Diabetes Patients Beg, Ration Insulin in Deepening Crisis

Alicia Ault


September 11, 2018

The high cost of insulin has been the subject of policy debates and white papers, but less public is the human toll, including hospitalizations and even deaths of patients who rationed their insulin to make their supply last longer.

Some patients are restricting their carbohydrate intake to reduce their insulin requirements. Others compromise their health by reusing blood glucose test strips and disposable insulin needles, or by discontinuing testing altogether. Some use insulins intended for animals or those purchased through an informal black market.

"There is a huge lack of understanding of the daily struggles," said Nicole Smith-Holt, whose son Alec died last year of diabetes-related complications after he rationed his insulin.

Out-of-pocket costs for insulin can range from $200 to over $1000 a month, forcing many patients to skip doses or modify their prescribed insulin regimen. The number of premature deaths related to insulin costs is unknown, perhaps because family members are ashamed to disclose how their loved one died, Smith-Holt said.

The stories of three people who died after rationing their insulin are well documented on the Internet: Smith-Holt's son, Alec Raeshawn Smith, 26, from Richfield, Minnesota; Shane Boyle, a 48-year-old man from Texas; and Antavia Lee Worsham, a 22-year-old woman from Cincinnati, Ohio.

Death, of course, is the most extreme outcome, but many more patients experience complications, some requiring intensive care. "I had a conversation with somebody on Facebook who had recently gotten out of the hospital [after being treated for] a very serious staph infection from reusing [insulin] needles," recalled Smith-Holt.

Justice--and Insulin--for All

For many, the cost of ongoing diabetes care puts them in a desperate situation. As a result, thousands of people have taken to Facebook, Instagram, and Twitter to communicate with fellow patients, friends, and strangers about their struggles, sometimes asking for financial help and sometimes banding together to work for change.

Social media users have rallied to increase patient access to insulin, diabetes supplies, and basic healthcare needs using the hashtag #Insulin4all. This campaign was started in 2016 by the British nonprofit group T1International, with the support of another UK nonprofit, the Pendsey Trust. #Insulin4all has since received support from the Access Alliance, a group that helps patients with diabetes form grassroots networks around the globe. Neither T1International nor the Access Alliance accepts any contributions from pharmaceutical companies or device manufacturers.

Many adherents of the #Insulin4all movement are critical of politicians and policy-makers, and they accuse the pharmaceutical industry of making diabetic patients "an underclass." They criticize such organizations as the American Diabetes Association (ADA) and the Juvenile Diabetes Research Foundation, saying they are not doing enough to address rising insulin prices in part because of their obligations to the drug and device industry.

"We're at a crisis level because we've been quiet about it, or pussyfooting around and not directly criticizing the people responsible for where we are," said Michael Lawson, who has type 1 diabetes and is a trustee at T1International.

"There's no other drug where 100% of the population will 100% die in days without it," said Hannah Crabtree, an accountant from Arlington, Virginia, who has type 1 diabetes and is active on social media with #Insulin4all. In June, she spoke to US House Minority Leader Nancy Pelosi and other Democrats about the consequences of the high cost of insulin.

Monopolistic Pricing: The Power of Three

The average price of insulin analogs tripled between 2002 and 2013, from an average of $4.34/mL to $12.92/mL.[1] In 2017, Americans spent $31 billion on diabetes medications, $15 billion of which was for insulin.

A host of factors contribute to the financial struggles associated with a patient's inability to afford insulin. There are currently only three insulin manufacturers in the United States: Eli Lilly, Novo Nordisk, and Sanofi. Data suggest that when one manufacturer increases the price of its insulin products (whether rapid-acting or long-acting), the other manufacturers likewise increase the cost of their own insulins shortly thereafter.[2]

Members of Congress have been looking into allegations of insulin price-fixing. In early 2017, 67 patients filed lawsuits alleging that the insulin manufacturers violated the Racketeer Influenced and Corrupt Organizations Act, as well as various state consumer protection laws, by engaging in an illegal scheme to inflate the benchmark prices of analog insulins to create greater profits for pharmacy benefit managers (PBMs). The three drug-makers recently sought to have the suit dismissed.

An ADA task force recently determined that insulin prices are increasing in part to make up for discounts and rebates that manufacturers pay to wholesalers, pharmacies, and PBMs. However, as with most pharmaceutical products, the insulin-pricing picture seems murky.

A Preventable Tragedy: Alec's Story

Since her son died, Smith-Holt has been attending rallies, writing op-eds, and working with Minnesota state House of Representatives member Erin Murphy to introduce the Alec Smith Emergency Insulin Act, which would make emergency supplies available to those in need.

Alec was diagnosed with type 1 diabetes when he was 24 years old. When he turned 26, he was no longer covered by his parents' insurance plan, where his out-of-pocket expenses for insulin were about $300 a month, Smith-Holt said. On his own insurance, those costs would have risen to about $1300 a month.

Many people are too proud or afraid to ask for help, and that includes talking to the clinician who prescribed their insulin.

Although Alec's parents were aware of their son's struggles to pay for health insurance, they had no idea that he was rationing his insulin.

