Nearly 18% of working-age adults with diabetes are rationing their own medication by taking smaller dosages, waiting to fill prescriptions or skipping the treatments altogether, according to a new government study.

The finding, which comes from the U.S. Centers for Disease Control and Prevention, is not exactly a revelation. Over the past few years, there’s been no shortage of studies on people forgoing medical care because it’s too expensive, just as there’s been no shortage of stories about people suffering as a result.

Just last month, Jesimya David Scherer-Radcliff, a 21-year-old diabetic from rural Minnesota, died. His family said it was because he had skipped insulin doses he couldn’t afford.

Among the mourners at that memorial service was activist Nicole Smith-Holt, from nearby Minneapolis, whose 26-year-old son, Alec Raeshawn Smith, had died under similar circumstances in 2017.

“We lost another Type 1 diabetic due to insulin rationing,” Smith-Holt said. “This is something you know we hoped would never happen again.”

But it did, and it won’t be the last time unless the U.S. health care system changes in a pretty dramatic way. This latest study shows why.

Why Medications Are So Expensive In The U.S.

The latest CDC study is actually the third in a series of CDC papers based on an ongoing series of surveys that the federal government conducts looking specifically at how people react when prescription drugs get expensive. For this installment, CDC researchers Robin Cohen and Amy Cha focused exclusively on adults with diabetes, breaking down the results by age and insurance coverage.

Not surprisingly, the uninsured group was most likely to skip medications (including but not limited to insulin and other diabetes therapies). Among non-elderly adults with no health coverage, 35.7% reported not filling a prescription because they didn’t have the money.

But it is not like they were the only ones making such choices. Among non-elderly adults, 14% with private insurance and 17.8% with Medicaid said they, too, were declining to fill prescriptions because of cost.

In other words, people without insurance are struggling to pay for their medications, but so are some people who have insurance.

The new paper doesn’t explain why this is happening. But the answer is no great mystery.

Prescription medications in the U.S. are more expensive — frequently a lot pricier than in other countries. People without insurance can’t afford them, while even those with coverage frequently owe so much in out-of-pocket costs in the form of copays and deductibles, that they can’t pay for their drugs, either.

With insulin specifically, the problem has become especially acute, if a bit complicated. The average price of an insulin prescription basically doubled between 2012 and 2016, according to the Health Care Cost Institute.

The Affordable Care Act has mitigated these problems for millions of Americans, by reducing the number of people without health insurance to historic lows. Access to care has generally improved, researchers have found, especially for those who ended up with insurance through Medicaid.

But high out-of-pocket costs are increasingly a reality for Americans with private insurance, whether it’s employer coverage or policies that people buy on their own, including through HealthCare.gov. And that is to say nothing of the 28 million people who remain uninsured.

How Government Could Make A Difference

That helps explain why, even as Democrats are preoccupied defending “Obamacare” from GOP efforts at repeal, they are also talking about next steps for making health care more affordable to diabetics ― and everybody else.

One path forward is to have the government get more involved in the pricing of prescription drugs. Every other developed country in the world does this in one form or another.

Among the proposals now under discussion include tying the price of U.S. drugs to what other governments pay, or simply having the U.S. government negotiate directly with drugmakers over prices ― with the possibility, perhaps, of using “march-in rights” to break patent protections when drugmakers demand high prices for pharmaceuticals developed with federal funding.

Exactly how far government should go, and whether innovation might suffer, remains a subject of debate among experts. But some of the Democrats’ ideas have attracted bipartisan interest.

The Trump administration has floated the idea of using a foreign price index to determine what Medicare pays for some drugs, while negotiating with House Democrats over a possible compromise — although the chances of a deal, let alone a promising one, seem slim.

Another path forward is to work on the insurance side to make sure more people have the kind of coverage that lets them get drugs for diabetes, or any other serious condition, without worrying about such big out-of-pocket costs.

The most ambitious reform plans that Democrats and their allies have floated, including “Medicare for All,” would not only give everybody coverage. They would reduce or effectively eliminate copays and deductibles.

To be clear, these ideas for knocking down drug prices and expanding insurance coverage are not mutually exclusive. Most of the universal coverage and quasi-universal coverage plans that Democrats have floated would give the federal government at least some power over pharmaceutical prices.

This is why the pharmaceutical industry is among the groups fighting these reforms. And that resistance makes a big difference.

There’s no shortage of well-crafted ideas for reducing the price of drugs and making sure people have insurance with enough coverage to pay for them. But turning any of these ideas into policy would require defeating the power of health care lobbyists, winning over or overcoming conservatives, and convincing voters that the change would be worthwhile.

One reason that task is so daunting is the fear, stoked by industry, that reforms will lead to rationing. Wednesday’s report is yet another reminder that rationing in the U.S. is already a reality for millions.

Have you or someone you loved skipped an insulin shot or been forced to ration your insulin because of the high cost of the drug? We want to hear your story. Send us an email.