Insulin Rationing Is a Global Problem, But at Its Worst in the United States

A worldwide survey conducted by an international type 1 diabetes (T1D) advocacy non-profit found that rationing of insulin and related supplies was the greatest in the Unites States.

T1International said the online survey of patients with type 1 diabetes was conducted in 90 countries, although the greatest number of patients responding came from the United States. The survey released Tuesday builds on 2016 results, and it covered out-of-pocket (OOP) costs, insulin rationing, rationing of blood glucose testing supplies, degree of financial coverage, and sources of financial support.

The survey was completed by 1425 individuals, with 631, or 44.3%, living in the United States. Of those, nearly three-fourths lived with T1D themselves, while 346 (24.3%) were parents or caregivers and 21 (1.5%) were partners or relatives of patients with T1D.

In total 253 (18%) of all respondents reported having rationed insulin at least once in the previous year. Of US respondents, 162 (25.9%) reported having rationed insulin in the previous year. Excluding US patients, in other high-income countries only 6.5% of patients reported rationing in the previous year.

Rationing of blood glucose testing supplies was more common than insulin rationing; overall, 33.5% rationed supplies in the last year, compared with 55.5% in in low- and middle-income countries and 38.6% in the United States.

A total of 976 (66.6%) respondents said there was no financial coverage whatsoever for their OOP diabetes costs.

Coverage for healthcare costs also varied widely. In the United States, there was a much lower percentage of coverage for all costs (6.5%), while high-income country respondents had a significantly higher percentage of coverage for costs (32.4%).

When asked if “some” of their healthcare costs were covered, 70.3% said “yes” overall, compared with almost 89% for the United States and almost 60% for other high-income countries.

Respondents affirming that they had no coverage totaled 13.1%, broken down by 4.3% for the United States and 7.7% for other high-income countries.

When it comes to financial support other than health insurance, such as government assistance, charitable support, or pharmaceutical patient assistance programs, 66.2% said that they do not receive any kind of support. Government assistance was more common in other high-income countries (30.8%) compared with 5.5% in the United States. Overall, almost 15% reported receiving support from family and friends.

Drug company assistance program support totaled 4% in the United States, 2.6% overall, and less than 2% in all other countries, including low-income countries.

T1International said the results are in line with previous studies. The organization also pointed out that other high-income countries have the ability to negotiate prices, as well as some form of national healthcare system, whereas the United States does not, which may account for the differences.

The price of insulin has been the topic of numerous hearing on Capitol Hill, and some companies have responded by introducing authorized generics or by capping prices.