Posted by Robin Harrison on June 30, 1998 at 15:19:36:
Dear Readers,
My plate has been and will continue to be very full for awhile. But you all speak up quite well for yourselves, so this is not a problem! As promised, Al and I will both be addressing the Diabetes Research Working Group (DRWG) on July 9th. I will strive to speak in a manner that optimally addresses our common issues, as I'm sure Al will too.
I agree with other TIF posters who have stated that the NIH only feels beholden to diabetes consumers when pressured to do so by our elected officials. However, speaking up to Philip Gorden and the DRWG *will* put the NIH on notice that we are an observant, informed, and critical diabetes community rather than mindless sheep. (Most of us say "oink" rather than "bah", yes? ;) Conversely, communicating to your member(s) of Congress will let him/her know that, altho we appreciate the small victory that the creation of the DRWG represents, diabetes consumers deserve full-time accountability from the NIH, and more than just a one-shot hearing to keep the funding flowing.
So, what can you do, and what is the most important message to convey? Write those letters- to the DRWG *and* to your elected officials!
It is difficult to sort out what is important to write about with diabetes because there is so much! These are my pet issues, but you may have others. Whatever you do, please remember NOT to cram! Pick one priority topic and cover it fully in ONE page if at all possible. If you have more than one issue to address, it's better to write another letter than to overload your reader before he/she reaches the closing salutation.
1.) Diabetes consumers want accountability in research funding and direction- successful initiatives require clear, concrete, and sensible goals. Results must be periodically reported as well as openly and objectively reviewed.
2.) Informed leaders in the diabetes community-at-large, nominated and selected by their peers, *must* be a fully integrated unit of the diabetes research decision making and priority-setting team at the NIH. A model already exists in the form of the National Cancer Institute's Director's Consumer Liaison Group and can be tailored to meet the needs of diabetes consumers. Another example is the Juvenile Diabetes Foundation's Lay Review Board which functions side-by-side with their Scientific Review Board, for those who have a fair understanding of how JDF does it.
3.) Top research priorities in the view of diabetes consumers are those that have demonstrated the most potential for delivering normal blood sugars in the near term with the least health risk and invasiveness. Behavior modification and bionic pancreas apparatus do not qualify. The Islet Foundation's Diabetes- Cause, Cure, and Future contains a concise and helpful explanation of what most participants here desire to see done with our money in our names.
In writing (especially to your elected representatives), don't assume that he or she will automatically know what you are talking about. Make your main point in your opening paragraph. Write another paragraph or two supporting your point using examples and detailing key information.* In closing your letter, again reword and/or summarize your opening point. Ask to be kept informed of any decisions, actions, or developments regarding your issue. Finally, include your full name and address on your letters, if you desire what you say to receive optimal consideration.
* In limited instances, it might work to include a printed copy of material that describes what concept you are referring to (ie: short press releases, brief informational sheets). For instance, one might wish to tell _whoever_ that funding the 'xyz' campaign is ______ (brilliant, stupid, helpful, a waste). Including a copy of the press release announcing 'xyz' campaign is fine either to inform the reader of the concept, or to support your point that it is _insert adjective_.
Please read on for contact information and details.