Extent of Insulin Rationing in the US Is 'Shameful,' Say Experts

Miriam E. Tucker

December 03, 2019

BUSAN, SOUTH KOREA — The practice of insulin rationing because of cost by people with type 1 diabetes is considerably more common in the United States than other high-income countries, and is even higher than some low- and middle-income countries, new data suggest.   

Findings from the latest survey conducted by the nonprofit advocacy organization T1International were presented December 3 here at the International Diabetes Federation Congress 2019 by organization trustee James Elliott, MMSc, of Toronto, Ontario, Canada.

The data were also simultaneously posted on the organization's website.

The 2018 online survey is an update of T1International's 2016 survey. It was disseminated through the organization's website, partner organizations, and social media. The survey questions were developed by people living with type 1 diabetes to ensure they made sense to patients.

A total of 1478 respondents from 90 countries completed the online survey in 2018.

Overall, 18% reported rationing insulin because of cost in the previous year. About 26% of 627 respondents from the United States reported the practice, compared with just 6.5% of 525 respondents from other high-income countries, and 10.9% of 256 respondents from low- and middle-income countries. Rates of rationing blood glucose testing supplies were even higher.   

"The take-home point is that insulin rationing and blood glucose testing rationing is a reality for far more people with diabetes than I think is acknowledged," said Elliott.

"One of the key findings is that many people are actually better off living in lower- and middle-income countries than in the United States, which is quite shameful," Elliott told Medscape Medical News in an interview.

He advised clinicians to ask patients if they're insulin rationing, but to be mindful that "not everyone is going to be upfront. There's a lot of associated stigmas."

Asked to comment, endocrinologist Irl B. Hirsch, MD, noted that the rationing rate reported for the United States in the survey is similar to that found in a recently published study from Yale, as reported by Medscape Medical News.

Hirsch, who is chair of Diabetes Treatment and Teaching at the University of Washington, Seattle, agreed wholeheartedly with Elliott.

"It is shameful and embarrassing sitting here with colleagues from around the world at IDF. It is time for our elected officials [in the United States] to do something instead of simply talking about it," Hirsch said.

Many Have No Coverage, Blood Glucose Test Rationing Also Common

Overall, 66.2% of survey respondents reported having no financial coverage for diabetes expenses, many instead relying on support from family and friends, charities and nonprofit organizations, donations including online programs such as GoFundMe, and/or assistance from government or pharmaceutical company programs.

By region, the proportions reporting no coverage for diabetes supplies were 79.2% in the United States, 54.0% in other high-income countries, and 59.8% in low- and middle-income countries.  

"Many countries still lack any kind of support system to help people with type 1 diabetes survive," Elliott noted.

Also asked to comment, Edward W. Gregg, PhD, a professor in the Department of Epidemiology and Biostatistics at Imperial College, London, UK, said: "It's pretty astounding to me that two thirds of people with type 1 diabetes have no coverage whatsoever for out-of-pocket costs."

"For as much concern as we have [for the US], it's really staggering to think about how it must be in the low- and middle-income countries where having to pay for insulin takes away a large proportion of income," he added. 

Rationing of blood glucose testing was considerably more common than insulin rationing, with 33.5% overall reporting having done so in the last year.

The proportion was higher in the United States and in low- and middle-income countries, at 38.6% and 55.5%, respectively, compared with just 17.2% of high-income countries other than the United States. 

Elliott told Medscape Medical News that the recent World Health Organization's launch of its first-ever insulin prequalification program to expand access to treatment is a "start," and that T1International is pushing to expand that beyond human insulins to also include analogs. 

"It's a tough disease to survive in lower- and middle-income countries. Oftentimes it's a death sentence," Elliott said.

International Diabetes Federation Congress 2019; Abstract #OP-0304. Presented December 3, 2019.

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