Diabetic ketoacidosis is a terrible way to die. It’s what happens when you don’t have enough insulin. Your blood sugar gets so high that your blood becomes highly acidic, your cells dehydrate, and your body stops functioning.

Nicole Smith-Holt lost her son to diabetic ketoacidosis, three days before his payday, because he couldn’t afford his insulin.

“It shouldn’t have happened,” Smith-Holt said, looking down at her son’s death certificate on her dining room table in Richfield, Minn. “That cause of death of diabetic ketoacidosis should have never happened.”

The price of insulin in the U.S. has since 2012 alone. That’s put the lifesaving hormone out of reach for some people with diabetes, like Smith-Holt’s son Alec Raeshawn Smith. It has left others scrambling for solutions to afford the one thing they need to live. I’m one of those scrambling.

Not Enough Time

Most people’s bodies create insulin, which regulates the amount of sugar in the blood. The roughly 1.25 million of us in the U.S. with  have to buy insulin at a pharmacy because our pancreases stopped producing it.

My first vial of insulin cost $24.56 in 2011, after insurance. Seven years later, I pay more than $80. That’s nothing compared with what Alec was up against when he turned 26 and aged off his mother’s insurance plan.

Smith-Holt said she and Alec started reviewing his options in February 2017, three months before his birthday on May 20. Alec’s pharmacist told him his diabetes supplies would cost $1,300 a month without insurance — most of that for insulin. His options with insurance weren’t much better.

Alec’s yearly salary as a restaurant manager was about $35,000. Too high to qualify for Medicaid, and, Smith-Holt said, too high to qualify for significant subsidies in Minnesota’s Affordable Care Act insurance marketplace. The plan they found had a $450 premium each month and an annual deductible of $7,600.

“At first he didn’t realize what a deductible was,” Smith-Holt said. She said Alec figured he could pick up a part-time job to help cover the $450 per month.

Then Smith-Holt explained to her son what a deductible was.

“You have to pay the $7,600 out-of-pocket before your insurance is even going to kick in,” she recalled telling him. Alec decided going uninsured would be more manageable. Although there might have been cheaper alternatives for his insulin supply that Alec could have worked out with his doctor, he never made it that far.

He died less than one month after going off of his mother’s insurance. His family thinks he was rationing his insulin — using less than he needed — to try to make it last until he could afford to buy more. He died alone in his apartment three days before payday. The insulin pen he used to give himself shots was empty.

“It’s just not even enough time to really test whether [going without insurance] was working or not,” Smith-Holt said.

A Miracle Discovery

Insulin is an unlikely symbol of America’s problem with rising prescription costs.

Before the early 1920s, Type 1 diabetes was a death sentence for patients. Then researchers at the University of Toronto — notably Dr. Frederick Banting, Charles Best and J.J.R. Macleod —  a method of extracting and purifying insulin that could be used to treat the condition. Banting and Macleod were  for the discovery in 1923.

For patients, it was nothing short of a miracle. The patent for the discovery was sold to the University of Toronto  so that lifesaving insulin would be available to everyone who needed it.

Today, however, the list price for a single vial of insulin is more than $250. Most patients use two to four vials per month (I personally use two). Without insurance or other forms of medical assistance, those prices can get out of hand quickly, as they did for Alec.

Depending on whom you ask, you’ll get a different response for why insulin prices have risen so high. Some  — such as pharmacy benefit managers, like Express Scripts and CVS Health — for negotiating lower prices with pharmaceutical companies without passing savings on to customers. Others say  on incremental changes to insulin have kept cheaper generic versions out of the market.

For Nicole Smith-Holt, as well as a growing number of online activists who tweet under the hashtag #insulin4all, much of the blame should fall on the three main manufacturers of insulin today: Sanofi of France, Novo Nordisk of Denmark and Eli Lilly in the U.S.

The three companies are  in U.S. federal court by diabetic patients in Massachusetts who allege the prices are rising at the expense of patients’ health.

Eli Lilly and Company did not make anyone available for an interview for this story. But a company spokesman noted in an email that high-deductible health insurance plans — like the one Alec found — are exposing more patients to higher prices. In August, Eli Lilly opened a  that patients can call for assistance in finding discounted or even free insulin.

A Dangerous Solution

Rationing insulin, as Nicole Smith-Holt’s son Alec did, is a dangerous solution. Still,  people with diabetes admit to having done it. I’ve done it. Actually, there’s a lot of Alec’s story that feels familiar to me.

We were both born and raised in the Midwest, just two states apart. We were both diagnosed at age 23 — pretty old to develop a condition that used to be called “juvenile diabetes.” I even used to use the same sort of insulin pens that Alec was using when he died. They’re more expensive, but they make management a lot easier.

