De’Shonae Moody was rushed to an urgent care center where medical staff told the 14-year-old she had abnormally high blood sugar.
By the time she arrived at the hospital, her blood glucose levels were at 800 milligrams per deciliter. That’s nearly eight times outside what’s considered normal and bad enough she could have gone into a coma.
That night, a diagnosis of Type 1 diabetes meant Moody, who grew up in Virginia Beach, would join the ranks of millions of Americans who have the disease.
It also meant she’d be in another fight facing diabetics in the United States: the rising cost of insulin.
Without the medication, which mimics the hormone produced by the pancreas to regulate blood glucose levels, a Type 1 diabetic like Moody couldn’t live.
But over the last 20 years the price of insulin has skyrocketed, forcing some who are either underinsured or uninsured to go down dangerous paths like rationing their medication by taking smaller doses or skipping doses altogether. A monopoly of three big drug companies has played into less competition thus higher prices.
Moody, now 29, is a substitute teacher in Norfolk and Virginia Beach and got off her father’s health insurance three years ago. She has stretched her insulin doses beyond her doctor’s recommendation and borrowed medication from friends and family because she’s been unable to afford the next month’s supply.
Healthcare professionals worry most about patients like Moody — young, lower income and recently transitioned off their parents’ insurance.
Others in Hampton Roads have made similar decisions, doctors say, balancing when to pay the electric bill or groceries versus being able to budget in the next vial of insulin. It’s affecting patients with both Type 1 diabetes, where the pancreas doesn’t produce enough insulin, and Type 2, where the insulin produced doesn’t work well enough to control blood glucose levels. About 90% of people with diabetes have Type 2.
A small number of people locally have even resorted to another extreme: driving across the border to Canada where insulin is vastly cheaper, some healthcare professionals say.
“The prices need to go down,” Moody said at her doctor’s office this week in Norfolk. “Hundreds of dollars, that’s not fair for us. Not everyone has a high paying job. It’s not that we don’t want to work. It’s just those kinds of jobs aren’t that easy to get. They don’t know what other bills we have that we’re trying to survive on.
“It’s like either get your medicine or eat. Get your medicine or have somewhere to stay. That’s kind of hard.”
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Insulin was discovered nearly 100 years ago by scientists who sold the insulin patent to the University of Toronto for $1, hoping everyone who needed it would be able to afford it.
But the drug has only increased in price. A vial that cost around $25 in the 1990s now can go for $300. Between 2002 and 2013, the price of insulin nearly tripled.
Just three companies manufacture it: Eli Lilly, Novo Nordisk and Sanofi. They are part of a roughly $30 billion insulin market across the world, the health news website STAT reported.
“It is kind of a monopoly,” said Dr. Marta Satin-Smith, a pediatric endocrinologist at Children’s Hospital of The King’s Daughters, whose diabetes program cares for around 1,200 people between the ages of 1 and 23.
There is no true generic form of insulin. That’s due in part to how complicated and expensive it is to make the medication and still meet strict approval requirements set by the Food and Drug Administration.
With little competition, prices have continued to rise. Pharmacy benefit managers work with pharmaceutical companies to lower drug prices on behalf of insurance companies, STAT reported, but those discounts can end up increasing out-of-pocket costs. Other reports have pointed to myriad other factors, such as price negotiations with companies that aren’t transparent.
As prices soar, reports are surfacing about patients unable to pay.
A survey of 199 patients in New Haven, Conn., who had Type 1 or Type 2 diabetes found that one in four people admitted to cutting back on insulin use because of cost, according to a 2018 study by researchers at Yale University.
A more recent study from the U.S. Centers for Disease Control and Prevention found that close to 18% of working-age adults who have diabetes are skipping medication doses, taking less medication than prescribed or delaying filling a prescription.
In Virginia, Type 1 and Type 2 diabetes together affect about 10% of the population, rates similar to the rest of the United States, said Dr. David Lieb, an associate professor at the Eastern Virginia Medical School Strelitz Diabetes Center.
But some parts of Hampton Roads have almost double those rates. That includes parts of Franklin and Surry counties, the city of Suffolk and the Eastern Shore.
Factors could include high rates of obesity, which is a risk factor for diabetes, and demographics: minorities are more at risk of developing the disease. Another is lack of access to care, especially in rural parts of the commonwealth.
“It all kind of tracks with what people are eating, what kind of activity they’re getting and what kind of access they have to preventative care and education,” said Lieb, a Type 1 diabetic himself.
Advocates for lower prices have seen some recent success: a cap in Colorado of $100 on insulin co-payments for insured patients and a congressional investigation into high prices. And if passed, the federal Insulin Price Reduction Act introduced earlier this year would give manufacturers incentives to reduce list prices to what they were in 2006. The insulin would not be subject to deductibles, according to a statement from the American Diabetes Association.
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In Norfolk, James Sessoms has been struggling to afford his insulin.
The 68-year-old is on Medicare, his doctor James Newby said, and pays $90 out of pocket each month for the two types of insulin pens used to control his blood sugar.
When Sessoms first came to Newby five years ago, he had to undergo bypass surgery on his legs due to clogged up arteries, a direct result of his diabetes, Newby said. Since then, Newby hasn’t seen any regression while Sessoms has managed his disease. But he’s fearful.
There are certain months when Sessoms, a retired Chesapeake heavy equipment operator, says he can’t afford to pay for his insulin. There are other bills he needs to pay. When he can’t afford his medicine, he said, Newby has helped him with supplies.
But the doctor worries periods of uncontrolled blood sugar could lead the leg issue to crop up again. If he can’t undergo the same surgery, it could mean amputation.
These are the sorts of ripple effects insulin affordability issues can have. Another is how patients who can’t afford the drug might resort to the emergency room, which can pass costs onto hospitals.
Some local groups work to reduce those ER visits, like the weekly diabetes and hypertension support program at Southside Baptist Church in Chesapeake. Since April 2018 it has welcomed uninsured patients and people on Medicaid and Medicare who are struggling with diabetes.
Participants review their blood glucose levels with Mary Trosien, a nurse practitioner with Chesapeake Regional Medical Center, and meet with a social worker about resources. The group works to educate people on how to eat healthy. Each week, they give each patient a grocery bag filled with vegetables and fruits and talk about the importance of staying active.
Managing diabetes is about more than just insulin, Trosien said.
In Norfolk, Dr. Olivia Newby has lead similar efforts with her husband at their medical practice since 2012. Their Healthy Living Center is on the bottom floor of the Majestic Avenue building where many patients she sees have diabetes.
At an education class, her patients, including Sessoms and Moody, learn how to cook healthy foods, count carbs and monitor blood sugar levels. Outside the center, there’s a garden with fresh vegetables.
Moody came to Newby about a year ago and her office determined the 29-year-old had developed diabetic retinopathy, one of the leading causes of blindness for diabetics. She’s now getting injections to help.
For now, Moody has her mind set on a career in child care. She hopes to open a daycare center of her own, something her grandmother wanted to do before she died.
It’s been tough to save money while worrying about paying for her insulin, she said. While she qualified for Medicaid earlier this year, Moody fears she won’t be able to stay on it once she starts teaching in the fall.
One thing she knows for sure: Once she gets her day care center up and running, she’ll name it after her grandmother.
Gordon Rago, 757-446- 2601, gordon.rago@pilotonline.com
