UPDATED: Experts worry insulin getting too expensive for many in U.S. and worldwide

Drugmakers have made great strides coming up with new treatments for diabetes as the disease gallops across the globe. But healthcare professionals are concerned that hormone insulin meds, often the key treatment, are getting too costly for many patients, even in the U.S. In developing countries, they say engineered insulin is automatically out of reach of many people while supplies of older, but cheaper, human insulin are becoming scarce.

A study released this week in JAMA said that the cost of hormone insulin rose nearly 200% between 2002 and 2013, Reuters reports. The study parsed spending on insulin among nearly 28,000 diabetes patients over the decade. They found that the average number of milliliters of the drug used by patients taking insulin grew 20%, while the average price of insulin increased 197% to $12.92 per mL, from $4.34, during the study period. Annual spending on insulin by patients grew to $736.09 per patient from $231.48.

Experts say much of the increase has been from the migration of patients to more effective, but more expensive, analog insulin and improvements in drug delivery. The problem is that out-of-pocket expenses for people have grown as well. As a result doctors say some of their patients do not take their meds regularly.

"I can tell you from seeing patients myself that there are many who can't afford their insulin and don't take it or take less of it and they're worse off for it," Dr. Robert Gabbay, chief medical officer of the Joslin Diabetes Center in Boston, told Reuters.

In the world's poorest countries, World Health Organization experts this week warned that as drugmakers focus on the more sophisticated insulin and other diabetes drugs, too many poor people can't get enough of the older cheaper meds, and sometimes can't afford even them, Bloomberg reports.

"Older, cheaper insulins may not be as good, but they may only be 10% worse," said Jonathan Shaw, a diabetes consultant at the Baker IDI Heart & Diabetes Institute in Melbourne. "And if you can afford to get that extra 10 or 20 percent, that's fine. But if you can't, it's a lot better than nothing."

Bloomberg points out that Denmark's Novo Nordisk ($NVO), France's Sanofi ($SNY) and Eli Lilly ($LLY) in the U.S. dominate the world insulin market. Bloomberg Intelligence reckons that global sales of insulin were $23 billion last year, with more than 75% of that stemming from new-gen products. By way of illustrating the market move to insulin analogs, Bloomberg points out that market leader Novo now gets less than 20% of its $9.6 billion in insulin sales from basic human insulins.

A Sanofi spokesperson said in a statement: "Sanofi is committed to continuing to work closely with governments, organizations and academics to address the issue of insulin access for people living with diabetes."

Lilly said in an emailed response that after discounts, the "net price" of Humalog, its most commonly used insulin, increased an average of 1.6% per year from 2010 to 2015. The company also said that it has copay cards and other programs in the U.S. to ensure patients who qualify get its diabetes meds. In low-income countries, it also has a variety of programs to provide medications and educate people about diabetes.

"Affordability is an important factor, but in many cases it is not the dominant barrier that prevents access to care," Lilly said. "In communities where the diabetes health infrastructure is underdeveloped, key barriers include establishing a proper understanding of diabetes, few prevention and treatment options, inability to connect with the health care system, and lack of appropriate training for health care providers. These barriers are common even if low-cost medicines are available."

Novo in an email Friday said it welcomes the WHO reports, adding that it is time for the "global health community to focus on the global diabetes epidemic." It pointed out that its ceiling price for insulin in less developed countries is $0.19 per patient treatment per day and that the realized price is $0.15. In the U.S., it said those covered by insurance have co-pays of about $1 a day and those paying cash can get human insulin for less.

"Over the years, we've heard concerns that Novo Nordisk would discontinue marketing its generic human insulin. There is no such plan--we have made a clear commitment that Novo Nordisk will continue to produce and market human insulin for years to come, and that we will always have a low-cost insulin in our portfolio," Novo's statement said.

WHO and other experts say that a global discussion is needed about how to make diabetes drugs and the blood monitoring equipment diabetics need more affordable and more available. They point to a study that the direct and indirect costs of diabetes worldwide will shave $1.7 trillion in gross domestic product globally from 2011 to 2030. The human and medical costs of untreated diabetes, such as amputations and heart and kidney failure, will also grow.

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