John Lear’s eye bleed struck him three days before Christmas in 2018. He was at work as a school instructional aide for special needs children near Indianapolis when his vision got “blood-red blurry.”
It had happened before, but never so quickly, he said. Panicked, he called his wife Jennifer and had a coworker drive him home.
Lear has diabetic retinopathy, the leading cause of blindness for diabetics, according to the National Eye Institute. Chronically high blood sugar can cause blood vessels in the retina to leak fluid or bleed, obstructing vision. Eventually, it can cause the retina to detach, which left untreated leads to blindness.
Like 25 percent of diabetics, Lear sometimes rations his insulin—the drug a type 1 diabetic like him needs to live. And like almost half of Americans, the Lear family has a high-deductible health insurance plan, meaning they have to pay a lot out of pocket before their coverage kicks in.
To ease the financial burden of their plan’s structure and insulin prices, Lear switched to a cheaper insulin and began rationing. But that lead to more medical complications and consequently more medical bills. So now the Lears are stuck in a cycle of debt that’s often not mentioned in the Capitol Hill hearings about insulin prices or in the drug price legislation aimed at making drugs more affordable.
There doesn’t appear to be a solid number on how many diabetics have gone into debt to pay for complications due to their condition, but about one in five Americans have medical debt on their credit reports, debt attorney Jennifer Bosco from the National Consumer Law Center said. And research shows hospitalizations for diabetic ketoacidosis—a potentially fatal complication of diabetes—are on the rise.
There was a 59% increase from 2003 to 2014 in the total number of hospital discharges with the principal diagnosis of diabetic ketoacidosis, according to a 2018 analysis from the American Diabetes Association.
The cost? More than $5 billion in 2014, making complications from diabetes “a significant burden on the U.S. health care system,” according to the analysis.
It’s a burden for patients, too, who often end up footing the bill like Crystal Rosenlof, a beautician in Milwaukee. In December 2018 she thought she just had a bad stomach flu.
She put off going to the hospital because her insurance didn’t kick in until Jan. 1 and she feared a big bill.
Rosenlof blacked out after a few days of vomiting and woke up in the intensive care unit. A week later, she left the hospital with two things: a $200,000 bill and a new diagnosis as a type 1 diabetic. She’s not sure yet how much of the bill she’ll be stuck with, and she’s working with a financial counselor through the hospital to set up a payment plan.
“I’ll be paying it off for the rest of my life just because of how much it is and the correlation of how much money I make,” Rosenlof said.
May 16 a group of bipartisan Senators including Sens. Bill Cassidy (R-La.) and Maggie Hassan (D-N.H.) introduced legislation (S. 1531) to push back on surprise medical bills.
Last week President Donald Trump called for federal action on surprise hospital bills, and the heads of the House Energy and Commerce Committee began circulating a draft bill this month.
‘Upset and Angry’
As Congress sheds more light on insulin prices, patients have gotten more involved politically.
T1 International, a global nonprofit that advocates for access to insulin and diabetes supplies, is an example. The group—which doesn’t take money from pharmaceutical companies—had about five chapters in the U.S. at the beginning of 2019 and now has about 28, according to the group’s founder, Elizabeth Pfiester.
“There have been people upset and angry about this for a long time,” Pfiester said, but the attention high insulin prices and the cost of diabetes have gotten in the last year means that anger has finally “hit a critical mass.”
Whether it will be enough to spur federal change is yet to be seen. States have already taken things into their own hands by passing various versions of “Kevin’s Law,” which allows pharmacists to dispense an emergency supply of insulin to a patient without a current prescription.
As of February, it’s been passed in 12 states, according to T1 International. Indiana isn’t one of those states, and the Lears continue to worry about their insulin costs and how they’ll pay for treatment related to John’s eye problems.
So far about 30 percent of their monthly budget goes toward paying for John’s health care, not including the $1,283 that comes out of his paycheck each month for the family’s health plan premium. They have roughly $1,000 they haven’t paid in medical bills.
His doctor discovered he had a detached retina caused by his diabetic retinopathy, and he had surgery two weeks ago. His wife is anxiously awaiting the bill.
“We’re close to satisfying the individual deductible on John, so I’m being hopeful that insurance will actually cover a good portion of it,” she said. “But in the last year, it seems nothing is easy, so [we’re] just taking it a day at a time and we’ll deal with it as it comes.”