Janel Wright had just days left in her insulin supply in early January when a pharmacist told her there was none of the drug left to fill her prescription.

Her neighborhood Fred Meyer pharmacy in Anchorage, Alaska, hadn’t called in weeks to offer an automatic refill, and Wright’s supply of NovoLog insulin had dwindled to nearly nothing. The 62-year-old administrative law judge has Type 1 diabetes and needs the medication to live.

The pharmacist told Wright the pharmacy had tried unsuccessfully to get a wholesaler to ship them new insulin, so she had two remaining options. She could drive to a town 90 minutes away where another Fred Meyer had two vials in stock or call other pharmacies to see what she could drum up.

“I’m desperate. I need my insulin, and I need it within two days,” Wright, recalled thinking. She was almost out. That January encounter was the first time she’d come so dangerously close to running out of the medication she had used since she was a child.

“I started crying – and it takes a lot to make me cry,” she said.

Over the past year, many patients like Wright, who depend on insulin have encountered shortages, delays and red tape from drug companies and pharmacies.

About 2 million Americans with Type 1 diabetes must take the medication to regulate their blood sugar because their bodies do not produce insulin. Millions more with Type 2 diabetes also take insulin as their disease advances. About 38 million Americans have diabetes, the majority Type 2.

Wright and other advocates for diabetes patients who need insulin to survive worry the nation’s supply has become unreliable. Certain brands of insulin have been in shortage multiple times since late 2023. The shortages caught the attention of patient advocates and members of Congress who have demanded answers from the nation’s three dominant insulin makers.

Lucrative weight loss drugs are new focus for diabetes patients

The insulin supply shortages come as diabetes patients increasingly turn to drugs such as Ozempic and Mounjaro, part of a new category of weight loss medication called glucagon-like peptide 1, or GLP-1 drugs, which are approved to treat Type 2 diabetes. Drug companies have invested hundreds of millions of dollars in factory production to keep pace with the voracious demand from American consumers who want these drugs for diabetes, weight loss and other conditions.

But Wright and other patients reliant on insulin fear drug companies’ attention to the profitable blockbuster meds comes at the expense of a life-sustaining drug that’s been around for more than a century. People who must take insulin to live said shortages of the medication have forced them to make extreme decisions.

When Wright’s mealtime insulin was down to a partial vial in January, she ate fewer carbohydrates to ration the amount of medication she dispensed via a pump. The insulin pump calibrates the amount of insulin she needs based on the carbohydrates she eats. She felt miserable on the low-carb diet she had to switch to and it left a “dull, nasty headache” for weeks. She secured a refill from a different pharmacy by the end of the month so she could return to taking the dosage of insulin her doctor recommended.

But she hasn’t forgotten how close she came to running out.

She had previously endured breast cancer treatment, but her fear in January when she thought she would run out of insulin was unmatched.

“I thought: No insulin? Death is imminent,” Wright said.

Three drug companies dominate the U.S. insulin market: Novo Nordisk, Eli Lilly and Sanofi. Last spring, Eli Lilly reported its drugs Humalog and insulin lispro were in short supply. Novo Nordisk, the manufacturer of NovoLog, also reported periodic shortages this year. The company said it would discontinue the insulin Levemir due to global manufacturing constraints and pharmacy benefit manager maneuvering that blocked access for many patients.

Congress demands answers from insulin manufacturers

Last month, U.S. Reps. Diana DeGette, D-Colo., and Gus Bilirakis, R-Fla., asked the three major insulin makers what steps they were taking to shore up the supply of the lifesaving medication.

In Sept. 23 letters to CEOs of the three pharmaceutical giants, the lawmakers said insulin was a “critical public health need” and they reminded them that patients with Type 1 diabetes need short-acting insulin.

“We are concerned that continued supply disruptions could severely impact access to care for patients with diabetes and remain steadfast in our commitment to ensure there are alternatives available that will not present challenges to their daily living,” DeGette and Bilirakis, co-chairs of the congressional diabetes caucus, wrote in similar letters to the three companies’ top executives

The lawmakers asked the CEOs for detailed answers to questions about their insulin supply. They asked the executives to explain what steps they’d taken to maintain a reliable supply, explain their disruptions, characterize the level of demand and address how they prioritized insulin manufacturing among their products.

Insulin maker promises ‘commitment’ to deliver drug

In responses to questions from lawmakers and USA TODAY, officials at the companies said they remained committed to making insulin.

An Eli Lilly official said decades of insulin research and manufacturing had led to new drugs for diabetes patients, such as Mounjaro. However, Shawn O’Neail, a senior vice president at Eli Lilly, said in a letter to lawmakers that these advancements “will never change our core commitment to delivering the medicine people with diabetes need.”

“Right now,” he noted, “that continues to be insulin.”

A Novo Nordisk official said the company makes more than a dozen insulin products and more than 800 million insulin pens a year. “Not only are we not winding down our work for people living with diabetes − Novo Nordisk is ramping up,” Jennifer Duck, the company’s vice president of public affairs, told lawmakers in her response letter.

In recent years, these companies have been questioned over the price of insulin in congressional hearings and investigations. In response to public pressure and changing market dynamics, the trio of major manufacturers slashed insulin prices by 70% or more last year.

