Don’t Shoot The Messenger

Don’t Shoot The Messenger

This past Sunday the New York Times ran an article entitled “Even Small Medical Advances Can Mean Big Jump in Bills”. (http://www.nytimes.com/2014/04/06/health/even-small-medical-advances-can-mean-big-jumps-in-bills.html?smid=fb-share&_r=0) The article chronicled the high cost of managing diabetes and questioned some of the so-called advancements in diabetes care. The basic premise being are patient outcomes improving given all these advancements.

The article created quite the stir in the diabetes community, in particular people who have Type 1 diabetes. Jeff Brewer, CEO of the Juvenile Diabetes Research Foundation (JDRF) took to Facebook yesterday with several posts noting; “On behalf of everyone affected by type 1 diabetes (T1D), JDRF is outraged by the recent article in the New York Time trivializing the benefit of medical advances for people with T1D. Rather than being “high priced gadgets and disposable accouterments” as the article defines them, these lifesaving advances are indeed just that – life saving for individuals with T1D. A recent study documented such advances helped add roughly 15 years of life for those diagnosed with T1D. The New York Times story suggests that some medical advances for T1D that could mean a longer life and better health for some people with T1D are not worth the cost – a premise JDRF completely rejects. It further confuses the issue by including growing combined diabetes healthcare costs and tying these growing costs to inappropriate use of medical advances in type 2 diabetes. JDRF supports continued innovation of new medical advances to further improve the lives of people with T1D and to ultimately cure this disease. Such step-wise advances, big and small, are how we will ultimately create a world without T1D. We need a health care policy that supports innovative research on new advances for people with T1D and one that makes these advances available to every person who needs them.”

To Diabetic Investor the article and corresponding uproar, mostly from the Type 1 community, illustrates the growing disconnect between everyone with diabetes and the organizations that are supposed to represent them. Now before we go any further it’s important to note that JDRF has and continues to do some excellent work for people with diabetes. This is one of the most respected diabetes organizations. However the JDRF, along with American Diabetes Association (ADA), should not be immune to some well-deserved criticism.

As we have noted on several occasions the JDRF has become an organization obsessed with the development of an artificial pancreas, a project which has garnered millions of dollars. A project which according the organization believes will improve the lives of all Type 1 diabetics. While Diabetic Investor has never been against this project we have called into question the hype surrounding this project.  A project which along the way was supposed to deliver better insulin pumps, more accurate glucose sensors and more advanced forms of insulin. While we have seen some improvements in these areas the reality is this quest to develop an artificial pancreas has failed to live up to the hype and one could argue distracted money and man power from other equally worthy projects which would impact a far larger share of the diabetes population.

The question should also be asked where were these organizations when the subject of competitive bidding or NIH funding for diabetes research came up before Congress, two issues which directly impact millions of patients. The honest answer is they were nowhere to be found and as a result competitive bidding became a reality and NIH funding continues to decline. This for a disease which is growing at epidemic rates and is now the 7th leading cause of death. This for a disease state where nearly two-thirds of all patients are not properly controlling their diabetes. We’ve said it before and we’ll say it again; diabetes is not just a global healthcare crisis’ it’s also a global financial crisis.

The harsh reality which both organizations fail to grasp is that diabetes is not a disease limited to patients who follow insulin therapy. That this belief that Type 1 patients are superior or suffer more than Type 2’s is just plain ludicrous. Diabetic Investor has written about this bias before and quite frankly it sickens us. The fact is there are millions of patients who need help and need it yesterday. They need organizations that will stand up for their rights, protect their interests and fight for them with our elected officials. The plain truth is most members of Congress have no clue what it’s like to live with diabetes and they don’t see how they vote on diabetes related issues impacting their reelection.

Perhaps most disturbing of all is that both the JDRF and ADA have become delusional, falsely believing that all these way cool whiz bang devices are actually helping patients more effectively manage their diabetes. That they measure success not by outcomes but by lifestyle enhancements. Yes managing diabetes has become easier these past few years but the technology improvements or drug improvements have not resulted in better overall patient outcomes and to Diabetic Investor that is the only measurement that matters.

Poorly controlled diabetes results in numerous painful and costly complications, many of which could be avoided if patients better managed their diabetes. Alternate site testing, faster test results, “smart” insulin pumps, continuous glucose monitors, smaller lubricated needles, insulin pens, analogue insulin’s…. all of these enhancements to diabetes management have not resulted in overall better patient outcomes. Success in diabetes should not be measured by fancier gadgets, success in diabetes should be measured by how many patients are properly controlling their diabetes.

The JDRF shouldn’t be blaming the New York Times for simply having a different opinion as to whether all this whiz bang way cool fancy technology is actually worth the cost. The JDRF should perhaps learn it’s about time to stop over-promising and under-delivering on their pet project. A project which has failed by all reasonable standards to live up to the extraordinary hype. The JDRF should perhaps realize that there are millions of patients who need help now and not ten years from now. That not all Type 1’s see the artificial pancreas as the answer to their prayers.

To Diabetic Investor this condemnation of the article smacks as the ultimate act of hubris. The last time we looked this is America and there is something called Freedom of the Press and Free Speech. That it’s ok to offer a different opinion. That reasonable people can disagree and that healthy debate can strengthen not distract from improvements to the system. Don’t shoot the messenger folks!