Rising cost of insulin puts many Americans at serious risk

NEW YORK (FOX5NY.COM) - Marymount College student Victoria Gagliardo-Silver has been living with type 1 diabetes for nine years. And it has cost her.

"The first time I had to go pick up my own insulin, I was baffled by how expensive the prices were," the Gagliardo-Silver said. "Without any insurance, it can run me upwards of $500 or $600."

That is for a monthly supply of insulin, a lifesaving hormone that regulates the amount of sugar in the blood.

Nationally, the price of insulin nearly doubled from 2012 to 2016, according to the Health Care Cost Institute. Why? The drug has no generic equivalent and many Americans have high-deductible insurance.

But the American Diabetes Association said that a lack of transparency makes understanding the drug's price spike hard.

Dr. Caroline Messer, an endocrinologist at Lenox Hill Hospital, said she agrees this is a nuanced issue.

"We can't just point fingers and say, 'You know, it's all the pharmaceutical companies' fault,'" she said. "There are so many players. There're retail chains, pharmacy benefit managers."

Whatever the reason, this has meant that Gagliardo-Silver and many patients have had to ration their insulin doses to cut costs. In some cases around the country, that has proven deadly.

"The question is, take everything and run out and not be able to eat? Or take little bits and hopefully stay alive," Gagliardo-Silver said.

Dr. Messer said she has seen an uptick in rationing, which is especially dangerous for patients with type 1 diabetes.

"We do sometimes see patients are not taking as much insulin as they should because they're trying to economize," Dr. Messer said.

But as the drug's prices have risen, so has awareness of the issue. The American Diabetes Association launched a campaign called Make Insulin Affordable that has garnered more than 363,000 signatures and counting.

Eli Lilly, one of three makers of insulin, said that last month it opened a Diabetes Solution Center to help patients reduce their costs.

"The list price of any medicine is affected by numerous factors, and people should not be paying those prices," a spokesperson said in a statement to Fox 5. "That's why we're focused on lowering what people pay out of their own pockets for insulin."

It went on to state:  "On August 1, we opened the Lilly Diabetes Solution Center, which is staffed with pharmacists and nurses who help people find customized solutions to meet their personal circumstances. Through the first month, more than 2,000 people have used our helpline to meaningfully reduce what they pay at the pharmacy. People who use Lilly insulin should call us at (833) 808-1234 to see whether we have a solution for them."

Gagliardo-Silver recently wrote a USA Today editorial on the rising costs of the drug.

"People need to be aware that diabetics are fighting this issue every day," she said.

A number of class action lawsuits are pending against the insulin makers.

And in June, a congressional hearing was held on insulin's rising prices.

But advocates say more needs to be done to make the lifesaving drug accessible to all who need it.