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Desperate Families Driven to Black Market Insulin

Image: Gabriella Corley sits in her room

Gabriella Corley sits in her room in Elkins, West Virginia on March 24, 2017. Raymond Thompson Jr. / for NBC News

Fourth grader Gabriella Corley is trapped. She has type-1 diabetes and is allergic to the kind of insulin her insurer makes affordable — and her family can't pay for the kind she needs every day to stay alive.

Glancing at the cheerleader from Elkins, West Virginia, at a recent football game, held up on her teammates' shoulders, her grin as wide as her two fists in the air, you might not think anything was wrong.

Then you might notice the insulin pump about the size of a pager tucked into her black compression shorts, clear tubes going under her shirt. It infuses insulin directly into her body through a tube connected to a site on her abdomen.

As Insulin Costs Skyrocket, Families Turn to Black Market 1:44

"She's a beautiful, intelligent, amazing little 10-year-old girl who stands up in the face of adversity every single day without blinking an eye and does it with a smile," said her mother, 32-year-old Andrea Corley.

Soaring insulin prices and inflexible insurance policies have forced this working-class mom to take desperate measures outside the system to keep her child alive.

Gabriella is allergic to the kind of insulin her insurer covers at a $25 out-of-pocket cost. She can only take Apidra, but her insurance only covers 25 percent of the price, leaving the family to pay hundreds of dollars a month they can't afford.

So her mom has turned to the black market, trading for the medication with other families with diabetes she meets online, a tactic that regulators and health experts warn is a health risk. And she cut a back-end deal with a sympathetic drug rep: If she bought one vial he would give her 10 vials from his sample kit, nearly a one year's supply. Gabriella's grandmother covered the cost.

Image: Gabriella Corley at home
Gabriella Corley in her room in Elkins, West Virginia on March 24, 2017. Raymond Thompson Jr. / for NBC News

None of the Federal regulators NBC News contacted said that online trading of insulin is illegal, as it's not a controlled substance. However, the FDA did raise "public health concerns about patients sharing prescription drugs" which "are not safe for use except under the supervision of a licensed practitioner."

RELATED: Is Insulin the New EpiPen? Families Facing Sticker Shock

The Corleys know the risks, but are willing to do whatever it takes for their daughter.

Like the other estimated 3 million Americans with Type-1 diabetes, if Gabriella doesn't take her insulin every day, she could slip into a life-threatening coma.

"Insulin is not optional," for these patients, said Dr. Joshua Miller, an endocrinologist and Medical Director of Diabetes Care at Stony Brook Medicine in New York. "Not having access is a life-or-death scenario."

"I have to beg, plead, and borrow just to survive each month," said Andrea Corley. "I will go without eating if I have to, to make sure she is healthy and happy." And she has, with the family sometimes going without food or electricity to buy insulin.

Image: Gabriella Corley plays basketball in the driveway of her home
Gabriella plays basketball in the driveway of her home with her parents Andrea and Craig. Raymond Thompson Jr. / for NBC News

Life-Saving Drug, Skyrocketing Prices

The class of rapid-acting insulin Gabriella depends upon comes at a price — one that's risen 1,123 percent since 1996, according to data from Truven Health Analytics, even as more competitors have entered the market.

Her parents' insurer, West Virginia Public Employees Insurance Agency (PEIA), considers Gabriella's insulin Apidra "Tier 3," which means the family has to pay 75 percent of the price. A copay-reduction card from drugmaker Sanofi would help some, but would still leave them to pay $270 for one vial, which would last them about a month.

That's unaffordable, the family says. The Corleys work for public schools — dad is a janitor and mom is an administrative assistant — and live "paycheck to paycheck."

It would be a lot easier if Gabriella could take Apidra's competitor, Novolog, which would cost them just a $25 co-pay per vial under her insurance plan. But she's allergic; both it and its competitor Humalog give her large hives.

Apidra is Gabriella's "ONLY treatment option," her doctor wrote in an appeals letter to the insurer, requesting a lower copay. The doctor's request was denied.

Image: Gabriella Corley wears an insulin pump
Gabriella wears an insulin pump under her clothes. Raymond Thompson Jr. / for NBC News

A Circular Blame Game

Because the Corleys' insurance does cover some of the costs, they're not eligible for a reduced copay under company policy, said Diane Brown, Director of Communication for the West Virginia Department of Administration, on behalf of PEIA.

But this little bit of insurance coverage, which doesn't put the drug within reach, is also hurting them in another way. Since they're not uninsured, the Corleys don't qualify for free insulin under Sanofi's patient assistance program. She's written everyone from her state's Senator, Joe Manchin, to the state insurance regulator, with no pricing relief in sight.

NBC News contacted the drugmaker, insurer, and the pharmacy benefits manager or PBM, who is contracted to negotiate drug prices for the insurer.

Each party defends its policies, didn't offer the Corleys any new solutions, and tried to shift focus to each other.

The insurer pointed to the PBM, the PBM pointed to the drugmaker, and the drugmaker pointed back to the insurer.

