TYPE 1 Diabetes on the Rise, Still No Reason for Cause

Is there a type 1 pandemic? Scientists are saying that there is evidence of a global increase, and Dan Hurley, who has just published Diabetes Rising, uses this as one of the fundamental rationales for writing his book. Even though there is a pandemic for Type 2 diabetes (and for those of you who haven’t realized this, maybe it’s time you stopped watching the E! Network and tuned into the news), I wonder if a Type 1 pandemic is emerging – has Type 1 diabetes begun to affect a large proportion of the population over a wide geographic area? If scientific data has found this to be the case then who am I to disagree? However, I would also say that the availability of data has increased over the past 30-40 years, and I wonder if this might play a significant part in the increase.

In recent interviews, Mr. Hurley talks about the time in 1975 when he was diagnosed in a small town in Wisconsin (Beloit – population of 35000) where NO ONE had the disease and he had never heard of it. Now three people in his neighborhood have it (Metropolitan area of NYC, I imagine). Surely the scientists are right, Type 1 diabetes is increasing, and it has begun to affect children at an earlier age. However, I would also argue that there has been another fundamental change in our world over the past thirty years! The internet! Communication has fundamentally changed. We have access to private and public, academic, business, and government networks of either a local or global scope and they to us if we allow them! The Internet has created access to linked communities via web sites, blogging, web feeds, instant messaging, internet forums, and social networking sites. Data retrieval has been more than enhanced – don’t you think?  While this cannot explain the 3% increase, I think it does constitute a part of the change in data.

Like Mr. Hurley, I was diagnosed in a similar time (1974), when I was in primary school. The Palm Beach County (Florida) Diabetes clinic where I received my insulin regimen training was teeming with young adults and dozens of the infirmed and elderly—all diabetic. The emergency room nurse who watched over me had a son who had been type 1, but he had died at age 14. (For emotional reasons she was removed from my case.) I immediately caught on that type 1 diabetes was very serious business, but I never considered my diagnosis rare in the most literal sense of the word, although I would have been wrong. (In the US, the Rare Disease Act of 2002 defines rare disease strictly according to prevalence, as "any disease or condition that affects less than 200,000 persons in the United States,"[2] or about 1 in 1,500 people.) Today, it is very unlikely that we will read about type 1 deaths because of advances in technology and newer better insulins. People with type 1 diabetes are living longer, healthier lives, although there are exceptions to the rule - such as the Casey Johnson tragedy.

The truth is I always felt that my Type 1 diabetes was outnumbered by other more serious diseases, and completely over-shadowed by Type 2 diabetes. (Aids in the 70’s and 80’s, Breast Cancer in the 90’s, global Type 2 epidemic in the noughties). In fact, a type 1 pandemic would have been good news! More cases, more attention = more funding! In the late 1970’s I found I was always re-defining diabetes for friends, relatives and acquaintances. I was in the type 1 club, and no one ever really understood the difference between type 1 diabetes and type 2 diabetes. Type 1 diabetes was just not newsworthy, affecting 1% of the population, and it wasn’t fatal, at least most of the time. I don’t think this has changed all that much.

Even so, I am thankful for Dan Hurley’s efforts--although I don’t know if the subject warranted another book. And even though I haven’t read it, I will probably order it as a compendium of all the studies that have been done in the 20th – 21st century. I am thankful for Dan Hurley's work for another reason too --  his subject matter has re-focused my attention (and hopefully the media's) on one staggering fact. It has been nearly 100 years since Banting and Best discovered how to extract pure insulin, and in that course of time, the pathogenesis of type 1 diabetes remains a mystery. Over a billion research dollars haven’t provided any answers. What is the cause of Type 1 diabetes? We still don’t know.

Funny thing is, many of the theories haven’t changed all that much either. The diagram below reflects all the modern theoretical hypotheses:

I remember the doctor telling my parents and me in 1974, that the cause of my diabetes was unknown, but that it was a case of my body turning against itself and wiping out all the insulin producing islets in my pancreas.  He also mentioned that cow's milk could be the culprit, but research was still working on proving different theories. So how much have we learned since then? Not a whole lot, I believe.

There is another body of work that I would encourage everyone to read, entitled, Thirty Years of Investigating the Autoimmune Basis for Type 1 Diabetes / Why Can’t We Prevent or Reverse This Disease? In his lecture, Dr. Mark Atkinson, a pathologist in Florida, argues that we have failed to find the cause of diabetes, because we haven't established the cornerstones:

"The question most often asked of me by individuals with type 1 diabetes or their family members is “when” are we going to prevent or reverse the disease. The second most common question is “why.” Why, despite 30 years of understanding an autoimmune nature of this disease, haven’t we been able to prevent it? As all good puzzle solvers know, a key step involves finding the corner pieces. In our effort to solve the puzzle as quickly as possible, I believe we were unsuccessful in finding the four corners."

Atkinson's four corners are:
1. What is Type 1 Diabetes?  What are the causes? Genetic versus environment?
2. What is the natural history of the disease?  There is no consensus.
3. How do we predict it? We have not found a way to practically, ethically and economically predict diabetes.(This has changed since this article was written in 2005, but just)
4. What have we learned in the lab so far? We have overvalued and overstated the importance of studying mice in relation to man (prevention of diabetes in mice easy vs.
prevention of diabetes in man difficult.

Dr. Atkinson ends his Lilly Award presentation, by stating what he thinks will provide the greatest success, that is to find the "it,"  better define the natural history of type 1 diabetes, use animal models wisely, and to make disease prediction/prevention practical and cost effective."  He also belives in the regenerative capacity of the pancreatic β-cells, and I believe that regeneration research is an area of much focus today.  But is Dr. Atkinson's summary that I feel is the most honest and compelling, perhaps put so directly to all the people who live with Type 1 diabetes:

“technological advances in methods of insulin delivery and glucose monitoring that seemed like pipe dreams just a few years ago are now entering the marketplace. It is time to be optimistic on a number of fronts, at least for those who will likely have rapid access to such treatments. Indeed, we should not forget that much of what I have spoken about today is a mere fable, an unrealistic goal for many in the world with type 1 diabetes—patients who will, given the fate of the geographic location for which they happened to be born, will die for lack of insulin to treat their disease. … the hope they hold would be for free access to the life-saving agent brought to us over 80 years ago (insulin) for which we complain and try to break ourselves free from. For them, and us, I trust we find hope for a “cure” come to fruition.”