Diabetes Advocacy Is Underwhelming From The ADA

About three weeks ago I had written about an attempt to help the American Diabetes Association with their less than professional information concerning life insurance for those with diabetes. It remains my contention that if an advocacy group is not going to provide complete, accurate information on a subject that impacts their constituency, they should at least provide active links to other sources for that information.

I was roundly booed by Tom Cullinan who, without knowing what had transpired between myself and the ADA, decided that my email to the ADA was caustic. I received a response from the Associate Director of Policy and Strategic Alliances. He wrote back, “I’m excited that you have written us and I’m hoping we have a chance to work through the issues of the web page. The page was written a while ago and I agree along with others on the site they are not up to date on the issues. We are currently doing a full web redesign and that puts myself and one other here in the position to review all of the insurance pages on the site. Because we do not have an insurance advocacy division at the ADA we put information on these pages that will help individuals become self advocates for coverage if they are having trouble. If you have suggestions please send them to me and we will most certainly entertain the changes.” Seems like a normal response to caustic comments?

So, admitting that the information on life insurance was out of date, he asked for input and asked me to direct that to a different department, which I did. I shared what the state of current diabetes underwriting is and how it remains anything but static (the ADA page had been the same for years). I suggested ways to make the information alive and current without promoting any particular company or agency.

After 3 weeks and no response I emailed the associate director this morning to find out what the status of our discussion was and received this response concerning the rebuilding of the ADA website, “Unfortunately the sites will be static information regardless. I’m exploring ways to ensure it gets updated more frequently, however the option of outsourcing the content is not possible”.

This leaves the person with diabetes still looking to more biased outside sources rather than their self professed advocate for information that is critical to their every day life. Well, I can’t say that I hadn’t been warned that the ADA seems to have its’ own agenda. And my mother did warn me that the world doesn’t revolve around me, so the next best thing is to blog and offer direction to websites that do offer helpful, up to date information on how those with type 1 diabetes and type 2 diabetes can get the best possible life insurance values. And continue to blog and update as the underwriting evolves.

Bottom line. I started to get a sense of what the ADA was worth to the diabetic community when they didn’t even answer my requests for information they might have on mortality statistics for juvenile diabetics. The point was further driven home when, in spite of the fact that they admitted it didn’t appear that I was trying to sell anything, they rather rudely black balled me from their forums where people were asking about how to get life insurance. I predict that in spite of the size of the ADA and their historical position as “the diabetes advocacy group” they will soon be left in their static, dusty place by new groups such as tuDiabetes and DLife.