Will Type 1 Diabetes be Recognized as an Extreme Financial Burden?

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Yesterday, insulin manufacturer, Novo Nordisk published the following press release: Novo Nordisk asks: When will diabetes be recognized as a global health threat? Undeniably, most all third world and developing nations cannot financially sustain adequate diabetes care or choose not to.  I wrote about it here, The Global Burden: Dying before Diagnosis. It’s also no surprise that the bankrupt US Healthcare System also struggles to cover costs for diabetes care, but diabetes in terms of burden is discussed broadly (25.8 total diabetes population at a cost of $174 US billion, (American Diabetes Association Statistics) and is most always concerned with the Type 2 population for obvious reasons. 

Type 2 diabetes accounts for anywhere from 90-95% of all cases in the US, and the current T1 population figure of 5-10% is used loosely in most nations across the globe, except in Asia (In Asia the T1 population is growing but still stands at about 1-2%, often less). Although the US media is in a daily uproar over the cost of diabetes with reports on the cost of preventing Type 2 (T2) pre-diabetes, obesity (also includes pre-diabetes, T2) and finally care and complications of diagnosed and undiagnosed T2 diabetes (ADA Press Release, 23 March 2011), there is little mention ever of the cost of Type 1 diabetes (T1) on it’s own.

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A judge looked this inmate straight in the eyes and said something that left the entire courtroom in tears:

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A judge looked this inmate straight in the eyes and said something that left the entire courtroom in tears:

I would pose a different, more important question:

When will Type 1 diabetes be recognized as both a serious disease and an exteme financial burden?

While this post could easily be a political diatribe against the clustering together of both types of diabetes where discussing the onset of the autoimmune disease T1 (treatable, but no cure) versus metabolic disorder (treatable and often cured) – it will not be. What is important to realize is that while the US and other countries have a substantial financial burden attributed to diabetes (all types), the real truth is that the cost of T1 diabetes is not adequately accounted for when discussing national healthcare costs.

What also isn’t discussed is the burden of the cost of T1 for the patient or patient’s family (lifelong chronic illness averaged over a lifespan where Type 1 is found to be most often diagnosed in children aged 10-19). The difference in costs between the two patient populations is staggering. If Type 1 advocates want to distinguish type from type and change the amount of attention and financial assistance Type 1 patients receive, why aren’t they (we) focused on real total costs for all Type 1 patients.  It’s a very good question.

In order to clarify the issue, it helps to look at one under-utilized research paper published last year, (Tao B, Pietropaolo M, Atkinson M, Schatz D, Taylor D (2010) Estimating the Cost of Type 1 Diabetes in the U.S.: A Propensity Score Matching Method. PLoS ONE 5(7): e11501. doi:10.1371/journal.pone.0011501)  The authors of this paper sought to examine the often overlooked costs of Type 1 diabetes, and to compare their findings to what has been reported in current literature. In conclusion the researchers fond that:

Over their lifetime, a patient with T1D incurs substantial medical and indirect costs as a result of their disease, understanding these costs is a crucial component of understanding the full impact of the disease.

One interesting (and disappointing) question to ask is why this particular area is not a critical issue for major advocacy organizations? I could not find one T1 total patient cost assessment study underwritten by any major type US advocacy organization focused on diabetes. (I am not including cost analysis studies of therapeutic or technological tools). Why?  Additionally, the authors of this paper use 1.1 million (6.5 percent of the total diabetes population in the US) as the most valid current estimate for total T1 population, even taking into account reported increases.  They also find the Juvenile Diabetes Research Foundation (JDRF) 3 million estimate on its website, to be too high.  My question has very little to do with JDRF politics, instead I ask this – why is there a discrepancy?  Shouldn’t at the very least, our advocates know our population numbers by no less than an error margin of 100,000?

The paper also states unsurprisingly,

The calculation of lifetime costs of T1D, presented here for the first time, is particularly relevant for a chronic, childhood disease such as T1D, where costs are incurred over a long lifetime. [...] For the current 1.1 million T1D patients, the present value of their expected lifetime medical and indirect costs is $133.7 billion (97.0 billion to 170.4 billion) and $289.2 (211.7 billion to 366.7 billion), respectively.

I am going to repeat the total financial cost burden for diabetes reported by the American Diabetes Association:

$174 US billion divided by 25.8 million total diabetes population (2011 figures)


Lifetime costs for T1s:

$423 billion total US divided by 1.1 million patients (2005)


(If I use JDRF’s 3 million, $141,000)

My methodology is imperfect, but it makes a point.  Having been a Type 1 patient for the past 36 years, the estimated lifetime cost per patient seems a little low in either case, but it is an average of patients with zero complications and other patients who suffer severe hospitalizations or complications.

A lifetime of Type 1 diabetes without a cure is a lifetime of financial burden and worry.  If medical evidence of the severity of Type 1 doesn’t warrant change, doesn’t this?