When is it “enough” in terms of costs for R&D vs. affordable treatment?

There has been a lot of feedback from the NY times article “Even Small Medical Advances Can Mean Big Jumps in Bills” from the type 1 diabetes community.  Many were outraged by the perceived errors or inconsistencies in the text – particularly with regards to the importance of technology in the management of type 1 diabetes.  In the author’s, Dr. Elizabeth Rosenthal, quest to offer a discussion around rising health care costs in the US and the impact that research and development, as well as profit margins, play into this, she failed to highlight an important fact – that people living with type 1 diabetes want to thrive, not just survive.

As someone thriving thanks in part to the insulin pump I have had for over 10 years, I completely understand the issues at hand.  However, as an advocate for access to insulin around the world, I’m truly disappointed that in all of these discussions around technology  - a major shocking truth is being overlooked: because of these high costs in the US many people are not able to afford the insulin they need.  

One-third of those living with type 1 diabetes in the US are lucky enough to be on the insulin pump therapy. And thanks to technology and advances in care, many of us both on and off the pump who closely manage our diabetes are looking forward to long, productive lives. It’s certainly not an easy road, but there are a lot of lights to lead to the way.

As illustrated in the article and in many of the comments, managing type 1 diabetes in the US is not cheap. Certainly many argue it’s worth the expense for what you get. No one would say that the advancements are not important; but is it fair that because of the treatments afforded to some, many others cannot afford even the insulin they need to survive?

In the article, Dr. Rosenthal states that a vial of analogue insulin in the US costs around $200.  She quotes an email from Dr. Todd Hobbs, Chief Medical Officer of Novo Nordisk, as saying, “The cost to develop these new insulin products has been enormous, and the cost of the insulin to the consumer in developed countries has risen to enable these and future advancements to occur.”  While developments are important for the future, the costs that they create are preventing people from getting the insulin they need today. In the US, discontinuation of insulin therapy is the leading precipitating cause of Diabetic Ketoacidosis explaining 68% of such episodes in people living in an inner city setting. And approximately 1/3 of these reporting lack of financial resources to buy insulin and eking out their insulin supplies.[1] And its not just in the US – some people don’t have any access to insulin – in sub-Saharan Africa a type 1 diabetes diagnosis translates into a current life expectancy as low as one year.[2]

Dr. Rosenthal’s quotes Mr. David Kliff, a financial analyst who is editor of Diabetic Investor, in saying that the profit margin in the US for insulin alone is 70 percent.  Despite this amazing success for pharmaceuticals – people are simply not getting the treatment they need. As Dr. Rosenthal writes,diabetes complication rates from diabetes in the US are generally higher than in other developed countries – even though, according to Ping Zhang, an economist at the Centers for Disease Control and Prevention, the US spends more per patient and per capita treating diabetes than elsewhere.

While there were issues with Dr. Rosenthal’s article, the underlying issue – creating truly affordable care for ALL those living with type 1 diabetes remains.  Over 90 years after the first use of insulin, many are still struggling to survive with type 1 diabetes around the world. We need to come together as a community of people living with type 1 diabetes and ask the difficult questions: When is it “enough” in terms of costs for research and development versus affordable treatment? How do we close the gaps between those who have and don’t have access to treatment? In this current health care climate, how can we ensure that everyone has access to life-saving insulin today?   What needs to be done to ensure everyone living with type 1 diabetes not only survives but thrives?

Molly Lepeska is one of the founders of the 100 Campaign and has been living with type 1 diabetes since 1999. The mission of the 100 Campaign is to ensure that all people living with type 1 diabetes around the world have access to the insulin they need by 2022.

 



[1] Beran D, Yudkin J. Diabetes Care in sub-Saharan Africa. The Lancet. 2006;368(9548):1689-95.

[2] Randall L, Begovic J, Hudson M, Smiley D, Peng L, Pitre N, et al. Recurrent diabetic ketoacidosis in inner-city minority patients: behavioral, socioeconomic, and psychosocial factors. Diabetes Care. 2011;34(9):1891-6. Epub 2011/07/22.