Thursday, August 10, 2006

Anniversaries Not Worth Celebrating

This morning I was scanning some of my fellow blogger's posts and caught Lyrehca's blog "Managing The Sweetness Within" who noted her 29th anniversary with type 1 diabetes on August 8, 2006. It was only then that it occurred to me that I also "celebrated" my 30th anniversary with type 1 diabetes on July 24, 2006 and hadn't even realized it. It was certainly not an anniversary I wanted to celebrate, and truthfully, I really need reminders about the actual date or I would have forgotten long ago.

I happen have a scrapbook I made when I was in the hospital following my diagnosis because I had just returned after spending the summer at my uncle's place near Tacoma, Washington, so I had a calendar of all the different things I did while I was there. This is the only way I was able to identify "D-day" with such great precision. The U.S. had just finished its bicentennial celebration (that occurred on July 4, 1976) and I spent that time at Mount Ranier National Park. That summer, I was 7 years old, and I remember that in spite of generally mild weather in the Pacific Northwest, I developed an unquenchable thirst that no one other than someone with type 1 diabetes can relate to. Of course, all that drinking also meant frequent trips to the restroom. As a result, I remember the flight home to Connecticut -- I had to use the restroom so many times and the "fasten seat belts" sign had become my worst enemy. Anyway, at the time, patients were usually prescribed NPH or Lente insulin as the basal insulin along with Regular or Semilente as the short-acting type. I also had the joy of using the Clinitest urine testing kit, which if I recall correctly, was 5 drops of urine and 10 drops of water plus a tablet that boiled in a test tube until changing colors. Actual blood glucose meters first appeared in the mid-1980's. Ironically, the cost of meters has come down considerably, but the cost of test strips have not, in spite of shifting production to China. The retail price is still approximately $1 per test strip. What does that tell you about the profitability for the diabetes market?

In spite of all that, I have been well cared for, but I do not necessarily agree that the tools available to patients for managing diabetes have really improved life for all of us. For one thing, the demands on patients have increased significantly since the DCCT showed that maintainence of normal blood glucose levels significantly reduced (but did not eliminate) the possibility of complications. However, the tools available to patients for managing their blood glucose levels (which most people do not have to think about) have frankly not kept pace. Its theoretically terrific to do this, but insulin, testing and carb counting plus education is really insufficient. We now know that insulin is just one of several hormones secreted by the beta cells (and c-peptide also plays a role in keeping blood vessels flexible) and all of these things play a role in glucose homeostasis. The introduction of synthetic versions of one of the other hormones, amylin (sold under the brand name Symlin), is a start, but frankly, the continued focus on treating the symptoms of the disease rather than the cause remains medicine's biggest failure. When I attended the ADA Scientific Sessions in Washington in June 2006, I was astonished at the self-congratulations the medical community give themselves in spite of the fact that the statistics suggest they have not done such a great job. They also need to understand what causes autoimmunity rather than simply applying band-aids like glucose management then blaming the patient for "non-compliance" with a difficult regimin that provides no guarantee that complications will be avoided.

I'd like to provide the following quotes which I feel summarizes the current status of diabetes treatment today:

"Genetic engineering of the insulin molecule and new methods of delivery have improved insulin therapy, but in essence, the treatment for Type 1 diabetes has changed little since insulin was discovered."

From the Congressionally-appointed Diabetes Working Group chaired Dr. C. Ronald Kahn, MD, President and Director Joslin Diabetes Center and Professor of Medicine at Harvard Medical School as published in "Conquering Diabetes: A Strategic Plan for the 21st Century," full report from the Congressionally-appointed Diabetes Working Group, 1999", page 27)

"Insulin therapy, via daily injections or a pump, is a poor substitute for the body's exquisitely precise regulation of blood glucose by insulin-producing pancreatic beta cells."

Testimony Statement by Dr. Allen M. Spiegel, M.D. former Director National Institute of Diabetes and Digestive and Kidney Disease, National Institutes of Health, U.S. Department of Health and Human Services on Recent Devlopments in Research on Type 1 Diabetes before the Committee on Homeland Security and Government Affairs on June 21, 2005.

"Knowing what dose of insulin to take was not then, and is not now, a precise science. It is not a simple analog of food, exercise, and insulin; rather it is a complex and seemingly random theory of chaos with a few discernable known variables. I was frustrated by my inability to achieve perfect control, and visits to the doctors that gave me no new strategies or tools, but simply repeated the mantra that diabetes could be controlled simply by being 'compliant' with a prescribed regimen of insulin, blood sugar tests, and diet."

Deb Butterfield, author of "Showdown With Diabetes" from a presentation given at the Japan Society for Pancreas and Islet Transplantation in Tokyo

"The transformation of disease, as exemplified by the case of diabetes, is a valuable and elegant concept that serves to remind us that the tally sheet for medical science must carry a column for debit as well as credit."

From Book Review of "Bittersweet: Diabetes, Insulin, and the Transformation of Illness" by John Christopher Feudtner from the New England Journal of Medicine, November 27, 2003

I think these statements go a long way towards setting the record straight on all of the so-called advances we've seen in diabetes treatment during the past 30 years.

Having said that, I am still hopeful. I did mark the occasion with a submission of a quilt square earlier this summer which I saw displayed on the national mall in Washington, D.C. It is indeed amazing to see all of these together. But unlike my fellow blogger mentioned above, I do not feel like we should resign ourselves to living with diabetes forever. That's not acceptable, and as long as I am able to continue fighting, I will continue fundraising for JDRF. I feel putting my frustration to work in that way is very productive.

9 comments:

Scott K. Johnson said...

A very powerful post with a bunch of very powerful quotes. All very true.

I think that it is great of you to channel that frustration we all share, and I must also add that you really seem to have a gift for cutting through all of the red tape that is thrown about.

Keep up the great work.

Scott said...

Thanks for your input!!

BetterCell said...

just think, in just 20 more years you will be able to wear the "50 year" Diabetes Medal around your neck from Lilly.

Scott said...

I think I'd rather pass on a 50-year medal from Lilly!

Lyrehca said...

Hey Scott-I've been meaning to comment and say thanks for referencing my blog and I completely agree that the tools of diabetes managment are completely behind the times when it comes to keeping sugars within range ALL THE TIME. When I hear people say "oh, she's diabetic but her sugars are high," I often comment that "well, the tools to keep them within range are actually fairly hit or miss."

I also salute your efforts for fundraising and your posts on FDA decisions and other healthcare industry commentary (and often wonder why no one ever seems to comment on your lucid posts).

And I hope you're right that those 50-year medals will be considered quaint antiques by the time 2026-2027 roll around.

Lyrehca said...

One more thing--I just updated my blog, so if you want to link directly to my 29 Years post, the URL is http://thesweetnesswithin.blogspot.com/2006/08/twenty-nine-years.html

Scott said...

Thanks, I've updated my blog with the URL for the 29-year post, and I appreciate your feedback!!

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