Insurers, drugmakers, and PBMs wheel of blame
Statements from the companies created a "wheel of blame" when asked about the Corley's case. NBC News

Insurer PEIA said that member costs such as copays, deductibles, and premiums are based on salary and "are a defined benefit and not subject to alteration." In determining which drugs are covered and by how much, spokeswoman Brown said the agency follows the standard formulary, or list of covered drugs, of its contracted PBM, CVS Caremark.

In a statement, CVS Caremark spokeswoman Christine Cramer said, "In recent years, some manufacturers of diabetes medications have implemented large price increases that are having a negative impact on patients and their families."

And drugmaker Sanofi spokeswoman Ashleigh Koss told NBC News, "Patients should be sure to ask their insurers about medical exception policies and procedures for covering medications when a patient has an issue with a particular medication that is not covered."

Collateral Damage

Stories like that of the Corleys are "very common," said Dr. Aaron Kowalski, Chief Mission Officer for the non-profit Juvenile Diabetes Research Foundation. "If you have an allergy to a certain insulin, to have it be unaffordable, to have no choice besides staying up to date on car payment or rent, that's unconscionable."

The Corleys and other families are the collateral damage from contract negotiations between drugmakers, insurers, and PBMs whose pricing terms are protected as trade secrets.

Now, diabetes patients who were managing well for years are suddenly calling Dr. Miller and his colleagues in increasing numbers saying their insurers have suddenly changed which insulin they'll offer the most coverage for, sending patients scrambling to try different drugs and treatment plans that will be covered by their insurance.

Some patients have been known to ration their insulin and do without basic needs in order to afford insulin, according to a petition by the American Diabetes Association calling for Congress to hold hearings on affordable insulin access.

Every insurance provider typically has one insulin that is their "preferred" brand, based on the best deal they're able to negotiate with insurers through their contracted pharmacy benefit managers, said David Mitchell, co-founder of Patients for Affordable Drugs, a non-profit advocacy group that accepts no industry funding.

What's Behind the Huge Spike in Insulin Costs? Insurers and Drug Makers Blame Each Other 1:43

In order to keep plan costs down for everyone, an insurance practice called "tiering" makes affordable the brand of a drug with the lowest cost but comparable effectiveness, said Dr. Aaron Kesselheim, Associate Professor of Medicine at Harvard Medical School. If patients choose the more expensive drug, they can still get it at the pharmacy, but they'll pay several times more out-of-pocket.

"It's not only attempting to direct individual patients to the most cost-effective care, it also helps, ideally, to keep down health care costs for the system as a whole," he said.

But it can also be a "double-edged sword," said Dr. Michael Carome, Direction of Health Research for Public Citizen. On the one hand it gives leverage to insurers to say: If you want to get on the list of approved drugs, lower your prices.

"The downside is that it can lead to the exclusion of drugs," he said, "particularly when the health insurer doesn't grant exceptions in cases where it's appropriate."

As far as the industry is concerned, Humalog, Novolog, and Apidra are all equivalent insulins in terms of how they lower blood sugar levels. So whether or not your insurer covers it comes down to the deal they can cut.

But not every patient can use the drug their insurer has decided they can take, or afford the one they want to. Drugs' formulations vary. Some patients may have a reaction to the inactive ingredients or find that one kind works differently in their body, forcing them to relearn years of mental math performed at every mealtime.

"It's okay to tier but there has to be a way to have exceptions so if that drug doesn't work for the patient in the judgment of the patient and physicians," said Mitchell. "Otherwise they're not putting patients first."

Constant Fear

Image: Gabriella Corley shoots a basketball in the driveway of her home
Gabriella Corley shoots a basketball in the driveway of her home. Raymond Thompson Jr. / for NBC News

Cheaper insulins do exist. You can get an older kind of insulin for $25 at Walmart. However, it requires multiple daily injections and rigorous meal plans and vigilance, hard enough for adults to maintain. Andrea Corley said it hasn't been recommended by their doctor and they would be afraid of another allergic reaction if they used it.

There is no generic for insulin, though less expensive "biosimilar" versions may hit the market at some point.

For now, Andrea Corley says the insulin pump and the costly insulin it requires are the only way to give Gabriella and her parents the flexibility and control to enable the fourth grader to have as "normal" a childhood as possible.

Still, the family lives in constant fear.

Last month, Gabriella tried to spend the night at a friend's house. She ended up calling her mother to come take her home early. She was experiencing low blood sugars and was afraid of falling asleep and having the low levels lead to a diabetic seizure. She's had two in the past.

"That is the reality that she faces," said Andrea Corley. "She does awesome with counting her own carbs and dosing her insulin, but the reality of the matter is, she is a 10-year-old little girl who gets scared and sometimes feels like she has the weight of the world on her shoulders."

"But she battles on to another day, fighting the good fight, hoping and praying for a cure," said Corley.

Until then, she's set up a GoFundMe page to accept donations.

To contact the reporter on this story, email ben.popken@nbcuni.com.