Best of 2019: Diabetics taking desperate measures as cost of insulin skyrockets

Note: This story was originally published on June 21, 2019.

Jacqueline Acosta’s job is to help people with their medical care, but because of the high cost of insulin, she is struggling with her own medical needs.

Hers is a common and nationwide problem that is alarming diabetics and lawmakers alike as the price of insulin has doubled, and even tripled in recent years.

Acosta, 49, is a care coordinator at Hartford’s Hispanic Health Council, a non-profit formed in 1978 to help the area’s Latino population with their health care needs.

She is a diabetic and is insured through her employer.  But the copay on her six-week supply of insulin is $50, much higher than that of her other medications, and she has to pay for syringes to administer the drug.

As a single mother supporting two teenagers on a salary of $35,000 a year, Acosta, who lives in East Hartford, says she often finds it difficult to pay for her insulin. The cost of the drug also makes it difficult for Acosta to pay for doctor visits and testing and she often skips checkups aimed at making sure her diabetes is in check.

“Sometimes I have to wait three, four, five days before I pick up my prescription,” she said. “And I have a co-worker that has the same problem.”

Insulin is a hormone made by the pancreas that allows your body to use sugar from the food you eat and keeps your blood sugar levels from getting too high or too low. If your body does not produce enough insulin or your cells are resistant to the effects of insulin, you may develop high blood sugar which can cause long-term complications, and even death.

Acosta is fortunate that she’s insured. In recent years, many diabetic patients without health insurance have found insulin to be completely unaffordable as its cost has jumped precipitously.

The Health Care Cost Institute reported that Type 1 diabetes patients – who generally must  inject themselves every day — paid an average of $5,705 for insulin in 2016, nearly double what they paid four years earlier.

But this raises an obvious question, of course. Why is a drug that’s been around since the 1920s so expensive?

Insulin was originally produced from cow pancreas, but drug companies in the 1970s found a way to mass produce insulin via bacteria and DNA technology.

The three largest makers of insulin — Eli Lilly, Novo Nordisk, and Sanofi — have made modest tweaks to their drugs over time. Those changes allow the companies to keep extending their patents, preventing competition.

The drug companies that manufacture insulin say there are a number of  reasons for the high price of their drugs.

“There is a complicated landscape of laws, regulations, market forces and supply-chain entities that impact the price of prescription drugs,” Novo Nordisk said in a statement. “Even for some patients with health insurance, high deductibles and restrictive formularies can make insulin unaffordable.”

Novo Nordisk also said “we know that as the health care system has changed, a growing number of Americans with diabetes struggle to pay for their health care, including medicines made by us.”

“As a company focused on improving the lives of people with diabetes, this is not acceptable,” the drug company said.

Some of the steps Novo Nordisk said it has taken to combat the problem are providing insulin at about $25 a vial at national pharmacy chains, including Walmart, and offering a co-pay assistance program “to help defray the costs of those who are experiencing high out-of-pocket costs…”

Novo Nordisk also said it has provided free insulin through its patient assistance program to nearly 50,000 people with diabetes who didn’t have health insurance.

Meanwhile, starting this month, Sanofi has made boxes of up to 10 insulin pens or vials available for $99.

And Eli Lilly is making a generic version of its popular insulin drug, Humalog, available for $137.35 a vial or $265.20 for a box of five pens — half the price of the brand name.

Critics of the pharmaceuticals say the steps the companies are taking are merely public relations stunts that don’t solve the problem and insulin prices are still too high, especially for diabetics who must inject themselves every day.

“Patient assistance programs are complicated, difficult to navigate and overly restrictive,” said Alvin Powers, a doctor with the Endocrine Society at an April congressional hearing.

‘People are dying’

Stacy Taylor, a family physician in Torrington who still makes house calls, said she has two patients, both on Medicare, who have been sharing and rationing their insulin because they can’t afford it.

“Neither of them has well-controlled diabetes,” Taylor said.

One of those patients had a heart attack and the other developed an eye condition linked to untreated diabetes that has damaged her vision. Taylor said another patient had a high deductible health plan and could not afford the drug. She ended up in a hospital intensive care unit.

While Taylor says she gives patients who need insulin the samples that she has in the office, “we don’t have enough of them.” Taylor points out that other nations, including Canada, negotiate the price of insulin and all other drugs with manufacturers, resulting in lower prescription costs.

“We need to do that too,”  Taylor said. “This is crazy, people are dying because of this.”

A recent Washington Post story focused on Americans who smuggled insulin from Canada because of the high cost of the drug in the United States. In a few high-profile cases, patients who rationed their insulin have died, creating pressure on states to act.

In May, Colorado became the first state to pass a law capping the copay for insulin at $100 a month for people with prescription drug coverage. And earlier this month, Kentucky Attorney General Andy Beshear filed a suit against Novo Nordisk, Sanofi, and Eli Lilly that alleges the drug manufacturers have “deceptively and greedily” increased the price of insulin over the past 20 years.

Congressional lawmakers are also repeatedly asking drug companies at Capitol Hill hearings why insulin is so expensive.

“I think everyone can agree that the system is broken, and the people who are suffering are the people who need insulin every second, of every minute, of every day, or they will die,” said Rep. Diana DeGette, D-Col.