WASHINGTON — The health condition is a blood sugar disorder known as diabetes, which affects an estimated 34 million Americans. In Hawaii, about 11% of the population is diabetic, slightly above the national average, and many more are deemed prediabetic.

Some groups are particularly affected, with about 14.2% of Native Hawaiians, 17.7% of Pacific Islanders and 22.1% of Samoans diagnosed with diabetes.

Insulin has become a textbook example of the crisis in prescription drug pricing in America. The drug, used to treat more severe cases of diabetes, was invented almost 100 years ago and has long been out of patent. But the price of insulin — administered in various forms — has skyrocketed as the three firms that now control about 95% of the insulin market systematically boosted prices at least tenfold during the past two decades, far outpacing inflation, according to a new congressional report on drug pricing.

The high cost of insulin is forcing families in Hawaii and elsewhere to make difficult decisions about what to cut from their budgets to pay for the drugs they need. A vial of an injectible drug called Humalog, which cost $21 in 1999, rose to $332 in 2019, according to the Mayo Clinic.

“There’s no reason for insulin to be this expensive,” said Mariana Gerschenson, director of Hawaii’s Diabetes Research Center at the John A. Burns School of Medicine at the University of Hawaii.

Shelsea Deng, Mother of a Type 1 diabetic, 7yr old Coral, diagnosed on 3/11/16.
Shelsea Deng, the mother of a Type 1 diabetic, 7-year-old Coral, right, said her family left Hawaii due to the high price of insulin. Courtesy: Shelsea Deng/2021

Most people in Hawaii have insurance which pays some of the monthly cost but many others lack this protection. There have been reports of diabetics paying up to $1,000 a month for the drug.

Insulin prices combined with the high cost of living in Hawaii proved too steep a burden for Shelsea Deng, whose 7-year-old daughter Coral has been diagnosed with Type 1 diabetes, which means she is dependent on insulin injections. Deng recently moved her family from Honolulu to Southern California to protect her daughter’s health.

“We left Oahu,” said Deng, whose family is part Hawaiian. “We couldn’t afford to live there because of the cost of insulin.”

The financial burden added to the daily fear Deng said she faces as she constantly monitors her daughter’s blood glucose for signs of dangerous fluctuations that could threaten her life.

The expense is already having fatal consequences. The number of diabetics who died in 2020 jumped almost 15% from the year before, according to a new report on mortality rates released by the National Center for Health Statistics earlier this month. Media attention to the new report focused on covid deaths but the new report indicated that diabetes deaths in the United States had climbed to more than 100,000 people in 2020.

A recent survey by T1International, an advocacy organization that promotes improved access to insulin, found that about one in four Americans with diabetes said they had had to ration or cut back on their insulin use in the past year because it had become too expensive. About 63% said their insulin supply was disrupted during the covid emergency, the group reported.

One of the most famous cases of diabetes-related fatalities involved Alec Smith, a 27-year-old Minnesota man who lost his insurance coverage from his parents when he turned 26. Unable to afford the high premiums at his job, he tried to pay for his insulin with cash, rationing the amount to make his money stretch further. In June 2017, he was found dead in his apartment of diabetic ketoacidosis, according to a report from the Mayo Clinic.

President Joe Biden has said the high price of insulin creates situations for families that are “wrong.” Courtesy: Gage Skidmore/2020

A proposal that could have eased costs for America’s diabetics and their families hit a roadblock last week, when Democratic Sen. Joe Manchin of West Virginia announced he could not accept the expense and inflation risk posed by the sweeping legislative package proposed by President Joe Biden known as the Build Back Better Act. Among the proposals was a plan to limit the monthly cost of insulin to $35 for patients with insurance and Medicare, amid an effort to give the federal government more power to negotiate with drug companies over prices.

At a news conference last week President Biden acknowledged the blow by Manchin and voiced particularly strong and emotional support for insulin price relief. Insulin once cost between 10 cents and $10 a dose, he said, but now costs up to $1,000 a month. For parents of a child with Type 1 early-onset diabetes, the expense might be too much, he said heatedly.

“What do you do if you’re a mom and a dad working with minimum wage, busting your neck, and you look at your kid and you know if you … if you don’t get that drug for them … what happens? They’re likely to go into a coma and maybe die,” he told reporters. “Not only do you put the kid’s life at stake, you strip away all the dignity of a parent looking at their child. I’m not joking about this. Imagine being a parent, looking at a child, and you can’t afford — you have no house to borrow against, you have no savings. It’s wrong.”