While diabetes patients applauded the price cuts, a more pressing need surfaced. Advocates worried diabetes patients might not always be able to get the medication they need to survive.

George Huntley, the CEO of the Diabetes Leadership Council and the Diabetes Patient Advocacy Coalition, said the diabetes community worries about the insulin supply after periodic supply chain disruptions in the past year.

“It’s hard enough to live with diabetes,” said Huntley, who has had Type 1 diabetes for more than four decades. “Then to worry about, ‘Where can I get the drug that I need in order to basically survive?’ It’s really, really disconcerting.”

What causes disruptions to the insulin supply?

Earlier this year, Eli Lilly reported temporary shortages of Humalog and insulin lispro in 10-milliliter vials. The company said new regulations had led to a brief delay in manufacturing, and supply shortages involving other manufacturers meant that more people were seeking Lilly’s insulin vials.

The company discontinued its 3-milliliter vials of Humalog, which is mainly used by hospitals, to free up capacity for the 10-milliliter vials, according to the company’s response letter to lawmakers.

Novo Nordisk indicated that only one type of its insulin is in shortage. Manufacturing delays will cause Novo’s Fiasp vials to be in short supply through October, a Novo spokesperson said. Patients should check with their pharmacies about the availability of insulin and contact other pharmacies if necessary to find more vials, the spokesperson said.

A Sanofi official told lawmakers the company hasn’t had insulin shortages in the past two years. What’s more, the company announced plans to spend more than $1 billion on a state-of-the-art insulin factory in Germany by 2029.

Weight loss drugs are among the most prescribed treatments for diabetes

The sporadic shortages come as the companies race to meet the soaring demand for GLP-1 diabetes and weight loss drugs that tested their manufacturing capacity.

Drugs such as Novo Nordisk’s Ozempic and Eli Lilly’s Mounjaro are approved to treat diabetes patients and have proven more lucrative for manufacturers than insulin products.

Over the past five years, GLP-1s have surpassed insulin as the second most commonly prescribed medicine to manage Type 2 diabetes, according to commercial health insurance claims analyzed by Trilliant Health, a health care analytics company. Only Metformin, another diabetes drug, was prescribed more frequently in 2023.

Hal Andrews, CEO at Trilliant Health, said as new drugs soared in popularity, drug companies have faced political pressure to cap the price of insulin at $35 per dose. Meanwhile, GLP-1 drugs command much higher prices and also appeal to nondiabetic patients who want to lose weight. Even as some health insurers balk at covering the drugs for weight loss, the blockbuster category has been lucrative for drug companies.

“The math of insulin versus GLP-1 is pretty clear to a rational economic actor,” Andrews said. “If you’re a rational economic actor, and I can make one thing and sell it for $1,000 and another thing and sell that for $35, that math is pretty self-evident.”

People with Type 2 diabetes can often delay insulin by using other medications, including weight loss medications, such as GLP-1s, said Brent Smith, a family physician in the Mississippi Delta, which has some of the highest diabetes rates in the nation.

The shift to GLP-1s has “drastically flipped our prescribing” for diabetes patients, Smith said.

He said the weekly injections and easy-to-use injection pens have made weight-loss drugs more appealing to patients. The drugs also can lead to dramatic weight loss, which can delay the need for insulin for people with Type 2 diabetes.

“They’re very effective, especially if started early,” when a person has prediabetes, said Smith, who is a board member at the American Academy of Family Physicians.

Patients who take insulin can also benefit from the weight loss triggered by drugs such as Ozempic and Mounjaro. Providers can lower these patients’ insulin dosage as they lose weight, Smith said.

Still, Smith said, many patients cannot afford these drugs due to their high prices. Novo Nordisk charges U.S. residents $969 a month for Ozempic, far more than what the drug costs in Canada or Europe, according to documents presented last month during a Senate Health, Education, Labor and Pensions committee hearing.

Smith said diabetes patients – especially those with Type 1 – still need insulin.

“It seems rather cruel that you would have all these advances in insulin types and effectiveness and now you have shortages because we just don’t deem it important enough to manufacture,” Smith said.

Novo CEO: Market for insulin is declining

A Novo Nordisk executive said the company remains committed to manufacturing insulin at the same time it is continuing to invest heavily in potential diabetes treatments.

During a Senate committee hearing last month, Lars Fruergaard Jørgensen, CEO of Novo Nordisk, said the pharmaceutical company has long been committed to making insulin – and will continue to do so. However, he noted, the market is changing.

“The world market for insulin is actually declining, so there’s less demand,” said Jørgensen.

He said he feared new drug companies would be reluctant to make insulin over the long term because prices for the medication have dropped significantly. When Novo Nordisk slashed the prices of its insulin products, pharmacy benefit managers blocked access to some consumers by excluding some forms of insulin from the lists of drugs consumers can access under their insurance plans.

Still, Jørgensen said, his company would continue to supply insulin and spend money researching and developing products to help diabetes patients. Novo Nordisk plans to spend $30 billion on factories to make all its medications, including insulin, the company told lawmakers.

“We will keep producing insulin,” Jørgensen said. “We’re committed to patients in need of insulin.”

Ken Alltucker is on X at @kalltucker, contact him by email at alltuck@usatoday.com.

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