Why didn't Alec reach out for help? "My theory is he felt like a failure—like he was not succeeding at being independent," Smith-Holt said.

Many people are too proud or afraid to ask for help, and that includes talking to the clinician who prescribed their insulin, said Clayton McCook, 40, of Edmond, Oklahoma, an advocate with the Washington, DC-based nonprofit Patients for Affordable Drugs. "I don't think those conversations happen as often as they need to," he said. McCook's daughter Lily, 10, has type 1 diabetes.

Diabetes experts agree that physician-patient communication on this topic is essential.

"The cost of insulin is a sensitive topic," said Irl B. Hirsch, MD, in an earlier Medscape interview. "Some patients are embarrassed when they canʹt afford their medications. I am honest with them. I ask patients whether they can afford their insulin, and if not, we try to come up with some solutions."

One solution he describes as a "worst case scenario" is using the older-generation human insulins: NPH and regular. They are available without a prescription at Walmart, for as little as $25 a vial.

Bargain-Bin Insulin?

Some patients, however, are dismissive of the option of using human insulin, which requires using a needle and syringe, versus the premeasured doses of newer insulin analogs delivered by pens. Patients often struggle to find the right dosing schedule.

"It's something that can help us get by, but it's certainly not a solution," said Lawson.

Ohio resident Tracy Jo Soppanish is also skeptical. Her husband, who is 46, was diagnosed with type 2 diabetes when he was in his 30s. After dietary modifications and metformin failed to adequately control his blood sugar, his physician prescribed daily insulin injections.

Describing her family as solidly middle class, Soppanish said they could afford the medications initially because both she and her husband are employed and receive coverage through her employer's health insurance plan. But then the copay rose to $300 a month when her husband's doctor prescribed canagliflozin, a sodium-glucose cotransporter 2 inhibitor, in addition to the insulin, and things got worse last year when the insurer refused to cover the second drug altogether.

Although they tried to enroll in several assistance programs, the couple was deemed ineligible because they had a health savings account. As a result, "we maxed out our credit card [to cover out-of-pocket costs]," she said. Eventually, they told his endocrinologist they could no longer afford the medications, and she suggested the Walmart insulin.

Soppanish noted that the over-the-counter insulin is the same type they used to give to their pet cat, and she questioned whether her husband should make that switch. Ultimately, he did, and he continues to take it twice a day. Since then, his A1c has risen dramatically, from 6% to 12%, she said.

When Less Is Not More

Some patients with diabetes have simply learned to live with less insulin, but the consequences can be both immediate and long-term. No one has yet quantified what the complication rates will be for the generation of patients with diabetes who are taking less insulin than what's prescribed to effectively manage their condition.

Yale University researchers found that 25% of patients surveyed were underusing insulin because of cost.[3] Those who were skimping were three times more likely to have poor glycemic control than patients who took insulin as prescribed.

Hospitalizations for diabetic ketoacidosis (DKA), which can result from missed or inadequate insulin therapy, increased significantly from 2003 to 2014, according to researchers from Albert Einstein College of Medicine in Bronx, New York.[4]

Lawson was one such DKA statistic. In 2001, when he was 20 years old, he had a lapse in insurance coverage. With finances tight, he decided to ration his insulin, "thinking I could get by without the amounts my care team was telling me to take," he said. As a result, he became hyperglycemic and was hospitalized.

Although Lawson currently has health insurance, he pays about $200 a month out-of-pocket for his insulin and supplies.

There Ought to Be a Law

Diabetes activists and patients offer a host of suggestions on how to manage the ongoing cost of diabetes management without going bankrupt. Some advocates argue that Medicare and Medicaid should be allowed to negotiate prices with manufacturers, whereas others believe the ultimate solution is for the United States to embrace a single-payer healthcare system.

Lawson is a fan of pricing transparency. In 2017, Nevada was the first state to pass a law requiring that drug companies disclose detailed information on how they determine and set prices for diabetes drugs, including insulin. To allow adequate time for manufacturers to comply, Nevada will not begin enforcing the law until after January 15, 2019.

Patient advocate McCook has been working on getting a similar bill off the ground in Oklahoma. "These transparency laws try to get at why prices are so high," he said.

After its annual policy meeting in June, the American Medical Association urged the US Federal Trade Commission and Department of Justice "to monitor insulin pricing and market competition and take enforcement actions as appropriate." The ADA, the Endocrine Society, and the American Association of Clinical Endocrinologists also have called for action to address the issue of insulin pricing.

Promises, Promises, and More Promises

In 2016, insulin maker Novo Nordisk promised to limit its price increases to the single digits, and in 2017, Sanofi said it would keep price increases at a level below medical inflation. Since late 2016, Eli Lilly has been offering discounts on its insulin brands.

Smith-Holt, however, said that she has little faith in the insulin manufacturers. After attending one of their shareholder meetings a few months ago, Smith-Holt met with a company representative. "I looked him right in the eye and said, 'My son died of corporate greed; I hope you can live with that.'"

Smith-Holt said the executive appeared empathetic during their meeting and told her he would share her ideas with the company and get back to her. "When I left there, I felt hopeful," she said.

To date, Smith-Holt has not heard from him.


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