May 25, 2009

Your Advocates Should Vary

When I say Your Diabetes May Vary I mean of course it will. The only constant with diabetes is nothing is constant. Well almost nothing.

I find it fascinating that the Professional Diabetes Advocacy organizations are remarkably constant. From the emails I receive from them it appears that diabetes to them is one thing and on thing only - Stem Cells.

Both ADA and JDRF fill my in box with emails urging Stem Cell Advocacy. They want me to understand, as the ADA put it that, “It is critical for NIH to hear from as many members of the public as possible letting both the Administration and Congress know that diabetes advocates strongly support the expansion of stem cell research.” Their bolding, not mine.

Here is the deal. I personally am in favor of stem cell research. I am Christian too. I don’t see a conflict between those two. Others do and I try to be as respectful of their convictions as I would want them to be of mine. For me being respectful while differing is part of that “Do unto other…” bit Christianity teaches.

Where the respect starts to break down is with the image of individual diabetes advocates that these organizations project by their focus on stem cell advocacy. I don’t like the idea that type 1 advocacy is de facto stem cell advocacy. As I see it, there are a number of challenges in a family living with type 1. Many if not most are more pressing day to day than stem cells.

I want to be seen as an advocate for the totality of type 1's challenges and not be defined, by others, to a single issue around diabetes, even if it is one of the many I support. I think it would be ideal if those Professional Diabetes Associations would equally reflect the variety of challenges diabetes puts in our lives.

So here are some random thought on where they can do that.

School problems are a day to day reality for many families of children with diabetes. When the schools relationship goes bad, “Critical” is an understatement of its importance. If little Johnny is facing issues with his diabetes care at school, nobody at home gives a hoot about stem cells.

Crystal Jackson at ADA is the National Queen of Diabetes at School issues. After meeting her at Friends for Life a few years ago, I honestly feel an upgrade to Empress of the Universe is in order. Wouldn’t it be great if ADA emailed as much about how to advocate for support safe schools and with the same urgency, polish and organizational attention that stem cell advocacy gets?

Our friends at JDRF invest huge money, as in tens of millions, with for profit companies, trying to move research from the laboratory to peoples lives. They call the program Industry Discovery and Development Partnerships or IDDP. They have a section of their web page about IDDP but it isn’t always kept up to date. I have made a number of passes at learning and sharing more about the program and how it is doing.

In my experience, JDRF shares little about IDDP deals beyond an initial press release. Once I called the PR person whose name was on a particular press release. I wanted to know if a big pharma acquisition of rights of to a process JDRF had an IDDP 'partnership' deal on, triggered a repayment to JDRF of IDDP funds.

‘Good question,’ the PR person said, ‘I don’t know. Can I get back to you?’

The return call never happened. What ever the outcome in that case (and I would think it could it be a success story to share) JDRF certainly doesn't feel the need to share about IDDP like they do with stem cell lobbying.

JDRF is acting as an investment banker / venture capitalist in the diabetes space. I am OK with that. I think those of us who walk would see investing like this, in trials of discoveries, as the JDRF mission.

Sadly that investment banker roll seems to include the lack of transparency that the financial industry is now infamous for. The message apparently is, “Trust us - there are smart real people working on this.” That sounds a lot like Congress’s rational for not regulating derivatives in the close of the ‘90s to me - we all know how well that turned out. Maybe a little more being open with details about IDDP along with the stem cell emails would help all of us see how JDRF gets that type 1 diabetes isn’t a Johnny one note deal. At least it would be something new to read.

Care to step up to a mundane but real every day issue Professional Diabetes Advocates? A number of families with diabetes are concerned that mail order houses (required by insurance) like CVS/Caremark handle insulin in a manner that appears to us to be outside the FDA approved labeling. Specifically that they ship it warm. Want to help insure insulin is shipped cool?

It is not sexy at all. Not taking sides in the big political picture. It's just our insulin - in a hot delivery truck. Don't worry Professional Diabetes Advocates I won't be surprised if it is not your priority. You’re probably working on another critical stem cell email - looking forward to it, honest.

Your Diabetes May Vary. So should your Advocates.

1 comment :

  1. I agree completely and I too am stuggling with CVS/Caremark's insulin mail order policy. Thank you so much for mentioning it!