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Image: JEAN-FRANCOIS MONIER / Stringer / Getty

Shane Patrick Boyle died on March 18th, 2017, from Type I Diabetes. Not from late-in-life complications from the disease, or from some unexpected situation-Boyle died because he was $50 short of reaching his $750 GoFundMe goal to pay for a month's supply of insulin, the drug necessary to keep diabetics alive. After presumably stretching the meds he had as long as they could possibly go, he developed diabetic ketoacidosis (DKA), a fatal complication that results from the body being unable to move glucose out of the blood and into cells, where it's needed.

Boyle had recently relocated from Houston, Texas, to Mena, Arkansas, so he could be with his ailing mother Judith, who died a week before Shane did. By crossing state lines, he lost his prescription benefits. The cause of his death, really, was complications from waiting for his new healthcare status to be approved.

When you're on an ACA plan without an out-of-state network, you can only use their insurance for emergency or urgent care, not prescriptions, says Obianuju Helen Okoye, a public health physician and healthcare consultant in St. Louis, Missouri. Even when people think their plan has out-of-state coverage, that isn't always the case, since multi-state plans "don't necessarily have network providers or cover services in multiple states," according to healthcare.gov. In both of these scenarios, patients pay for prescriptions like insulin out of pocket.

Type 1 diabetes, which according to the CDC accounts for about 5 percent of all diagnosed cases of diabetes, is an autoimmune condition in which the body attacks and destroys the insulin-producing beta cells of the pancreas. Because their bodies cannot make insulin, type 1 diabetics require insulin prescriptions to live (in some extreme cases this is true for type 2 patients as well). Here's how Boyle himself put it in a 2015 interview he did with Zine Fest Houston, an event he founded:

For me, the most important invention of the last 30 years was the insulin pen, invented exactly 30 years ago. As a type 1 diabetic, I need insulin or I will die. I have a long-lasting insulin I take before bed and a fast-acting insulin I take before meals and whenever my blood sugar gets high. When I use insulin in vials, I have to keep them refrigerated, they break easily, and they can't be re-capped. I also have to carry syringes to draw the insulin out of the vials, and when cops or security searched me, they would often find the syringes and assume they were for drugs. The pens are much more portable, don't require refrigeration after they are opened, and are virtually unbreakable. They are expensive as hell, even with insurance, but when I can get them, insulin pens allow me so much more freedom than insulin in vials. I can carry insulin with me anywhere without needing a cooler. I can go on long distance bike rides, take trips on the Greyhound or spend a week traveling and staying in hostels.

According to his GoFundMe page (the multiple family members and friends we reached out to for this story have yet to reply), Boyle did what many type 1 diabetics have been forced to do in an attempt to survive: As he waited to fill his expensive prescription, he rationed what he had left, stretching it by taking smaller doses. "No doctor would recommend such a thing, but unfortunately, people who have difficulty affording insulin can go to extremes," explains Robert A. Gabbay, the Chief Medical Officer and Senior Vice President at Joslin Diabetes Center in Boston. Gabbay goes on to explain that when type 1 diabetics "take less insulin than they need, at the expense of having higher blood sugars... glucose rises significantly and in an attempt to find alternate fuels for the brain, keto acids are formed which are potentially toxic and lower the body's pH." DKA, "when left untreated, can be lethal," and can set in quickly. "In the absence of insulin a person might get DKA within 24 hours," Gabbay says.

Even though insulin access is literally life or death for all type 1 and some type 2 diabetics, prices have steadily risen over the past 95 years. According to an international survey of type 1 diabetics conducted in March 2016, the average out-of-pocket monthly cost of diabetes in the US is $360, with a single vial of Novolog insulin costing between $14 and $300 and a vial of Humalog insulin priced at $435. "Each person has different insulin requirements... for some people, one vial a month may be enough; for others several vials are needed," Gabbay says. The amount of insulin a diabetic uses daily can fluctuate depending on a number of factors, like whether they're sick, stressed or on their period.

With its pre-existing condition coverage, the passing of the ACA meant that insurance providers in the US were no longer able to deny diabetics coverage or treatment. While this was a positive step forward, moving towards coverage for all diabetics, it didn't solve the issue of insulin insecurity. Insurance companies still control how much insulin patients receive, often determining the amount by using a rough average across diabetics even though the amount needed varies from person to person and a single patient's needs can fluctuate from month to month.

"It's like someone saying "hey, you can only breathe this much air today," and then them shoving their fingers in their ears and going LALALALA when you tell them you need air to live," says Samantha Caviness, whose insurance would only give her 21 days' worth of insulin a month unless she changed to a mail-order pharmacy, a potentially risky proposition since insulin must stay cold and the glass vials could easily be broken during shipping. Since her doctor wasn't allowed to prescribe her more, she "started begging [at the] doctor's office for samples," learning what day of the month pharmaceutical representatives would drop them off. When her supply ran low, Caviness found expired insulin pens and used syringes to extract insulin and put it in her pump since she was unable to afford buying a new vial.

"If I had to pay retail for [insulin] I don't think I would be able to pay for it," says Breeann Wargo, who was diagnosed with type 1 diabetes when she was 6 years old. Unbeknownst to her, when she joined her work's insurance policy her prescription decreased, causing her to enter a "very time consuming process" to try to receive more than the limit her insurance company had set. When patients only have a limited amount of insulin, these lengthy insurance battles can be dangerous, especially since the process isn't always clear. "I didn't know what I was going to do if I ran out," Wargo remembers. "By the end of it I had no bottles left-and thankfully found half a bottle in my travel case I was able to use. I would fill my pump up and use it all the way until it said 0, [which] can be risky because there can be more air bubbles toward the end."

Like Wargo and Caviness, Brandy Wilson has also needed to find ways to make insulin last longer, wearing her pump for five or six days rather than the recommended three, in order "to use all of the insulin and not have to use as many supplies." When she learned that she was going to lose insurance because of a job change, Wilson began hoarding insulin, getting samples from her endocrinologist and having her doctor write scripts for more than she could use. The following year, under an ACA plan, she used the insulin she had stockpiled, saying of her experience: "you are paying $300+ a month for [ACA] health insurance that doesn't cover prescriptions until you reach your deductible, which is a few thousand dollars... [after the first year] I realized that it was cheaper for me [to be uninsured and] to purchase insulin out of pocket and just chance getting sick."

Novolin, an older and cheaper kind of insulin available at Walmart, is often pointed to as a cost-effective solution for diabetics, but according to Gabbay, "some patients just don't manage their diabetes best using these older insulins." In Caviness's experience they work too slowly, meaning she has to pay for and use more than her usual amount, making them still an expensive option. Regarding different brands of insulin, "insurance can dictate what is or isn't covered," Caviness says, even though "people can be allergic or [not] react well to one or the other." When Wargo's insurance changed her brand of insulin, it proved to be "quite the transition," causing her blood sugar numbers to fluctuate.

There are assistance programs for diabetics, but according to Wilson they can be difficult to find, since companies don't advertise them. She also spoke about the "few free clinics that help people with medications... [where] you have to go sit for hours... and go twice a month, which would cause you to miss work," meaning in the end that, "it really isn't helpful at all."

In sharing their experiences, all three women pointed to the potential physical dangers of going without insulin and the mental stress of not knowing if they would have enough insulin to last the month. "I've cried so many times over what might happen to me if I can't afford insulin, and I cry for those who can't," says Caviness, who despite her battles with her insurance company still considers herself lucky compared to many other diabetics.

In November Senator Bernie Sanders called for a federal investigation into suspected collusion in the pricing of insulin, and in January Donald Trump accused the entire pharmaceutical industry of " getting away with murder," a statement Sanders agreed with, though in a tweet he still wondered if "Trump and Republicans [had] the guts to police drug companies and lower prices." Though Republicans failed to repeal the ACA last month, Health and Human Services Secretary Tom Price has expressed plans to dismantle parts of the act by narrowing what it currently defines as "essential benefits" in coverage. Some diabetics fear this will cut their prescription coverage entirely.

