the story gets out there, someone has to change all of that: it 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 need insulin
Smith-Holt is not 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 ADA’s head of science, medical, and mission, Dr. William Cefalu, testified before the United States Senate Special Committee on Social Affairs.
“Insulin is a life-sustaining drug for approximately 7.4 million Americans with diabetes, including approximately 1.5 million individuals with type 1 diabetes. There is no alternative,” Cefalu said.
He told senators that insulin costs about $ 15 billion a year in the United States. Between 2002 and 2013, the 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 little price transparency along the insulin supply chain. It is not clear how much every middleman (wholesalers, pharmacists, and pharmacies) in the supply chain benefits from selling insulin. It is also unclear how many producers are paid as such information is not publicly available.
The ADA also noted that the current pricing and discount system encourages high list costs (whereby some who are uninsured or who have a high deductible are often unable to pay).
Pharmacy benefit managers (PBMs) have significant market power and can control which insulins are approved on an insurer’s endorsement list (handbook). PBMs receive reimbursements and administrative expenses but do not have to disclose them. They can exclude insulins from a form if their discount is too low, according to the Diabetes Association.
People with diabetes, like Alec Smith, are the ones who end up hurt by the high list prices, high costs, and limitations of formulas.
“Access to insulin is a matter of life and death,” Cefalu said.
The ADA also had a number of recommendations that Cefalu passed on to Congress, including:
- Ensure access to affordable insulin for those without insurance.
- It calls for greater transparency throughout the supply chain.
- Doctors who prescribe the lowest price of insulin to effectively achieve treatment goals.
- Keep rebates, discounts, and commissions to a minimum.
- A fee that closely matches the insulin list price at the net price that is paid.
Smith-Holt has some advice for parents of children with type 1 diabetes and those who have type 1 diabetes.
“Talk, share your stories, this problem is outrageous and it’s only getting worse, people need to talk,” he said.