It is possible that Senate Democrats and the White House will find a way forward in resolving some of their differences in coming months. Manchin has repeatedly said that one part of the BBB he supports is reducing the cost of prescription drugs, which would include insulin.

Democrats and patient advocates were disappointed at the failure to reach an agreement on the broader bill, including the insulin provision.

“The cost of prescription drugs — including insulin — is out of control,” Sen. Brian Schatz, a left-leaning Democrat, said in a statement. “That’s why it is critically important that we pass the Build Back Better Act, which will lower prices on medications and cap the cost of insulin at $35 a month for most people, including those on Medicare. This life-saving drug shouldn’t be out of reach for those who need it.”

Shelsea Deng, Mother of a Type 1 diabetic, 7yr old Coral, diagnosed on 3/11/16.
Shelsea Deng’s daughter Coral was diagnosed a Type 1 diabetic on March 11, 2016. Courtesy: Shelsea Deng/2021

In a statement, centrist Democrat Rep. Ed Case said he also supported the Build Back Better Act, particularly because it would have allowed Medicare to directly negotiate prices on prescription drugs.

Case has also co-sponsored a raft of other legislation designed to make it easier and cheaper for diabetics to get insulin, including House Resolution 3, which would have provided better insurance coverage for drugs, including insulin, and House Resolution 2178, which focuses on funding for diabetes care.

The high cost of insulin has been a troubling topic for years.

According to the congressional report, the three companies — Indiana-based Lilly Corp.; Sanofi, a French firm; and Novo Nordisk, based in Denmark — have “raised prices in lockstep” over the years. A vial of a drug called Lantus cost $35 in 2001 and $284 in 2019, for example, and NovoLog, made by Novo Nordisk, climbed from $40 in 2001 to $289 in 2021, the report said.

According to the report, which included an extensive review of internal company documents, the companies have been able to hike prices by finding ways to “manipulate the patent system,” by delaying or blocking competitor entry into the market, and in exploiting weaknesses in the regulatory regime at the U.S. Food and Drug Administration.

In a statement, a spokesperson said that Lilly  Corp. does not “collaborate” with other companies and makes its own independent pricing decisions. The company offers a variety of ways for patients to obtain insulin at lower costs, according to the statement. The company said that regulatory barriers that prevent generics from entering the market need to be removed and that “systemic solutions and new public policies” are needed to increase pricing transparency and provide what the firm called “much needed relief” to patients who have difficulty paying for their medications.

Kristin Kruse Zeij, a spokeswoman for Novo Nordisk, said in a statement that the congressional committee’s report presented “a limited picture of the efforts” put forth by the company to establish drug formulations, though it also served to demonstrate the need for “comprehensive solutions” that would “ensure affordable options for everyone.”

Sanofi did not respond to requests for comment.

Many diabetics are looking for help from the Federal Trade Commission, the government agency that enforces competition policy and consumer protection. Their pleas have become part of the public record because the FTC recently began opening its regular commission meetings up to the public, for the first time in 20 years.

A vocal group is demanding a corporate crackdown by the FTC, which is now led by a hard-charging 32-year-old director, Lina Khan, a former academic and open-competition activist who has pledged to get tough on monopolies and price-fixers.

Matthew Dinger, a Type 1 diabetic from Salt Lake City, for example, told the FTC commissioners in October that he briefly lost his insurance last year when he changed jobs and was forced to skip taking his prescribed insulin because the out-of-pocket cost was unaffordable.

Dinger blamed the high price of insulin on market dominance by the three firms, which he said had created an “established record of anti-competitive behavior, frequently raising prices within days or even hours of each other in search of higher and higher profits, no matter the impact on patients,” he said, asking the FTC to investigate the lack of competition in the insulin market.

In an emailed statement, FTC spokeswoman Betsy Lordan said the FTC does not comment on or confirm the existence of investigations.

But she said that agency officials had “taken notice of the public comments made both orally at our public meetings and the written submissions for our FTC records.”

She added that agency leaders have announced the creation of a new working group that would operate internationally to “update their approach to analyzing the effects of pharmaceutical mergers.”

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