As concerns about insulin availability have increased, paired with the fear of rising prices, advocates have sought to bring attention to this often-invisible issue by using #insulin4all across social media platforms. Insulin access is a topic discussed frequently within the diabetic community, but outside of it there is often little awareness of how serious insulin stretching can be.

Boyle's story represents the tragic outcome of inaccessible healthcare and the severe consequences type 1 diabetics who go without insulin face. Unfortunately, his experience is not unique. Unable to afford access to healthcare, people are turning to alternatives like crowdsourcing platforms to fill in the gaps left by insurance companies and current policies. As of press time, a global GoFundMe search yielded 19,281 results for people seeking money to help pay for diabetes-related care, with 1,365,758 results for others crowdsourcing to raise money to help cover medical costs. Under a GOP healthcare plan, those numbers only threaten to rise. Not everyone reaches their goal, and sometimes the money arrives too late.
Read This Next: Four Ways Healthcare Could Go Now that Paul Ryan's Plan Tanked

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The High Price of Insulin Is Literally Killing People

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Image: JEAN-FRANCOIS MONIER / Stringer / Getty Shane Patrick Boyle died on March 18th, 2017, from Type I Diabetes. Not from late-in-life complications from the disease, or from some unexpected situation-Boyle died because he was $50 short of reaching his $750 GoFundMe goal to pay for a month's supply of insulin, the drug necessary to keep diabetics alive.

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For many Americans the consequences of limiting care are grave
Perhaps less is more when it comes to technology or design but not healthcare. Less healthcare means less access to doctors, treatment and medication. And what if that lower standard of care starts costing you more?
When It Comes To Healthcare, Less Isn't More

That's certainly the experience of Campbell Charshee, a N.J. musician who is also a Type 1 Diabetic ( T1D). He recorded the financial costs of his medical care from 2014-2017, and how he had to ration his treatment based on his shrinking health insurance coverage. In four years, he watched his costs rise and his medical care narrow. This matters, even if you are not T1D. The same thing may be happening to your coverage. You may not notice it today but this same narrowing of access to care is happening for everyone across the US healthcare system.

Diabetes in the Marketplace

At 26, Campbell Charshee aged out of his mom's health insurance but his timing, appropriately for a jazz musician, was excellent. The new Affordable Care Act (ACA) marketplaces were about to open. Before the ACA, as a freelance musician without employee-based insurance, he would have found it expensive, if not impossible to buy health insurance. Pre-ACA Diabetes mellitus was often categorized by insurance companies as a pre-existing and therefore declinable condition. This meant that, "People with a current or past diagnosis of one or more listed conditions were automatically denied (Kaiser Family Foundation)."

Because the ACA prevents insurers from declining pre-existing conditions like diabetes, in January 2014, Campbell was able to buy a plan in the ACA marketplace in New Jersey.

Campbell, like all diabetics, uses his health insurance every day. Diabetes is a chronic disorder caused by the pancreas not producing enough insulin. If left untreated, it is fatal. Living with diabetes Type 1, the most serious form of the disease, involves a routine of taking daily insulin, delivered using a syringe, injection pen or pump. He must also check his blood sugar levels around 4 times a day either using test strips or, in an ideal world, CGM (Constant Glucose Monitoring) sensors that provide tighter control. Campbell describes this routine as "kind of a grind" but it's the only way to manage diabetes care.

This "grind" requires daily access to pharmaceuticals (insulin and support medications) and medical supplies (insulin pumps, glucose sensors, and testing strips) and this is expensive for diabetics.

"People with diagnosed diabetes incur average medical expenditures of about $13,700 per year, of which about $7,900 is attributed to diabetes."

-American Diabetes Association

It is also expensive for insurance companies to fund diabetes treatments, because it cannot be cured, and individuals like Campbell have to be treated from cradle to grave. Campbell doesn't think the health insurance industry wants to deal with "people like him".

"Insurance companies want to cherry pick who they provide coverage for. Not to individuals without much money and they certainly don't want people who are sick."

-Campbell Charshee

At $100M annually, diabetes is the costliest medical condition in the nation. 1 in 10 adult Americans have been diagnosed with Type 1 or Type 2 diabetes. 84M adult Americans have prediabetes that, if untreated, will lead to Type 2 diabetes within 5 years, according to the CDC. Statistically, that is 1 out of 3 people reading this.

What Pushed Campbell to the Financial Edge

We read about Campbell in a Huffington Post article that contained details of his annual medical costs over four years. It was a surprise to find that his premiums only increased by $100 over the period from from $346 (2014) to $446 (2017). Less of a surprise was a rise in his deductibles. His in-network deductible rose from $0 to $3,000 over the same period and his out-of-network deductible doubled from $2,500 to $5,000. However, this was the tip of the iceberg in terms of his costs. The real shock was the increase in his co-insurance from 30 percent to 50 percent, coupled with a skyrocketing increase in the cost of his medical supplies and pharmaceuticals. These took Campbell to the financial edge.

The price Campbell paid for his insulin rose from $160/year (2014) to $1,000/year (2017). His testing strips increased from $160/year (2104) to $1,000/year (2017). His health insurance also reduced coverage for his diabetes pump, the safest and most reliable way to deliver insulin. As a freelance musician, this rise in costs was beyond Campbell's budget so he cut back on what he describes as "inessentials".

"I started rationing my testing strips and pump supplies and discontinued my use of glucose monitoring sensors."

Diabetics need to check their blood sugar levels 4-7 times a day. Glucose sensors are attached to the body and provide continuous monitoring. The strips lance the skin with a small needle to test drops of blood. What frustrates Campbell is that the technology is available to improve his life but he can't afford it.

"If you use test strips you know what your blood sugar is going to be on a point to point basis. The sensors add a real time predictive accuracy to your blood glucose management and you can prevent bad glucose levels from happening. Sensors or strips should be readily available to all diabetics. There is no production limit. Just a financial limitation."

"Hey, you can only breathe this much air today!"

The rise in insulin costs was investigated in a powerful W ashington Post article last year that questioned why a drug, invented in 1921, that cost less than a bottle of shampoo in the 1960s, is now skyrocketing in price. The researchers who created insulin had hoped the drug would be a gift to humanity. However, according to the article,

"...the drug also has become a gift to the pharmaceutical industry. A version of insulin that carried a list price of $17 a vial in 1997 is priced at $138 today. Another that launched two decades ago with a sticker price of $21 a vial has been increased to $255."

The implications for the diabetic community have been devastating. Rationing test strips is a risk Campbell has been willing to take but what happens when a diabetic is forced to ration insulin?

"Insulin is your lifeline. You always need to be able to afford that. The other things, test strips, sensors, other medications, things that could improve the quality of care are not essential to survival. The rationing worries me. I've stared hungrily at drops of insulin at bottom of a vial."

Samantha Caviness claims her insurance company offered her 21-days insulin to cover a month supply unless she changed to mail-order. Mail order is always risky because glass vials break easily and insulin must remain refrigerated. Her response to the 21-day offer was, "It's like someone saying-"

"Hey, you can only breathe this much air today!"

Some uninsured or underinsured Americans just can't pay afford to these prices.

"On March 17 of this year, Shane Patrick Doyle of Arkansas died of diabetic ketoacidosis, because he had run out of insulin. He was $50 short of his $750 GoFundMe goal to buy the insulin that he needed that month."

- Vice News

The Burden of Care

It is hard to imagine the stress this causes, constantly balancing vital care with the money in your pocket. It's as if Campbell has three jobs, working as a musician, living with diabetes and dealing with his health insurance. However, he has a remarkably positive attitude.