“My story is not so different from what I hear from other families,” Smith-Holt recently 

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Ryan Lennon Fines of Missouri seems like a typical 2-year-old. He and his parents, Scott Fines and Brianna Lennon, flip through a picture book of emergency vehicles. Ryan is looking for the motorcycle, but a photo of an airplane catches his dad’s eye.

“That’s an air ambulance,” Fines tells him. “You’ve been on one of those.”

When Ryan was born in 2014, his mouth wasn’t connected to his stomach. It’s a condition known as . After three months in a hospital in St. Louis, the family flew to Boston, where Ryan had surgery.

The surgery worked. Ryan is active and can eat normally — he had two big pieces of fruit leather and some crackers in the 45 minutes I was there. But all that time in the hospital was expensive. In the first six months of his life, Ryan’s insurance plan was billed $750,000. The family had to pay only $5,000 of that — Ryan’s maximum out-of-pocket expenses, under his insurance plan, for 2014 and 2015.

“We were lucky we had a really good, employer-provided [health insurance] plan,” Lennon said.

Now, the family is worried about Ryan’s future. He’ll still need between $20,000 and $30,000 worth of medical care every year. They have insurance through Fines’ work, but that Republicans passed in the House last week could affect Ryan’s care.

All six Republicans from Missouri — including , from the district where Scott, Brianna and Ryan live — voted for the bill, which unwinds many of the provisions and protections of the Affordable Care Act, known as Obamacare. In a posted to Twitter, Hartzler says passing the bill was an important first step to replacing the ACA.

“It covers preexisting conditions,” she said, “still retains the ability for young people to stay on their parents’ policies, and makes sure that there are no lifetime caps.”

That’s true, but the bill also gives states the authority to allow insurers a number of exemptions from the federal law. For example, while the GOP bill retains the ACA provision that people, like Ryan, who have cannot be denied coverage, there’s a potential loophole. In a last-minute amendment proposed by Rep. Tom MacArthur (R-N.J.), a state could to allow insurance companies to charge patients more (based on their health history) if their coverage lapses for more than 63 days.

That provision in the GOP bill would tremendously weaken the ACA protections, said , senior vice president of the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

“This would guarantee access to insurance for people with preexisting conditions in theory, but not really in practice — because they could be charged astronomically high premiums,” said Levitt.

Before the Affordable Care Act was enacted in 2010, he said, it was common for people with preexisting conditions to be charged much higher premiums or to be denied coverage altogether. If a state decides to waive the federal law’s protections, this could happen again.

The amendment would require that states seeking a waiver must also help people who have high health care costs. are the most commonly cited type of program to do this, but they were often underfunded and for consumers and states.

Missouri , a Republican, the GOP health plan in March. His office didn’t respond to NPR’s questions about whether he supports the current version of this bill or he’d want Missouri to seek permission to opt out of some of the provisions. Levitt said it would likely be conservative states, like Missouri and the 18 other states that did not expand Medicaid, that may try to opt out.

Those states, Levitt said, “made a decision to not go along with the Affordable Care Act, and I think that those states are facing a similar kind of decision here.”

Fines and Lennon say they face tough decisions if this bill becomes law.

“We would have to either move to a state that didn’t waive community protections or out of the country entirely if we could,” Fines said. “I’m not going to risk my son’s health on the political whims of Jefferson City.”

But before any decisions are made in Missouri’s state capital, the GOP bill is in the hands of the U.S. Senate, where it could change before becoming federal law.

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Darvin Bentlage’s health insurance plan used to be the same as all the other cattle farmers in Barton County, Mo., he said: to stay healthy until he turned 65, then get on Medicare. But when he turned 50, things did not go according to plan.

“Well, I had a couple of issues,” he said.

That’s putting it mildly.

Over two years, he dealt with hepatitis C and diverticulitis. That was on top of his persistent kidney stones, diabetes and other health problems.

“I had to go back and refinance the farm,” he said. “By the time the two years was up, I had run up between $70,000 and $100,000 in hospital bills.”

He does not want to end up in that situation again, so he is paying close attention to what Republican working its way through Congress might mean for him.

He racked up those medical bills in 2007. Bentlage said that given his preexisting conditions, health insurance became impossibly expensive — a problem because he needed more health care. So when the Affordable Care Act exchanges opened in 2013, he said, “I was probably one of the first ones to get online with it and walk through it.”

About of the people on the exchanges are between 55 and 64, and they have than younger people do. So they have a lot on the line if the Affordable Care Act gets replaced. Under the GOP plan, older people’s insurance cost could , but the subsidies would be capped at $4,000. That’s less than half of what Bentlage is getting now under the ACA.

“And my estimated income is less than $20,000. So I’d have to go back to Plan A and hope I make it to 65, you know?” he chuckled.

Insurance premiums tend to be higher in rural areas where the population tends to be older, poorer and sicker than elsewhere. And Maggie Elehwany of the National Rural Health Association said there’s another issue: 80 rural hospitals have across the country since 2010.

