No one needs to tell those of us living with diabetes how very expensive it is, even for the majority of us fortunate enough to have insurance coverage.

This happens to be a big season for health insurance in America, as it’s the open enrollment period when most employees need to make choices on coverage options for the upcoming year. The options can be confusing, especially with the increasingly pricey high deductible health plans (HDHPs) that have become an all too familiar norm.

Many of us tend to think that our diabetes brethren in developed countries other than America have it much better than we do on the diabetes costs front. But think again.

A new landmark study published in mid-2019 by the Life for a Child (LFAC) organization based in Australia found that even though some health systems globally are providing insulin and test strips, many aren’t subsidizing the costs as is often believed, and governments across the board are failing to meet the United Nations’ Sustainable Development Goals to ensure healthy lives and promote well-being for citizens of all ages.

So much for the romantic notion that universal health coverage ensures affordable chronic disease care.

Researchers for the study published by LFAC (formerly a program of the International Diabetes Federation before September 2018) examined national service provisions, affordability and availability of insulin and test strips in 37 less-resourced countries and compared that to the situations in 7 higher-income countries (Australia, France, Italy, Japan, UK, Sweden and New Zealand).

They found that: “There is great variation in health system coverage of insulin and test strips in less-resourced countries. Provision is inadequate in all countries studied, and the situation is worse for test strips than for insulin.”

They note that UN humanitarian goals will not be met “until there is a system in place to monitor and ensure that both insulin and test strips are both provided to all who need them, by equitable health systems at affordable prices.”

These needs are not being met despite the fact that “we are living in a time where governments are prioritizing policies that ensure their citizens have access to affordable health care (and) even within less-resourced countries, governments are introducing Universal Health Coverage (UHC) programs aimed at eliminating the financial burden of health care for the population.”

The study was funded by a grant from the Leona M. and Harry B. Helmsley Charitable Trust and can be read in full here.

Not surprisingly, the situation in less-resourced countries was worse. Thirty-four of those countries indicated the availability of Private Health Insurance (PHI) but all described very low enrollment figures. And only five of those PHIs (in Ecuador, Jamaica, Mali, Sudan, and Togo) provide human insulin, at a higher cost than through public health systems. Blood glucose test strips were not provided in any PHIs, the study notes.

In all seven high-income countries, public health systems provide coverage and availability of insulin, at a modest co-pay price. But the study also states that “as income level declined, coverage tended to decrease” — meaning of course that the worst-off citizens have least affordability and access.

It is of course highly frustrating that here at home in the United States — one of the wealthiest countries in the world — access and affordability issues are increasingly hampering diabetes care.

This was underscored by a survey conducted at the American Association of Diabetes Educators (AADE) annual conference back in August. The company Inside Rx (owned by Cigna-Express Scripts) polled 300 certified diabetes educators about prominent challenges they’re seeing, hearing, and experiencing with patients under their care.

Results showed that affordability and access concerns related to diabetes meds and supplies are brought up 12-fold more often than any other management or lifestyle challenges patients grapple with. Yep, that’s a whopping 60% more concern about price-related issues compared to overall health, diet, exercise or other D-management aspects.

That’s not a big surprise, but the data is telling. As is the fact that more than 50% of educators said they spend time searching for discount and savings offers to pass along to their patients, to help cover medications or supplies. About 25% said they call the physician in order to request a change to a more affordable generic medication (not counting insulin, of course!).

The survey also hit on so-called “risk behaviors” that people engage in when desperate — from lifestyle hacks to actually rationing insulin because they can’t afford it.

Nearly two-thirds of educators reported that they see patients several times a week who ration medications in some way — whether it’s taking a lower dose of insulin, cutting their diabetes pills or tablets into smaller pieces, or tweaking other parts of their diabetes management (like carb consumption and meal planning) in order to take less of a particular medication. Another 16% put that number at several times a month. A whopping 78% of educators estimate that more than 1 in 5 of their patients need help with the cost of their meds.

It’s no wonder recent diabetes outcomes data show most PWDs (people with diabetes) aren’t achieving ideal A1C levels or Time in Range (TIR) results, and diabetes complications have been on the rise in recent years — despite all the technological advances we’ve made.

“Diabetes educators and other healthcare providers are in a constant struggle to not just assist their patients with the clinical aspects of living with diabetes, but the vast majority now have accepted the incremental responsibility of helping their patients find affordable options for the medications and insulin they so desperately need,” said Leslie Achter, President of Inside Rx, an organization that offers online medication cost comparisons and savings cards. “And, those people in the direst of straits are those stuck in the middle – the millions of uninsured people who don’t qualify for Medicaid, and yet earn too much to qualify for patient assistance programs.”

While savings cards from groups like Inside Rx can offer some relief, they’re not the answer. We’re anxious to hear from the many diabetes authority organizations out there: what’s being done about it?