"My perspective as a musician is having fifteen different jobs a week. My healthcare is like another persistent gig. I've spent significant amounts of time understanding and tracking down unadjusted claims, getting bounced back and forth between doctors and insurance, being told different stories in the hospital billing system."

In fact, he doesn't see his diabetes as his main problem.

"There are things I could do with better insurance to improve my care, but there are no real surprises. Dealing with insurance companies, there is always another surprise. What will not be offered next year? That's the biggest hassle of managing this illness.

What Will Happen in 2018

The premium for Campbell's existing plan will almost double in 2018 to $800. In fact, Campbell believes this is intended to force him to change plans.

"What I think this provider wants me to do is to look at one of their newer silver policies that has drastically reduced premiums, actually less than I pay now, but looking at their benefits, I find the network has been narrowed even further and the co-insurance levels that the insurance company will pay have been drastically reduced. It seems very much like a shell game to me."

Luckily for Campbell, who most probably would need to ration even more if he was forced to use this policy, he is now covered by his wife's insurance. She is a PhD candidate at NYU. So, thanks to their new insurance, his costs have "plummeted," at least, for the next 2 to 3 years. But in the meantime he's stepping up his work as a activist. He's joined forces with Art as Social Enquiry, an organization that combines art and advocacy and participates in the Vox healthcare forum, working for a better healthcare system:

"This is a problem that is not going away, if we continue down the same path."

-Campbell Charshee

Why We're Not Waiting

It is not just diabetes that is affected by this narrowing of care. 117M Americans suffer from chronic conditions. That's half the adult population. We see it in our users, often forced to seek treatment out-of-network for a wide range of conditions, including diabetes, mental wellness, and other conditions. Last week, founder and CEO of Better, Rachael Norman, presented at the 2017 Diabetes Mine Innovation Conference. It was in preparing for that conference that we read about Campbell. The theme of the conference was #werenotwaiting. This is our philosophy too. During our interview, Campbell described Better as "a company, finding an entrepreneurial solution to bring down patient costs." That is exactly how we'd like to be seen. Diabetes Mine isn't waiting. Campbell Charshee isn't waiting. Better isn't waiting either.

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Rationing Insulin for Diabetic Patients Is A Deadly Business

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Perhaps less is more when it comes to technology or design but not healthcare. Less healthcare means less access to doctors, treatment and medication. And what if that lower standard of care starts costing you more? That's certainly the experience of Campbell Charshee, a N.J. musician who is also a Type 1 Diabetic ( T1D).

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Americans rationing insulin as prices skyrocket

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26-year-old Alec Smith couldn't afford the $1,300 a month insulin he needed to control his diabetes, so he tried rationing it -- and died. His mother is now speaking out, telling NBC News she lost her son "because of pharmaceutical greed."

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The average price of insulin has skyrocketed in recent years, but the reasons for that increase aren't clear. Numerous parties play a role in the production and delivery of insulin to patients - including manufacturers, wholesalers, insurers, pharmacy benefit managers and pharmacies - and the pricing negotiations that occur between them are often confidential. There is a need for transparency in the insulin supply chain to identify changes that will lead to long-term improvement in insulin affordability.

Solutions are only as good as the information used to create them, which is why we strongly encourage transparency by all parties involved in establishing the process that determines how much individuals pay for insulin. This is the first step in creating public policies that will reduce skyrocketing costs and keep a steady supply of insulin within reach of all people who need it.

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STAND UP FOR AFFORDABLE INSULIN | THE ISSUE

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The average price of insulin has skyrocketed in recent years, but the reasons for that increase aren't clear. Numerous parties play a role in the production and delivery of insulin to patients - including manufacturers, wholesalers, insurers, pharmacy benefit managers and pharmacies - and the pricing negotiations that occur between them are often confidential.

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Twice the price for the same drug: Insulin prices have DOUBLED in recent years as companies egg each other on

An insulin prescription now costs $666 each month without insurance

Prices doubled between 2014 and 2016, following the appalling three fold increase between 2002 and 2013.

Insurance companies continue to hike premiums to keep up with demand

Drug makers keep finding ways to extend their patents, driving competitors to do the same and keeping generic versions off the market

Families have started turning to the black market for affordable insulin

Three main companies dominate the market and are being targeted by US lawmakers and patient law suits accusing them of colluding to jack up prices

The same vial of insulin cost twice as much in 2016 as it did in 2014, according recent figures.

As drug companies block generic drug-makers and push one another's prices up, insurers raise premiums to keep up.

Desperate families are buying and bartering insulin online when they can no longer afford it.

Lawmakers and patients have accused drug companies of colluding, but the prices for life-saving insulin have only continued to climb.

Price hikes for insulin are nothing new. Between 2002 and 2013, the prescription's cost tripled.

Insulin's steady inflation is driven by a combination of drug companies' 'price-shadowing,' improvements to the drug and competition-deterring patenting practices.

Today, a one-month prescription costs $666 without insurance, according to data from the Health Care Cost Institute (HCCI), a sum that's triggered outcry from US lawmakers who suspect drug company collusion.

The entire original patent for insulin was sold for $3 in 1923. A month's supply of the essential drug now costs 222 times that.

An estimated 1.15 million people in the US have been diagnosed with type 1 diabetes. These peoples' pancreases are unable to produce insulin, which breaks down carbohydrates and makes sugar useful to the body's metabolism, on their own.

To maintain healthy blood sugar levels, people with type 1 diabetes must have shots of synthetic insulin.

Another 21.9 million people have type 2 diabetes. If lifestyle changes such as weight loss and improved diet and exercise habits do not improve their conditions, they may eventually need insulin as well.

The drug was originally derived from animals, but for the last several decades, advancements in genetically engineered drugs have allowed scientists to hone the synthetic to be more like the real thing.

Now, most insulin is made from E. coli bacteria.

As the technology has improved, it has also become more widespread. In basic economics, competition typically drives prices down, but the pharmaceutical industry works a little differently.

Drug companies get patents on their products, giving them exclusive rights to the formula for 20 years.

Once a patent expires, generic drug companies can make their own, cheaper version.

But there's a catch. If a pharmaceutical company can make improvements to their drug that are small enough for it be functionally the same, but just significant enough to be called 'novel' by the patent office, they can effectively get a new patent on an old drug.

The practice, called patent 'ever-greening,' allows companies to keep raising or at least maintaining prices, and pushes their competitors to do the same. Each time these companies get a new patent, they push back the date when generic companies will be allowed to make their versions.

In the mean time, three major pharmaceutical companies - Eli Lilly, Sanofi and Novo Nordisk have been playing constant catch up with one another's prices.

Patients and regulators have taken note that shortly after one company's version of insulin becomes more expensive, the others quickly follow suit.

In response, insurance companies shuffle around which company's insulin they cover.

Some families have taken matters into their own hands, resorting to buying insulin on a black market insulin or looking to match with families for a trade of their respective covered covered kinds of insulin in private Facebook forums.

In January, a group of patients filed a class action lawsuit against the three main insulin producers for colluding to increase prices for the live-saving drug.

A year ago, Senator Bernie Sanders and Representative Elijah Cummings wrote to a the Department of Justice and Federal Trade Commission calling for investigations of the same three companies.

Earlier this month, President Trump nominated Alex Azar to be the next Secretary of the Department of Health and Human Services, hailing him as a 'star' for bringing down drug prices.

Azar has said that getting costs under control will be a top priority, but his previous post as CEO of Eli Lilly - the first of the three major insulin makers - has generated doubt from some. Others have outright blamed him for being the first to triple insulin prices.

There may be some hope for diabetes sufferers, as patents for some of the earliest long-lasting forms of insulin are approaching their expiration dates, and generics will be able to make substitutes.

