In 1922, Frederick Banting, Charles Best and James Collip discovered a way to provide insulin for the treatment of diabetes. At the time, the discovery was groundbreaking. Diabetes patients had been previously relegated to a starvation diet to manage their symptoms.
Then, a year later, they sold their U.S. patent for insulin for only $1, leading many to believe that the three University of Toronto researchers understood the importance of making their treatment affordable.
“It is indisputably proven that for normal metabolism of carbohydrate in the body, adequate amounts of insulin are essential,” Frederick Banting said during his 1925 Nobel lecture.
Nearly a century later, the affordability of diabetes treatment has become a front-and-center national debate as the cost of insulin has increased exponentially in recent years. Some families are paying more than $1,000 a month to cover insulin costs for their children with Type 1 diabetes. And nowhere is the conversation more relevant than in South Carolina, where Type 2 diabetes rates top nearly every other state in the country. The estimated cost of treating diabetes in South Carolina alone is almost $6 billion a year, according to the American Diabetes Association.
This year, Dawn Yamashiro and her husband paid $1,200 a month to cover the cost of insulin for their daughter's Type 1 diabetes. The expense nearly drove them to bankruptcy.
“It’s sad it’s come to that,” said Yamashiro, who lives just outside of Columbia in the small town of Ballentine, which is nestled along Lake Murray.
Likewise, Charleston resident Tanya Hanchon worries about the cost other families are facing. While her daughter Kate’s insulin is mostly covered by health insurance, drug prices tracked by researchers with GoodRX have shown that the cost of insulin across the board has increased by 64 percent in the past four years.
“We have health insurance so we’re OK,” Hanchon said. “I don’t know how people do it.”
Nationally, diabetes is one of the most prominent chronic diseases, and in South Carolina it’s worse than in most places. According to the annual State of Obesity Report, South Carolina has the fifth highest diabetes rate in the United States. And new research published this year projects that by 2030 100 million more people will be diagnosed with diabetes — and with that comes a corresponding increase in insulin usage.
Lorie Hanna, a registered nurse and a diabetes educator at East Cooper Medical Center in Mount Pleasant, said Lowcountry hospitals see these trends firsthand as adults who can’t manage their symptoms — and in some cases can’t afford their medication — become hospitalized.
“I see it every day,” Hanna said.
'A lot of folks can’t afford it'
Most people naturally produce insulin. The hormone is released from the pancreas and helps convert glucose, or sugar, into energy for our cells.
But when the pancreas doesn’t produce insulin, or produces too little, the result is high blood sugar. This can lead to Type 1 diabetes. Type 2 diabetes, by contrast, is caused when the body doesn’t use insulin properly and can often be managed with diet, exercise and medication.
“You can arrest the progression of the (Type 2) disease," said Dr. Louis Haenel, an endocrinologist with Roper St. Francis. “That’s the No. 1 way to treat the disease.”
For people with Type 1 diabetes — referred to in the past as juvenile diabetes because patients are often diagnosed during childhood — insulin is an absolute necessity.
“With Type 1, there is no amount of healthy choices that eliminate that need,” said Beth McCrary, the development director for the local chapter of the Juvenile Diabetes Research Foundation.
According to McCrary, the cost of a single vile of insulin without insurance can range from $250 to $500, depending on the type and the dosage. Some patients with Type 1 diabetes may require one vial of insulin every week.
“A lot of folks can’t afford it,” McCrary said.
Dr. Matthew Bartels, the chief medical officer for BlueCross BlueShield of South Carolina, said a number of factors contribute to insulin’s cost. One is that only a few companies make the treatment and another is that insulin is created from a unique process that isn't easily duplicated.
With 13 percent of all South Carolinians having diabetes, the high incidence of the condition further contributes to the amount patients spend on treatment, Bartels said.
Data reported by the national Blue Cross Blue Shield Association in a recent Health of America report found that of the top 30 medications that drive insurance drug spending, three are related to the treatment of diabetes. Two of those are insulin, and both ranked in the top 10 among all medications.
“While we seek competitive pricing from insulin manufacturers, there is little incentive for them to significantly negotiate pricing or to develop generic versions,” Bartels said.
For adults who are uninsured, this cost can be even more of a concern.
According to Dr. Khoa Truong, a health economist at Clemson University, an estimated 15 percent of non-elderly South Carolinians are uninsured, compared to about 12 percent nationwide.
South Carolina is one of 14 states that has not expanded Medicaid eligibility under the Affordable Care Act. More than 100,000 adults would qualify for low-income coverage if lawmakers adopted the expansion.
Truong said the majority of uninsured adults in this state often delay getting care because of cost, and many of them also suffer chronic health conditions.
“Lack of health insurance is still a very significant challenge for South Carolina,” he said.
'It kind of hit all of a sudden'
Seven years ago, when Dawn Yamashiro's daughter Amy was 10 years old, she and her husband started noticing that Amy was losing a lot of weight.
But it wasn’t until Amy mentioned having to go to bathroom a lot at school one day that they decided to check with a medical professional. That’s when they learned she had Type 1 diabetes.
“It kind of hit all of a sudden one day,” Dawn said.
For a while, Yamashiro said, they were OK when it came to paying for insulin and she didn’t understand why so many people were complaining about the cost of it. The most they would pay was $60 a month since her husband, Nobuo, had very good insurance, she said.
But last year her husband decided to switch their coverage from Cigna to United. That’s when everything changed.
When she went to get her daughter’s insulin prescription filled after that insurance adjustment, even the pharmacy tech was shocked at the price. Instead of the usual $60, the insulin cost $1,200.
“To have the pharmacy tech react the same way a parent would, you know something's wrong,” Yamashiro said.
For the next six months, she said they struggled to pay for their daughter’s insulin, opting to use a credit card for the payments. During this time, Yamashiro said that she and her husband were constantly weighing their obligations between their mortgage payment and their daughter’s life-saving medication. All the while, she and her husband were both working vigorously to find any kind of assistance.
“It shouldn’t have to come to that,” she said.
It wasn’t until recently, after a lot of trial and error, that they came across a prescription assistance program. This helped them make payments until her husband was able to get back on his old insurance.
“It’s been a very stressful six months," Yamashiro said.
According to a study funded by the Leona M. and Harry B. Helmsley Charitable Trust, even though there will be an increase in diabetes diagnoses, only half of the projected 510.8 million diabetes patients in 2030 will have access to an adequate supply of insulin.
Yamashiro said she does worry for her daughter’s future and the other families paying out of pocket for insulin. She said the only thing her daughter should be worried about is being a teenager, but there will come a time when she’s not on their family’s insurance policy.
“I don’t know how she’s gonna do it on her own,” Yamashiro said.