Getting the Ball Rolling
Not only has this not come true, but now we find the opposite is happening-type 1 diabetes is seeing significant increases and type 2 is reaching epidemic proportions!
Many of us are now taking a closer look at where the hold-ups are. Is it possible that wrong turns are siphoning away time and money?
In our September 2000 issue, Joan Hoover galvanized us with this very question in her piece "Diabetes-an Environmental Cause?" (p. 36). She reminded me that when President Kennedy said we were going to the moon, there was a coordinated effort-and we got there! With diabetes, there is no master plan, no coordinated effort. The money seems to chase after the hot idea of the moment. And in every case so far, the "hot" idea peters out, often with no announcement of failure or how many millions were blown. Even the exciting Edmonton Protocol that has "cured" eight people using islet transplants has significant problems-not enough islets and the need for those pesky cancer-causing immunosuppressants.
Joan says in her article, "Does any organization set up for commerce without a business plan? Of course not!"
Have we lost sight of the big picture?
Joan's call for a master plan resonated with our readers. From across the country, readers wrote in seconding her opinion. Brent Hoadley, a 45-year type 1 veteran from Lamont, Florida, wrote to tell us his son-in-law has just been diagnosed as well. "I am mad as hell that his future, his maintenance and chances for a normal life are no better now than mine were in 1955," Brent says.
We took a cue from readers Leah Todd of New Orleans, Louisiana, and Kris Berg, EdD, an Exercise Physiologist at the University of Nebraska at Omaha. Dr Berg suggested we send a copy to the National Institutes of Health. I sent a copy of Joan's article along with the following letter off to the new director of diabetes research at the National Institutes of Health.
Allen M. Spiegel, MD
National Institutes of Health
9000 Rockville Pike
Bethesda, Maryland 20892
Dear Dr. Spiegel,
I am the editor-in-chief of DIABETES HEALTH, a monthly magazine for people who have diabetes and the health professionals who help them care for themselves. We have a circulation of nearly 75,000 well-informed readers.
Several of the current issues which we have pursued-islet-transplant procedures, lower-carb diets and others-have galvanized our readers in the past. They've flooded our "Letters to the Editor" section with indignant points and rebuttals.
I write to you today because a recent article by our Patient Advocate Advisor, Joan Williams Hoover, has caused just such a flurry. In her article entitled, "Diabetes, an Environmental Cause?" which was published in our September 2000 issue, Ms. Hoover posited that until all the work and funds that go into diabetes research are better coordinated, the chances of finding a cure are almost non-existent. She states that some responsible body needs to develop and implement a Master Plan that would define and oversee each subsequent stage of research leading to a cure. At present, research funding tends to follow the current "hot topics" without focusing on the necessary next step toward the goal.
Our reader response to Ms. Hoover's suggestion has been overwhelming, but not in the usual way. For once, all our readers seem to agree. At DIABETES HEALTH, we find ourselves wondering with them who can be entrusted to organize and administer this Master Plan? It needs to be a body with sufficient clout and funds to attract followers, but without impeding vested interests. That's a very tall order.
Certainly strides in technology have been made for those who live with diabetes. But no matter how non-invasive we make blood glucose testing and how often we improve insulin sensitivity in rats, we always fall short of finding a cure. Until we do, thousands of diabetic people will continue to suffer and die from the whole host of complications that diabetes can bring.
Presently NIH has the helm of diabetes research. Yours is the prime influence on the research community. However, you also have the responsibility to the American public which sustains you, to pursue with all due haste their request for a cure for this lethal disease. Make no mistake. A cure is what 16,000,000 diabetic taxpayers want, not fancy new ways to inject insulin. NIH seems such a promising entity to establish this new Master Plan, one can't help but wonder why it has not already done so.
Since you have recently assumed the directorship of NIDDK, I'm sure our readers would be most interested in hearing your views on the subject Ms. Hoover has raised and to which our readers have so positively responded. I have also enclosed our December 2000 issue, so you can observe some of these responses for yourself. If you would like to make a statement or write an article, we would be pleased to publish it. If you prefer, a member of our staff could arrange an interview at a time convenient to you.
Thank you for your consideration. I look forward to hearing from you.
Those of us who have had diabetes for a long time are getting increasingly dissatisfied with the process. We don't want to just wait this out anymore.
So, we are going to join Joan in trying to make sure no stone goes unturned. Please join me in writing to Dr. Spiegel. The more he hears from the diabetes community, the better.
With enough prods, hopefully we will be able to get the ball rolling.
The more we hear from you, the better DIABETES HEALTH will be able to facilitate change. Please send your letters to: DIABETES HEALTH, Letters to the Editor Section, 3715 Balboa St., San Francisco, CA, 94121. Email me your thoughts at firstname.lastname@example.org, or fax me at 800-324-9434.
26 Years with Diabetes