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Insulin prices have DOUBLED but the drug has not changed

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An insulin prescription now costs $666 each month without insurance Prices doubled between 2014 and 2016, following the appalling three fold increase between 2002 and 2013.

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previously HEALTHY
STORY BY MICHELLE BOISE
PHOTO & VIDEO BY CASEY SJOGREN

hen I meet Darice Oxendine in her home, she holds two small shoes in her palms. The sneakers are white, rimmed in zebra print, the inside bright pink. I think of Hemingway's one-line poem: "For sale: baby shoes, never worn."

But these shoes have been worn. The toes are scuffed, and one of the white laces knotted into a large bow has a stain. I don't know if it's coincidence, but Darice is wearing nail polish that matches: white and bright pink.

"These were her shoes," she says.

I enter Robeson County, North Carolina, by a two-lane highway. Longleaf pines rise like matchsticks from the wetlands. Billboards read: "Fireworks - Jams!," "Short Men's Clothing," "Waffles and Wifi."

By means of North Chicken Road, I cross Moss Neck Swamp and stop for coffee. It's May, late spring and the heat is heavy at daybreak. People here are quick to say hello and ask you where you're from.

Railroad bells break the morning quiet, and a great, long train thunders across old tracks. When the last caboose marks the end, a litter of kittens crawls out from a storm drain. One holds a blackbird wing in its mouth. The mother, at a distance, boney-legged and crouching, watches me with silent green eyes.

About 90 miles northwest from the Atlantic Ocean, is Pembroke. Population: 3,009. It's the cultural center of the Lumbee Tribe, which claims more than 55,000 members.

The Oxendines, along with 88.9 percent of the population of Pembroke, belong to the tribe. As one local tells me, "Honey, there are as many Oxendines in Pembroke as there are catfish."

In 2013, Darice and Keith Oxendine's 16-month-old daughter, Reegan, was life-flighted from Scotland Memorial Hospital to the Pediatric Intensive Care Unit at UNC Chapel Hill. She'd suffered complications from a misdiagnosis, despite having been symptomatic for three months prior.

By the time she arrived at UNC and was properly diagnosed, it was too late. The excess sugar in her blood had damaged her vital organs beyond repair.

The official cause of death: Type 1 diabetes.

I've come to Robeson County to tell a story - I've come to understand how a previously healthy child died of a treatable disease.

I visit Darice at Deep Branch Elementary School, where she's a 5th grade science teacher. Her old book bag rests at her desk - a reminder, she tells me, that she was, and still is, a student. Darice completed a Master's degree in Technology and Education from UNC-Pembroke the year her second child, Reegan, was born.

She shows me a book, bigger than a Bible. Its pages teem with diagrams on ecological systems, biomes and the principles of physics. On the wall is the weather cycle - cotton balls for clouds and colored yarn for water movement.

At the start of the school year, Darice gives a PowerPoint presentation where the children have to guess if the statements she makes about herself are true or false. One statement: that she got a law passed.

"Most think it's false," says Darice. "Then I explain to them about Reegan's Rule and how we fought to get that passed. Of course their little faces get so sad when they realize Ms. Darice lost a baby."

Reegan's Rule encourages pediatricians to teach the symptoms of Type 1 diabetes to parents of children ages 1-6. Although it doesn't mandate testing as it was originally intended to, the diabetes legislation is the first of its kind.

"It's all about awareness," Darice says. "I told [my students] that she had diabetes, and we didn't know it. If they'd tested her at 1 year old, we would have realized it. I guess that's just the most frustrating part of all of this," she adds, "knowing it could've been avoided."

She looks at the clock; it's time for the children to change rooms.

"It could have been so simple," she says.

"Just a blood sugar test. She didn't have to die."

"That baby loved to dance."

Miss Libby lives down the road from the Oxendines. She's had a daycare for 23 years in her home. Her yard is full of toys: tricycles, balls and chalk. Inside are several cradles and high chairs. On the playroom door is the alphabet and numbers 1 through 10. There's a piano at the entry and a china cabinet filled with angel figurines.

Darice graduated with Miss Libby's daughter and the two "had been friends since forever," she tells me. So when Reegan was born, it wasn't a surprise that they asked Miss Libby to care for her while both worked - Darice at school and Keith at the correctional facility in town.

"Some of the children I've watched are grown and have children, and I've cared for some of those. These babies feel like mine - they feel like my grands."

Miss Libby says Reegan was a special baby. "They all are, but she was one of the most vibrant girls I had - full of life. I knew something was wrong but never once thought it was diabetes. She didn't want to eat; all she wanted to do was drink. The last day she was here, I noticed she'd lost a lot of weight in two week's time. And I can remember her sitting in the high chair. Darice said, 'Miss Libby please see if you can get her to eat.'"

"She always had a little belly on her because she loved eatin'," says Miss Libby. "But you could see her ribs that day. When I undressed her to bathe her after throwing up, you could see her ribs. And I said, 'Baby, why are you losing so much weight?'"

Miss Libby is crying as she speaks, her hands clasped. "If I had known that had been that last time holding her, I would have held her tighter."

"That day she went to Chapel Hill. I went to see her that Saturday. They'd just gotten her sedated, and I said, 'Reegie, It's Miss Libby. You ready to get back? 'Cause we're ready for you to come back to daycare.' I started saying all the children's names, and she held out that little hand and moved it. I said, 'We're waiting on you to come back so we can dance.'"

Miss Libby tells me about how they celebrate Reegan's birthday still. The children eat cake, and the daycare is decorated in balloons. From the back room Miss Libby takes the high chair she used to sit in and places it in the kitchen.

"She'd sit right here," she says.

It stares blankly at us, and there are no words for this moment. Outside, a car drives by, a child shouts. Inside, an old country clock marks a heartbeat of time.

"I have Type 2 diabetes," Miss Libby tells me. "And I said, why didn't I know right away? Why didn't I know? Was there something I could have done?"

She's weeping, her grief right on the surface.

"I know we can't bring her back. But I'll do anything to help. Darice has been fighting so hard to save the lives of other babies. I know the signs now. And if a baby doesn't want to eat and only drink, I ask their moms if I can check their sugar. 'It's just going to be a quick stick,' I tell them."

Type 1 diabetes is an autoimmune disease and, undiagnosed, an insidious killer. When people hear "diabetes," they usually think about Type 2 - a different disease, where the body is unable to properly use the insulin it produces. It's also called "insulin resistance."

Type 1 diabetes is another beast. For reasons unknown, the body attacks its own insulin-producing cells, called beta cells, believing them to be foreign and a threat. This behavior has disastrous consequences. Without the hormone insulin, the body can't process sugar (glucose). Without glucose, the body starves.

Something else happens at the same time - diabetic ketoacidosis (DKA). When the body can't get glucose to the cells for energy, it starts to break down fat and muscle. A chemical byproduct from this survival mechanism is ketones, which turn the blood acidic.

Without insulin, ketone levels continue to rise. As the unused sugar builds, the acidity in the blood increases to the point that it will start spilling into the urine and become noticeable on the breath as a distinct fruity smell. It will begin to wreak havoc on vital organs and systems, even affecting eyesight.

If the patient doesn't get insulin, he or she will lapse into a diabetic coma and die.

DUEL SHEPPARD
REEGAN'S GRANDFATHER

The Lumber River is a 133-mile stretch of black water that runs from North to South Carolina and eventually to the Atlantic Ocean. It is the same river, Darice says, she and her husband Keith went fishing on for their first date as teenagers.

Reegan is buried right beside it.

Duel Sheppard, Reegan's grandfather, takes a handmade wreath from his car. It's made of sparkling ribbon: purple, pink, and white. A plastic princess crown is secured to its top.

A handful of silk poppies are already in the ground. A broken plastic princess crown, left from a previous visit, lies beside the flowers. Duel places the fresh wreath in front of the grey headstone - it too, is shaped like a princess crown.