“We’ve got an access crisis going on,” she said. “What this House bill does is nothing — nothing to address the rural hospital closure crisis. You’ve got to understand that so much of that is linked to not only the health, but to the economic vitality of the community. If a hospital closes in a rural area, it closes for good.”

One reason for these hospital closures is that 19 states, including Missouri,  Medicaid, which left poor rural patients uninsured. The GOP proposal would cut Medicaid more over time.

Bentlage said his county recently increased property taxes to keep its hospital open.

“It falls on the farmers,” he said. “My property tax on the hospital went from about $80 to about $400. And it’s still in trouble.”

Missouri’s Republican congressional delegation Obamacare has failed. And Bentlage, whose positive experience with the health law once was featured in a healthcare.gov video, said the ACA does need work.

“There’s problems with it,” he said, “but I don’t think it’s worth scrapping.” All you need to do, he said, is look at how it’s helped him.

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She called up a major insurer in the St. Louis area where she lives, and it offered her a plan with a hefty $6,000 deductible — that’s the amount she would have to cover herself before the insurance kicks in.

When she balked, the salesman on the phone suggested that she could buy a “gap plan,” a separate policy for $50 a month to cover her deductible.

“After I got off the phone with him, I realized: That’s actually just insurance for my insurance,” she said, laughing.

Gap plans, used to cover out-of-pocket expenses like high deductibles, are becoming increasingly popular among consumers and businesses.

The rising price of insurance is driving the trend, explained insurance broker Ryan Hillenbrand, president of the Missouri Association of Health Underwriters.

“People see the prices of individual insurance and they say, ‘Boy, a $6,000 deductible seems really high. I don’t want something that gives me that much risk,’ ” Hillenbrand said. “That’s why [the gap insurance] market is heating up a little bit more.”

Gap insurance is in a category of insurance known as “limited benefit.” No matter how bad a person’s situation, the plan will pay out only a certain amount of money. “, now illegal under the Affordable Care Act, are another example of a limited benefit plan

Now, there’s renewed interest in gap plans. With monthly premiums on health insurance going up, more people are choosing cheaper, high-deductible options. In 2016, more than of people buying insurance under the ACA chose plans with an of $3,000 or higher.

Next year, the cost of one of the most popular plans available under the Affordable Care Act could by 10 percent on average across the country. That comes on top of a 5 percent jump the year before.

When consumers see those prices, Hillenbrand said, “they get sticker shock.”

“If you don’t qualify for a subsidy, you’re bearing the brunt of all that cost,” Hillenbrand said. “And here come the gap plans.”

About 8 in 10 people qualify for some form of subsidy on the ACA exchanges, helping to make insurance more affordable for consumers.

Businesses, on the other hand, are facing those costs on their own. And for some businesses, especially smaller firms, gap plans can make a lot of sense, said Alex Forrest, an insurance broker in South Carolina.

“The cost of health insurance is going up, and businesses have been forced to deal with that by raising their deductibles or increasing out-of-pocket costs for their employees,” he said. “That stinks.”

With a gap plan, he said, companies can offer a package of health benefits that keeps out-of-pocket-expenses for employees down. And they still spend less than they would on higher-priced plans with lower deductibles.

Forrest said he has seen more gap insurance products for businesses come to market in the past few years. They’re being marketed as a way to keep out-of-pocket expenses low for employees. This

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Missouri law requires pharmacies to keep controlled substances — drugs like oxycodone and fentanyl with a high addiction potential — locked up at all times.

Logan goes further than the law requires.

He’s been a pharmacist for 40 years. For the last 20, he has also been a reserve deputy with two local sheriff’s departments, investigating prescription drug abuse. That puts him on edge in his day job.

After his technicians count out a prescription for controlled narcotics by hand, Logan has them place the pills on a machine that resembles an overhead projector lit from the top instead of the bottom.

“There’s a camera up there,” Logan said. “It actually photographs each pill that we dispense.”

When he has probable cause to suspect that a customer is trying to get opioids with a forged or fraudulent prescription, Logan will arrest them on the spot. When he only has a strong hunch and they’re from out-of-state, he’ll escort them out of the pharmacy and direct them to the nearest bridge out of Missouri, about 9 miles away.

These run-ins with drug-seekers make Logan anxious to see the state enact a . A PDMP would be a statewide database tracking narcotics prescriptions, which doctors and pharmacists can check to catch signs of abuse or addiction and to intervene if necessary.

In the against America’s surging opioid drug addiction, 49 states, the District of Columbia and even Guam have . Missouri is the only state that hasn’t. A protracted political battle has kept the state from passing a law to establish one. That leaves pharmacists like Logan with few options.

