As the U.S. Senate inched closer to passing a major health care overhaul this past month, Liz Donehue, a 29 year-old Seattle-area comic, took to Facebook to express her outrage.
“Only in America would someone need to move to a former communist country to get the level of health care they need in order to stay alive,” Donehue wrote. “Welcome to my situation.”
That’s not an exaggeration. Donehue is one of the estimated 1.25 million Americans living with type one diabetes. It’s a rare condition. Only five percent of all diabetics are type one. It’s chronic and expensive. To combat the growing costs and uncertainty of the U.S. healthcare market, Donehue is making a radical change in her life. She’s moving to the Czech Republic.
“The final push for me was when [the GOP health care bill] passed in the House,” Donehue told The Daily Beast. “People were so confident [U.S. President Donald Trump] wasn’t going to take health care from millions of people. As someone who has the potential to spend a lot of money on their health insurance, I have to think ahead.”
Though congressional Republicans failed to radically overhaul the U.S. healthcare system last week, they did little to alleviate the uncertainty around Obamacare’s future. If anything, that uncertainty has only been heightened by President Donald Trump’s threats to let the current system fail and his willingness to entertain policies designed to that end.
For diabetics, it is spurring what could best be described as a medical exodus. The Daily Beast spoke with half a dozen others suffering from diabetes in varying economic situations, all looking to leave the United States because of rising healthcare costs. One person making the departure put the cost differences between the U.S. and his native Canada at around $10,000 a year.
“I'm older, just over 50, and I work in tech,” Kevin Boudreau told The Daily Beast. “If I lost my job today I'm not sure I'd find another job easily given my age and the line of work. Without a full time job living in the U.S. … as a type one would quickly become very expensive. I don't see costs coming down in the near future, nor even the not so near future as I don't think government is even discussing the real problems.”
When the Senate failed to pass its “skinny repeal,” Kevin said he was relieved and happy. But it didn’t change his plans. “Out of control healthcare costs will eventually drive me out of the U.S.”
A Dangerous Disease
Type one diabetes is a complicated and stigmatized illness. Those who suffer from the diseases have a pancreas that simply won’t produce insulin. Type two diabetics often—though not always—develop the illness later in life because of poor lifestyle habits. People who overeat, eat the wrong thing or don’t exercise are at risk of developing type two. Type one is different. It can strike for a variety of reasons, involves genetic components, and requires insulin to manage. There is no cure.
For people with diabetes, managing the disease can take an enormous amount of time. Diabetics monitor blood levels using a variety of devices, need daily injections of insulin and regular trips to the doctor. The cost of the equipment, medicine, and doctor visits adds up quickly.
The Affordable Care Act was a boon for Donehue and others with type one. “Right now, with Obamacare, I’m not paying anything,” Donehue explained. “My insulin is covered. My doctor visits are covered … if the [ACA] does get repealed, it’ll be a problem.”
Though Obamacare remains intact, the continued threats to the law have left Donehue worried about managing her disease. So she’s begun looking for other solutions. The idea of going to the Czech Republic first came to her as repeal-and-replace efforts ramped up this summer. She’d been through the country years earlier on a backpacking trip and liked it. When she researched the cost of living, health care system and job opportunities, it blew her away.
Getting affordable health care in the Czech Republic as a U.S. citizen on a trade visa is complicated, but not impossible. It’s also far cheaper than anything America has to offer. Donehue’s already lined up her apartment, applied for the proper papers and scouted jobs. After she moves, she’ll pay around $75 a month to treat her diabetes. If she stays in the U.S. and loses coverage through the ACA, she’d pay at least $900 a month.
As a comedian, Donehue is in a particularly precarious situation. Her income is uncertain and even with a day job, it’s hard for her to get by. But she isn’t the only diabetic looking to leave America for affordable treatment. Even those with a steady income, find it hard to manage the costs of type one diabetes.
“I’ve got a PhD, I’ve got a good job, I make a fair amount of money and I am really really concerned about being able to pay my bills five years down the road,” said David (not his real name) a west coast scientist on a government fellowship, who spoke with The Daily Beast on the condition of anonymity.