It reads "Princess Reegan" above her birth name, "Reegan Karice Oxendine." "May 12, 2012 - September 20, 2013."

"I got two plots here," he says. "I never anticipated Reegan coming here second. I thought it'd be me." He gives a short laugh and shakes his head.

Reegan is buried beside her grandmother.

On Reegan's grave her photo is etched inside a crown where a jewel would be placed. The baby is smiling, wearing a zebra shirt, a bow on her head. I learn later that this is the photo taken at her first birthday party.

"She had a little bubbly personality," Duel says of his granddaughter, "for the time that we knew her. Joyful, happy and carefree - much like her mother."

"Was it a surprise to the family?" I ask.

"Yes," Duel says. "I never did think once it was diabetes. It never did cross my mind to have the doctors check her blood and see if she had it."

Duel describes the sudden weight loss, a prevalent symptom of the onset of Type 1 diabetes. He tells me how he thought she'd gotten thin for a baby her age.

"To come on an infant like that," he says, "and to affect her so badly and acutely. Man, it was unrelenting."

According to her records at Purcell Clinic, her pediatrician's office, the toddler had lost a rapid amount of weight in the visits leading up to her death. Records show that at as a 2-month-old she was close to the 70th percentile. By her check up at 1 year old, she was at the 50 th percentile. Just 3 months later, she was down below the 10th percentile.

"Any significant weight loss should be a red flag to physicians. One must always look at the growth chart at well and urgent care visits," says pediatrician Raquel Burgos. "In this case this was a sign that something was seriously wrong."

At the start of what became 30 days on life support at UNC Chapel Hill, a hemoglobin A1c test was performed. The test gives an average of blood sugar levels over a three-month period. It showed Reegan's blood glucose started to be elevated soon after she turned 1 year old.

Marina Basina, an endocrinologist at Stanford, reviewed the medical records. "The main question is why was DKA missed for such a long time?" Basina said. "It looks like the symptoms [of Type 1 diabetes] started at least one to two months before presentation with DKA."

"Progressively, her appetite decreased," says Darice. "And I called the doctor's office, and they said, 'She'll eat when she's hungry.' And then it progressed to her drinking a lot, and they said, 'Well, she's got a virus.'"

"A virus," Keith says. "She went from being the healthiest of our two babies to the sickest."

Flu-like symptoms can often mask what is actually Type 1 diabetes. Sometimes a viral infection can be the environmental trigger that starts the onset of Type 1. Three months before Reegan died, she was diagnosed by Purcell Clinic with an "unspecified viral infection."

"Just keep her hydrated, they said," says Darice. "And then she started vomiting, so we took her back in."

Darice and Keith sit together on their sofa in their home. Their 12-year-old son, Keison, sits across the room. As Darice speaks, Keith and Keison nod, affirming the list of misinterpreted symptoms.

"And I remember calling up the doctor, and I said, 'Her breath has a smell to it.'"

She says the staff at Purcell Clinic told her they didn't know what the smell was and that it was most likely just acid reflux.

According to pediatrician Raquel Burgos, acid reflux is most often diagnosed in young infants and is much improved by age 6 months. At 16 months old, a new diagnosis of acid reflux is uncommon.

"We gave her medicine for the acid reflux," says Darice. "But she got worse. That's when we knew something was awfully wrong, like they just missed something."

The notes from Reegan's third and final visit to Purcell Clinic are brief and ominous: "Vomiting/LABORED BREATHING, FATIGUE. WAS SEEN HERE SATURDAY [4 days prior]."

Within the hour, Reegan was sent to the emergency room at Scotland Memorial Hospital in Laurinberg, North Carolina. It is here that her blood work was run. It was also the first time her blood glucose level was checked. The notes from the physician on duty say, "Lab called. Sugar +1000!!!"

A normal blood sugar is between 70 to 140 mg/dl.

Reegan was still not diagnosed with Type 1 diabetes, though. She was treated for dehydration and given insulin at Scotland Memorial, but nowhere on the records does it state that she was in DKA from Type 1 diabetes.

In fact, the life-flight nurse who moved her from Scotland Memorial to UNC Chapel Hill tells me, "The diagnosis that we got was respiratory distress, and rule out abdominal mass." Reegan's discharge diagnosis is "abdominal mass."

Upon examining Reegan's x-ray from Scotland Memorial, endocrinologist Basina explained that "this was most likely due to DIC (disseminated intravascular coagulation) or severe blood clotting."

"She was severely acidotic on admission," said Basina, "and had secondary infections from untreated diabetes along with organ failure that was not possible to reverse in such a young child."

When caught in time, most are able to manage the disease with insulin and constant monitoring of blood glucose levels. However, Reegan's case of misdiagnosis and diagnosis in DKA is not an anomaly. Multiple studies have shown that around 40% of people diagnosed with Type 1 diabetes are in DKA upon diagnosis. This problem is largely due to missing the warning signs.

Darice tells me that after Reegan passed, she talked to Joey Bell, MD, a Lumbee pediatrician in town, and asked him why he thought multiple physicians had missed the diagnosis. "He actually said, 'Even though I'm a Type 1 diabetic, you just don't connect children and diabetes. You think it only happens to adults.'"

This may be due to the fact that Type 1 diabetes is rarer than Type 2 - of the 30 million Americans with diabetes, only 5-10 percent of that population has Type 1. Moreover, the majority of people living with diabetes (both Type 1 and Type 2) are adults.

Reegan was also born into a primarily Native American population with elevated rates of Type 2 diabetes ( CDC). Robeson County in particular has a death rate for diabetes double that of the state.

In the span of four years 300 people died from diabetes in Robeson County ( health report)

The county population is just 134,168. While one can assume that the cause of death is mostly Type 2 diabetes, it is uncertain, as the report does not differentiate between Type 1 and Type 2 diabetes.

This failure to distinguish between the two diseases is not just a problem in Robeson County. In 2017, the Center for Disease Control published their periodic National Diabetes Statistics Report. Even in this extensive, governmental study, it states: "Most estimates of diabetes in this report do not differentiate between Type 1 and Type 2 diabetes."

"The fact that the CDC doesn't even segment the diabetes data by type," says Sarah Lucas, CEO of Beyond Type 1, a Type 1 diabetes nonprofit, "is a perfect example of how we are failing to even have the ability to provide accurate information. It's no wonder the community is confused."

Dr. Joey Bell was misdiagnosed with Type 2 diabetes in his 40s. One weekend, he says he felt an extreme thirst and began urinating a lot. He knew the symptoms. The next day he had his blood sugar tested. It was high.

"I have always been in good health," he says. "Very active, played sports and was never overweight, but I was treated as a Type 2 diabetic for two years until finally I was set up with an endocrinologist from Chapel Hill. He said I bet you're a Type 1. And I was."

"Do you have a history of Type 1 in your family?" I ask.

"No."

"Were you surprised at the diagnosis?"

"My jaw dropped," he says. "Like most Lumbees, the history is strong for Type 2, and me being in my 40s, they assumed I was Type 2. But I couldn't keep my blood sugar under control. I would be so tired; I could barely go to work. I would wake up at night, cramping. I lost 30 pounds, and I didn't have 30 pounds to lose. The first day I was on insulin, I was better."

I ask him if he has seen an increase in Type 1 diabetes in his practice.

"In the 28 years I have been practicing, I have seen more and certainly younger patients diagnosed as Type 1," he says. "Just this year, I diagnosed a 4-year-old. She didn't have the classic symptoms of drinking and peeing excessively and sudden weight loss. The reason I checked the blood sugar on that child was persistent vomiting."

"Most physicians, if you gave that scenario to them in a case study, Type 1 diabetes wouldn't come up on their radar. Because I have Type 1, I'm more sensitive to it. Blood sugar is at least part of something we should do in a work up.