He can only check the prescription history of patients on Medicaid, which tracks such data. But when a patient pays cash — a red flag for Logan — there is no record to check leaving pharmacists to guess whether the patient is in genuine pain, feeding an addiction or maybe looking for pills to sell.

“We want to take the best care of everybody that we can, and without a PDMP we are absolutely flying blind,” he said.

Restrictions Versus Privacy

State Rep. Holly Rehder, whose district includes Charleston, has championed establishing a database ever since joining the legislature in 2013.

“I’ve been working on this since my feet hit the floor,” she said.

It’s an issue close to her heart. Her cousin died of a drug overdose. Her mother was addicted to prescription medications. Her sister used heroin. And for 13 years, her own daughter has struggled with drug abuse — an addiction that began with a legal prescription for Lorcet.

“I’m very candid about it,” Rehder said. “I don’t believe God gave me a microphone to keep my mouth shut.”

She cites these databases’ success in limiting drug abuse in other states. They make it harder for pill-seekers to “doctor shop,” meaning go from doctor to doctor getting multiple, simultaneous prescriptions for the same drug.

One year after New York required its prescribers to check the state’s PDMP before writing a prescription, for example, doctor shopping dropped by an 75 percent.

Doctors surveyed in many states, including , say prescription drug monitoring programs have helped them identify opioid drug abuse and intervene with patients who need help. Those are reasons the federal government strongly recommends the databases.

For the third straight year, Rehder’s bill has passed the Missouri House and moved on to the Senate. There, each year, it’s been blocked by her main opponent on this issue, Sen. Rob Schaaf, a fellow Republican.

“It’s just the heavy hand of government taking away your liberty,” he said. In 2012, before Rehder joined the legislature, Schaaf led an eight-hour filibuster of PDMP legislation, an act that has loomed over subsequent attempts to pass a similar bill. This year Schaaf has called the bill “dead on arrival.”

The bill is currently in committee where a hearing on it has yet to be scheduled — and it likely won’t be taken up by the full senate before the legislative session ends May 13.

Schaaf is a physician by training. To some, that background makes him a surprising opponent to prescription drug monitoring, which is supported by the Missouri Academy of Family Physicians, the Missouri American College of Physicians and the Missouri State Medical Association, .

He argues that drug monitoring may inhibit doctors from prescribing medications that patients really need. His main objection, though, is about privacy.

“The monitoring program would put every citizen’s private drug information on a government database accessible to 30,000 people with usernames and passwords,” he said. “That’s just an outrage.”

Rehder doesn’t buy that argument. The database is electronic medical information, she said, so it would be protected by the same privacy laws protecting all electronic medical records. “It’s not like anyone can go on a phishing expedition in this data.”

“There is no data that is secure,” Schaaf countered, citing hacks against the IRS and the Department of Veteran Affairs, and even Hillary Clinton’s email imbroglio.

Rehder argues that 49 other states have faced these same questions about security and Missouri would be able to follow the best practices they’ve developed.

Schaaf said he isn’t entirely opposed to prescription drug monitoring. He said he would allow Rehder’s bill to pass the Senate if it included a provision that final approval for the database would be put before the voters — a test he doubts the bill could pass.

For the past three years, he has proposed his own monitoring legislation that would limit access to the database to Missouri’s Bureau of Narcotics and Dangerous Drugs, which would then communicate concerns to providers.

Rehder said she can’t support his bill because it would be cumbersome and impractical to implement, and that it’s doctors who should be making decisions with the data.

“Missouri is the only state that doesn’t have this. It’s very shameful,” Rehder said. “It’s hurting our population so much.”

In March, St. Louis County, which has one of the state’s highest drug overdose death rates, passed its own PDMP. Other counties have signaled they would consider doing the same.

Rehder said this is better than nothing, though she prefers a statewide database over a patchwork of county systems.

“We have got to start realizing that this isn’t something we can close our eyes and turn our heads to because it’s not going to affect us. It’s affecting us,” she said. “Our families are being torn apart, lives are being destroyed.”

Twenty miles down the road from Logan’s pharmacy and also in Rehder’s district, 33-year-old Jason Lynch is close to completing a 120-day stay at Mission Missouri, an addiction treatment facility.

Lynch was given his first prescription painkiller by an older student on the school bus when he was just 11 years old.

“I think right from the get-go I was hooked because the next day I was trying to get some extra lunch money to buy some more,” Lynch said.

He’s battled opioid use for 22 years, feeding his addiction with pills prescribed to him by doctors. “I would research [symptoms] on the Internet and say, ‘This is what’s going on with my back.’ “

Usually, Lynch said, the doctor would write him a prescription.

“It’s nobody’s fault but my own,” Lynch said of his addiction, but, he added, getting the pills “should have been a lot harder.”

“You just think about what if those drugs weren’t so available to him,” Rehder said. “How could his life have been different?”

This story is part of a reporting partnership with Kaiser Health News,Ìý,Ìýand .

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