David’s been worried about his job since the Trump administration took office. “I do environmental and human security work,” he explained. Many of his colleagues lost their fellowships in January and, for a brief period of time, he assumed he’d be losing his too. “I got a letter saying that I had six weeks. That they were canceling all research fellowships. Then I got a letter a week later saying, ‘Sorry. We made a mistake, your agency wasn’t supposed to receive these.’”
It’s a stress he didn’t need on top of dealing with type one diabetes. David said he’s paying $25,000 a year out of pocket for a health care plan through the federal government. That’s a quarter of his family's combined income. It’s an expensive plan because his diagnosis is new and he’s not sure what he’ll need and how much it’ll cost. He’s also got a newborn son and since diabetes runs in the family, he worries his kid might develop it too.
Like Donehue, David is looking to Europe as a means of managing the cost of his diabetes. “We deal with diabetes poorly in this country because it’s a complicated, expensive and chronic condition,” he said. “American diabetics don’t do as well European diabetics. In fact, American diabetics don’t do as well as most diabetics in the rest of the world.”
David’s waiting for his fellowship to end before he makes a firm commitment to leave the U.S. He’s looking at job offers in both the U.K. and Denmark. “I’d pay less than 2,500 pounds a year for my entire family. That’s including buying the [continuous glucose monitor] out of pocket,” he said. “In Denmark, it wouldn’t cost me a dime.”
“If I was single and didn’t have a child, I would have already moved,” he added.
Obamacare’s recent reprieve hasn’t made him feel any better about his situation. “As long as Trump is in office and the GOP holds both houses, I don't feel that I or my family is safe here.”
Stacie Boschma, a freelance copywriter in her 40s, told Vox she’s looking at leaving America too. Like Donehue, Boschma has type one diabetes and a plan through Obamacare. Now, she and her wife are meeting with an immigration lawyer and considering moving to the Netherlands. “I know it sounds extreme," she told Vox. “But right now, it feels like an extreme situation.”
The instability of the health care markets caused by both the ACA and its potential repeal are only part of the problem. The other is astronomical, and potentially criminal, increases in the cost of life saving medicines such as insulin. A 2016 study in The Journal of the American Medical Association noted that the cost of insulin had tripled from 2002 to 2013.
The costs have increased since 2013, with some uninsured patients now paying as much as $900 a month on insulin alone. The problem is so bad that lawyers in Massachusetts filed a federal lawsuit against drug manufacturers Sanofi, Novo Nordisk, and Eli Lilly. The lawsuit charges, among other things, of price fixing and driving up prices to bilk the chronically ill.
Those radical increases in costs have driven diabetics to take drastic measures to stay alive. Some drive across the borders into Mexico and Canada to buy medicine at reduced costs. Others gather online to trade supplies and keep each other alive.
“We've all been in a tight spot before either financially, insurance company issues or we've just come up short,” Type 1 Diabetic's Pay it Forward, a group with more than 15,000 members, explains in its description. “This is not a drug store for supplies, but rather a place we can all pay it forward or trade supplies to help fellow diabetics.”
If congress had passed its “skinny repeal,” the the already tough life of diabetics would have gotten much worse. And the possibility that lawmakers may take another swing at the law, as the Trump administration has instructed them to do, has the advocacy community on edge.
“The ACA ended fundamental inequities in access to health insurance that separated Americans with, and at risk for, diabetes and other chronic diseases from vital treatment, medications and tools for effectively managing their health,” the American Diabetes Association told The Daily Beast. “It also cemented numerous health insurance protections and included critical coverage for preventive care.”
As groups like the ADA lobby to keep Obamacare in place and to lessen the uncertainty around the law, those suffering from the disease may simply choose to avoid the debate. The death of the Senate’s “skinny repeal” has given Obamacare a reprieve, but diabetics such as Donehue and David no longer want to fight the American health care system and pay enormous costs to live normal lives. Not when other countries can do better.
“I’ll still be moving,” Donehue told The Daily Beast. “There's still three and a half years of bad decisions that Trump could make that could affect me. I do not trust him to do the right thing for the American people.”