Her blood sugar was so high we couldn't read it on the glucometer in our office."

"Do you think routine testing would be helpful?"

"That's a good question. I talked to Ms. Oxendine about that and with other physicians. I think it could be helpful. It is still rare, so you have to weigh out cost-benefit. I think there could be a place for routine testing, though."

SENATOR JANE SMITH

Not only is DKA life threatening, the costs for care are astronomical. Senator Jane Smith who helped pass Reegan's Rule tells me prevention is a lot cheaper than treating the end result. According to a 2015 study by T1D Exchange, "more than 12,700 pediatric patients in the U.S. are diagnosed with DKA each year. Researchers estimate the annual total cost of treating these pediatric DKA cases is approximately $90 million. Eliminating just 10 percent of these cases (approximately 1,200 patients) could result in a potential savings of $9 million per year."

At UNC Chapel Hill where Reegan spent her last 30 days, I meet a clinical pharmacy specialist who specializes in emergency medicine.

"How often do you see patients in severe DKA come in?"

"I see a DKA patient at least once a day, sometimes twice a day at a facility this big. We're a 900-bed hospital, so we get a lot of referrals from other hospitals."

"Do they have Type 1 or Type 2 diabetes?"

"A mix."

We discuss the feasibility of mandatory testing for early detection of Type 1 diabetes.

"I think if there were reluctance, it would just be because it's one more test you're doing in an otherwise healthy child that involves needles and is going to be upsetting or somewhat traumatizing. That being said, most pediatricians I work with and am acquainted with, they do it anyway."

"What's the cost of a blood glucose test?"

"A blood glucose test isn't particularly expensive. Here in the hospital if we have a suspicion of anything at all, we do them routinely, all day long. It's a fairly low cost test."

"What is the cost of treating DKA in the hospital?"

"Easily over $10,000 just for a one-day admission.

Most DKA admissions are not in the hospital more than 48 hours, but even for 48 hours, I think it could easily surpass $20,000, if not more."

I learn from the Oxendines that they are still paying a monthly bill for medical services from the days leading up to Reegan's death.

"It is clearly a mother's love for her child which goes far beyond," says Tom Karlya, a parent of a child with Type 1 diabetes and an advocate in the diabetes space who helped pass Reegan's Rule. "Darice was not stopping. If we all had that tenacity, certainly more would get done."

In May 2015, after much struggle, the statute of Reegan's Rule was passed by North Carolina legislators. It encourages pediatricians to teach the symptoms of Type 1 diabetes to parents of children ages 1-6.

Each year, 18,000 youth are diagnosed in the U.S. [ NIH]

While the legislation is the first of its kind in the diabetes space, its final version is not what its creators had envisioned.

The first draft of the bill asked that pediatricians be required to test children between the ages of 1-6 for Type 1 diabetes at their annual exams with a simple blood glucose test.

House Representative Charles Graham drafted the bill after Darice Oxendine came to him with her tragic story. I meet with Graham at a Burger King in Robeson County.

"I wanted to do something to prevent that traumatic situation [in reference to Reegan] from occurring again with another family," says Rep. Graham. "I got a lot of information from parents across the state and country who had had similar situations with their babies. I call them babies because that's what they are."

"When you say, 'similar situations,' what do you mean?" I ask.

"Misdiagnosed," he says, "and in DKA before being properly diagnosed with Type 1. When I heard Darice's case and then got all those emails from families saying their children, too, had been misdiagnosed, I saw the need to do something. That bill was filed as a clean bill. I wanted to have diabetes testing for young children."

"What is a 'clean bill'?" I ask.

"Meaning there's nothing attached to the bill. No other legislation that somebody else wanted to attach to it. Darice and I wanted to have children tested for Type 1 diabetes at their welfare visits. The legislature didn't like that."

"Why not?"

"They thought it was an intrusion of privacy, having legislature mandate what doctors do. They didn't take too kindly to that."

Despite Darice having collected 2,600 signatures, Graham tells me the legislature was unanimously against it - the pediatricians, the medical lobbyists and the medical professionals in general.

"So we had to lighten it up a bit," he says, "and I was willing to do that to get something legislative that would bring attention to the problem. I amended the bill to say that it would 'encourage,' not 'require' or 'mandate.' It would encourage the child's doctor to have discussions with and educate the parent on the symptoms of Type 1 diabetes."

"And how would they encourage?"

"A private conversation," he says. "And that's the problem we had with it; it is going to be at the doctor's discretion."

"When a child dies like this, who is culpable? Who is to blame in society?"

"I think the medical society is to blame," says Rep. Graham. "These folks are experts. Especially pediatric society, pediatric associations. They're to blame. They have these babies' welfare in their hands. I can't pass the buck on anywhere else. It's not the legislature; it's not the parent. They're doing their due diligence; they're following through on their treatment schedule. And if the doctors, in this case, did not do that one test, if they don't do that procedure, then these children are highly at risk. Same thing could happen to another family's child that happened to Reegan."

Pastor Stevie Jacobs is sitting in the pew, one row behind me, my back to the cross at the pulpit. Even though we sit at the entrance, his voice fills the church. He has a barrel chest and hands as big as dinner plates. Darice calls him "Papa."

"And clearly, I said to God, I just prayed, 'God, what in the world, what am I gonna say to these ... How am I gonna help them?'"

He was in the room when Reegan was taken off life support. He describes to me how Reegan was laid in her mother's arms, tears staining his dark blue polo.

It is early evening, and the church is empty, save the voices coming from the daycare center in the back. On a large brick wall is a stained glass window. The scene of the last supper - Jesus in the forefront, his disciples gathered around him, before the table, the offering.

"Just like you have faith in God, you have faith in the medical system," says Pastor Jacobs.

He raises up his big shoulders as he speaks, animating his words with every gesture.

"Sometimes we get used to systems," he says. "And we think because a system has brought us this far. It's alright. But systems always change. Systems like our society, our economy, like our education, our knowledge, they've got to be geared to change. The fault lies when we depend on old systems and cannot change."

The evening light is warm and forgiving. It bathes our faces as we stand in the Oxendine's front yard talking.

Darice's eyes are bright in the light, for the first time I see, green. She lifts a necklace from her chest to show me: a long silver chain with charms. "It's from my sister, Terena, and sisters in Christ Tennille and Sharkell."

I hadn't noticed it until now.

"Pink and purple beads with the crown represent her being a princess," she says. "Her initials R and K are for Reegan Karice. An owl because of her big bright brown eyes. A little sister charm with her birthstone and a rainbow because she was called over it."

In a small clear case is also a lock of black hair.

"When we are feeling sad," says Darice, "we minister and we sing. It's a stress relief. Our church has backed us and supported us in every way."

"The whole community," says Keith. "The whole community."

"That goes back to our tribe," says Darice. "We're a close-knit people, and loving. Our people are connected. We had so many praying for us and are still praying for us. Even though the boys [Keith and Keison] may be angry at times and I may be sad, we depend on each other. We lean on each other and love each other - that's how we've made it through, because of the Lord and because of people praying."

When Reegan was life-flighted to Chapel Hill, her family made the two-hour drive to the hospital, unsure of what lay before them. What a long journey that must have been. And then the month that followed, the many sleepless nights, the testing, the waiting, the hope, fragile like a winged thing in a rainstorm.

We know from the medical records that when they take Reegan off ECMO, the machine that is both breathing for her and beating her heart, there is a flurry of people around her. The report is short; they do not examine her as they had routinely done the previous 30 days. She is gone.

Just a week prior, Darice said she'd dreamt that Reegan sat up in her hospital bed and looked around. Keison, her brother, had called to say that she could get into all of his things, even his fishing rod, if she'd just come home.

She'd been dressed in her princess socks and a bow at the crown of her head.

Outside of oncology, there is a piano. I imagine Keith playing it, as they'd described to me, Darice and Keison singing with him. In the courtyard is a statue that looks like a slice of moon.

"Previously healthy" her medical records had read, at the start of every day, for the 30 days she was at Chapel Hill. "Previously healthy."

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previously HEALTHY STORY BY MICHELLE BOISE PHOTO & VIDEO BY CASEY SJOGREN hen I meet Darice Oxendine in her home, she holds two small shoes in her palms. The sneakers are white, rimmed in zebra print, the inside bright pink. I think of Hemingway's one-line poem: "For sale: baby shoes, never worn."

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Insulin has been around since 1923, so it came as a surprise in July 2015 when Cole LePere's doctor told his mother, Janine, to prepare to pay a lot at the pharmacy for it.

Cole, who was 10, had just been found to have Type 1 diabetes. But even the pharmacist was shocked to see the price.

Over and over, the pharmacist told Janine LePere, "This is really expensive." Each time she would respond, "I know, thanks, but I still need the medicine."

The pharmacist finally gave the LePeres the supplies - and a bill for $1,550.

That was after a $350 coupon.

As lawmakers and the public scrutinize dramatic price increases for other old drugs - most recently with the Mylan-owned EpiPen, which saw its cost go up by 500% in the past nine years - the next flash point may be insulin, a drug both ubiquitous and complicated.

And the story of why the LePeres are now paying as much as their mortgage payment on insulin, even though they have insurance and even though there are competing drugs on the market, is really the story of what has happened to the healthcare industry in America since the start of the century.

The need for insulin

The human body produces its own insulin. Some people can't.

When he got the diagnosis, Cole LePere found himself one of nearly 29.1 million Americans known to have one of the two types of diabetes. Cole's kind, known as Type 1, is an autoimmune disease. His body mistakenly kills so-called beta cells that are supposed to make the body's insulin, a hormone that helps people absorb and process the sugar in food. The roughly 1.25 million people in the US who have Type 1 diabetes need to inject insulin to live. Type 2 diabetes, the more common form, is something that develops either based on genetic or lifestyle choices, and doesn't always require that you need to take insulin.

These days his mother says she spends $1,100 out of her pocket each month on his diabetes supplies. The list price of the drugs he takes, called Humalog and Lantus and made by the drug companies Eli Lilly and Sanofi Aventis, have risen by about 300% over the past decade.

Many patients don't pay anything close to that sticker price. Some families Business Insider spoke with had their insulin mostly or entirely covered by insurance.

But at the same time drug companies were increasing prices for many drugs, insurance plans have been going through their own transformation, leaving more families like the LePeres on the hook for far more of that cost.

In half a dozen conversations with mothers of children with Type 1 diabetes, we heard stories like Janine LaPere's. The anxieties of these families don't just end with their monthly paycheck. Diabetes is a lifelong disease, and they worry too about what their children will do when they no longer have their parents' insurance covering them.

Now, you pay

One reason Janine LePere is paying so much for insulin is that the LePere family has a high-deductible health plan. Before the insurance company pays a penny toward drugs, she and her husband have to spend $7,000 each year. To make matters worse, that deductible is increasing to $10,000 in December, she says.

And these plans are rapidly becoming more common. In 2006, only 4% of people who worked were enrolled in a high-deductible health plan. A decade later, that's up to 25%. And the amount that people are paying for deductibles is rising as well. A Kaiser Family Foundation survey found that deductibles had gone up 63% in the past five years, 10 times the rate of inflation.

LePere was a salon manager, but she recently went to school to become a nail technician to earn more money to help pay for Cole's medication.

"This cost problem is yet another headache on top of complicated disease," Dr. Elbert Huang, a primary-care physician who has researched the cost of insulin, told Business Insider.

High prices particularly affect the US, though some other countries have trouble getting access to the medication in the first place, said Sarah Lucas, the CEO of Beyond Type 1, a non-profit focused on education and advocacy related to the disease.

What's old is new again

Given insulin's history, and the fact that more than one company makes it, it might seem odd that prices have been going up so dramatically.

Researchers first figured out how to manufacture insulin in animal pancreases back in the 1920s so that it could be injected into people. The doctor who developed it, Dr. Frederick Banting, won a Nobel Prize for the discovery in 1923.

Since then, there have been some big changes. In the 1970s, scientists figured out how to use recombinant DNA to manufacture real human insulin, so that it no longer had to come from animals. But in drug years, that is old, and those insulins are still in use.

The most prescribed types of insulin are called analogues, which are slight variations of human insulin that aim to help diabetics' bodies function more closely to how they would if they were able to produce the insulin themselves.

This is the kind Cole LePere's doctor prescribed. A 2011 World Health Organization review, however, did not find that analogue insulins had any advantage over human insulins, and at about twice the cost, the WHO said they're not worth the price.

Drug companies have a history of marginally improving drugs and then charging higher prices for the new versions. And doctors, who have little info about how patients pay for drugs, often prescribe what is seen as the latest and greatest, even if the extra benefit is small.

This is competition?

In most industries, competition drives down prices. But the market for insulin looks more like airline tickets. When one company raises the price, the others quickly follow. And in some cases the companies even seem to increase prices simultaneously.

Look at this chart featuring two similar short-acting insulins: Eli Lilly and Co.'s Humalog and Novo Nordisk's Novolog. The prices, gathered by Truven Health Analytics, are in such lockstep that you can barely see both trend lines.

It's a similar story with long-acting drugs like Sanofi's Lantus and Novo Nordisk's Levemir.

All these drugs serve similar purposes and have seen similar price hikes.

What's missing in the marketplace - despite insulin's age - is generic competition.

Unlike chemically derived drugs like statins to lower cholesterol, or pain medication like ibuprofen, insulin is made of living cells. The industry calls it a "biologic" product. It's a lot more complicated to manufacture.

A "generic" version of insulin would be something called a biosimilar, which is riskier to make. The drugs might have different reactions in your body.

So that's left the industry to three main players: Eli Lilly and Company, Novo Nordisk, and Sanofi Aventis.

The big 3

The companies do have competing drugs. For example, Humalog (Lilly's) and Novolog (Novo Nordisk's) are the two most prescribed short-acting insulins, while both Novo Nordisk and Sanofi make long-acting insulins (Levemir and Lantus).

But instead of driving prices down, the competitors appear to increase prices step-by-step (which is why the charts above look like a staircase), something that's referred to as " shadow pricing." It's not just the insulin market that is doing this: The same thing happened with the EpiPen market when a competitor came in around 2013 and with multiple-sclerosis drugs.

Ashleigh Koss, a spokeswoman for Sanofi, told Business Insider that Lantus had not had a price increase since November 2014 in the US. "In fact, because of aggressive discounting and rebates to insurance plans, PBMs, and government programs, the net prices of Lantus over the cumulative period of the last five years actually went down," she said.

When asked about pricing, Sanofi, Lilly and Novo Nordisk all highlighted discounts they provide, and also pointed the finger at health insurers.

"We know that many Americans with diabetes struggle to pay for their healthcare and, in some cases, this includes paying for medicines produced by us," Ken Inchausti, a spokesman for Novo Nordisk, told Business Insider in an email. "High deductible plans are still growing segment of all insurance plans. In addition to the significant rebates we provide insurance plans (including those who offer high deductible plans) to secure formulary positions, we fund co-pay cards and vouchers that commercially-insured patients can use for up to two years to offset those out-of-pocket costs they're incurring."

And while the drugs themselves might not change, the facilities in which they are made and the ways the insulin can be delivered have been upgraded. Gregory Kueterman, a spokesman for Lilly told Business Insider that the company spent billions of dollars on eight facilities that are used to produce and package insulin.

"We're spending a considerable amount of time studying this issue internally and talking to experts externally in this space. ... There are no quick and easy answers, because the system is complex and complicated," Kueterman said. "Even just simply lowering prices, while that seems like an easy answer, it wouldn't necessarily lower the prices of the high-deductible plan. They'd have to keep paying till they hit that deductible."

Anxiety and answers

The high prices don't affect all patients. Diabetes tends to be a condition that is well covered by insurers in comparison with other chronic diseases, like for example, hepatitis C. And many of the people living either with diabetes or with kids who have diabetes called themselves "blessed" to be able to manage the cost of care. For some, their copays were only $40 a month, and some kids were even covered under state plans.

But that doesn't keep parents from worrying about what happens once their kids age out of the state programs or out of their parents' insurance. Carole Andrew, a mother whose 18-year-old son learned he had diabetes a year ago, used the financial gravity of how much insulin costs to make sure her son takes his insulin.

"He wasn't as careful until I showed him the prices. It had a real impact," she said. Now that he knows how much it costs, he's been better about managing his blood-sugar levels.

Jessica Parkes, a 29-year-old who learned she had Type 1 diabetes when she was 20, found herself going into credit-card debt to pay for her supply of insulin. She had lost her job, she recalled, and her pharmacy benefit manager asked her to pay $400 in 2013 for a 90-day supply of insulin at a time when she didn't have health insurance. So she put it on her credit card and paid it off when she could. "I need my insulin to work and pay for the things I need," she said. "So I made my own payment plan."

The cost conversation could be entirely different by the time some of these kids have to leave their parents' insurance. Already, a drug called Basaglar is set to launch in the US in December as an alternative to Lantus.

Although we won't know the price until it's announced later this year, it's unlikely to be significantly cheaper.

But in the end, this isn't a disease these kids and young adults will outgrow. There will always be a need to get insulin in their bodies, no matter the method or price.

"What makes me angry is that people are taking advantage," LePere said. "They know that we will do anything, I will do anything, to make sure my son has medicine the rest of his life."

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A 93-year-old drug that can cost more than a mortgage payment tells us everything that's wrong with American healthcare

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Insulin has been around since 1923, so it came as a surprise in July 2015 when Cole LePere's doctor told his mother, Janine, to prepare to pay a lot at the pharmacy for it. Cole, who was 10, had just been found to have Type 1 diabetes.

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/ MoneyWatch

After years of rising prices, insulin costs in the U.S. are creating painful choices for diabetics and their families.

The problem is drawing the attention of lawmakers, with the Senate Committee on Aging examining insulin prices a hearing on Tuesday. One father testified that his 13-year-old son's insulin jumped from $300 for a 90-day supply in 2017 to more than $900 in early 2018.

"I immediately went into panic mode," Paul Grant, a project estimator for a building company in Maine, told the committee. "I tried to get answers from my insurance company but received little help or explanation. I don't think they even understand our health plan - I know I don't."

Grant, who said he ended up buying the same insulin from Canada, where it cost about $300, isn't alone. Insulin prices more than tripled from 2002 to 2013 and have continued to climb -- costs for the drug from two manufacturers rose almost 8 percent in 2017.

Diabetes, a disease in which the body fails to properly regulate blood sugar, affects 30 million -- or almost one in 10 -- Americans.

A deadly decision

One patient who was affected by the price spike was Alec Smith, who struggled to afford insulin after he aged out of his mother's health insurance plan. The then 26-year-old's employer didn't offer insurance, so he considered getting a health plan with a $7,600 deductible, his mother, Nicole Smith-Holt, told CBS MoneyWatch.

Instead, "He made the decision he would go without insurance" and pay out of pocket, she said. "We estimated [the insulin] would be $1,000, but when he went to the pharmacy, they told him it would be $1,300, so he went home without insulin."

Smith-Holt said she believed her son planned to buy the insulin, manufactured by Eli Lilly, when he received his next paycheck, and hoped he could ration his remaining supply. Instead, he died on June 27, 2017, of diabetic ketoacidosis, a complication resulting from diabetes that can be treated with insulin. It was a little over a month after he had left his mother's insurance plan.

"I thought it was a rare situation, like, 'This doesn't happen to anyone else,'" Smith-Holt said. But after her son's death, she heard from many others within the diabetes community, many of whom have had to make similar choices and risked adverse health consequences.

"We have people who are making life and death decision daily of, 'Do I buy groceries and or do I buy my insulin?'" she said. "We hear horror stories every day."

Smith-Holt, who traveled to the Eli Lilly shareholder meeting this month, said she was disappointed she wasn't able to read a statement at the meeting. Instead, she asked its CEO a few questions, such as whether he believes insulin is a human right. She said she didn't feel satisfied by the answers.

"Nicole traveled from Minnesota to our headquarters to tell Alec's story, and we took her visit very seriously," an Eli Lilly spokesman said in an email. "She's a woman with strong convictions who wants to make sure no one else falls through the cracks."

He added, "Nicole asked three questions, each of which was answered in the public meeting. The head of our U.S. diabetes team met privately with Nicole after the shareholders meeting, during which Nicole read her full statement and engaged in a productive and impactful dialogue about Alec."

One question posed by the Senate Committee on Aging is why insulin costs so much. After all, it's a nearly 100-year-old medication. Its inventors sold the patent for about $3 to help get the drug to as many diabetics as possible, and manufacturers were given the right to manufacture the drug without paying royalties.

An opaque system

But no generic version of the drug exists, and three manufacturers -- Eli Lilly, Sanofi and Novo Nordisk -- control 99 percent of the market. Adding to the complication is the tangled relationship between insurance companies, pharmacy benefit managers and drugmakers.

"There is a lack of transparency throughout the insulin supply chain. It is unclear precisely how the dollars flow and how much each intermediary profits," said William Cefalu, chief scientific, medical and mission officer at the American Diabetes Association, at the hearing.

Part of the issue are so-called "rebates" negotiated by pharmacy benefit managers and other players in the insulin market, which is a fee calculated as a percentage of the list price. But patients don't get the discounts and rebates negotiated between pharmacy benefit managers and drugmakers, nor are the rebates typically passed on to the patients.

Asked if Eli Lilly would considering lowering the price of insulin, the company spokesman said the issue "will require leadership and cooperation across many stakeholders, including manufacturers, payers, and policymakers."

"That's because the answer itself isn't simple. For instance, while the list price for Humalog has gone up, Lilly's average net realized price (the amount received after discounts and rebates are paid) has gone down since 2009," he said.

"I want to deconstruct that complicated web of transactions to figure out who is making so much money and why aren't discounts negotiated with manufactures reaching the patient, particularly the uninsured patients, but also the insured patient who has a high deductible," said Sen. Susan Collins, R-Maine, in the hearing.

To be sure, insulin isn't the only drug that's witnessed skyrocketing costs and a convoluted pricing system. A drug called Acthar surged more than 100,000 percent from 2001 to today, rising from $40 a vial to more than $40,000, according to "60 Minutes."

"There's an absolute opaque system of pricing for drugs in our country," Larry Morrissey, the mayor of Rockford, Illinois, told the news program. His city was hit with increased health care costs because of the drug. "That's part of the problem."

Need for transparency

In the meantime, efforts are underway in some parts of the country to shed light on insulin pricing. Nevada passed a law last year that will require insulin makers to disclose information on pricing, profits and discounts to pharmacy benefit managers. Two pharmaceutical groups are challenging the law, alleging it interferes with federal patent law.

Federal lawmakers may need to step in to ensure drugmakers provide more transparency on pricing, Jeremy Greene, professor of medicine at the Johns Hopkins University School of Medicine, said in the hearing.

"It's to everyone's advantage to point to each other while prices remain high," Greene said. "It's the uninsured patient and the taxpayer ultimately who is harmed by such a system."

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The rising cost of insulin: "Horror stories every day"

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As insulin prices surge, a mother recounts the financial squeeze that led to her son's death and that imperils other diabetics