Wednesday, February 4, 2015

What We Must Not Say

Today I read about Sanofi's Diabetes Advocacy Summit.  The blogger I read was frustrated at the lack of progress.  The commenters voiced their frustrations, as well.  Yet, between the lines are the reasons for the lack of progress.  Sniff, and you can smell the bullshit we all accept.

Maybe it's like the smell of the manure wafting from the farms north of me.  Living amidst it, the farmer doesn't notice the smell.

There are things we don't question.  Things it is heresy to question.

The blogger is tired of hearing that we need to be more unified.  Yet the unification I too often see is an Us vs Them mentality, Type 1 vs Type 2.  An educated white woman worries about limited resources without questioning the idea behind it: that some are more deserving than others.  That if one group gets what they need, another group must do without.  Yet, I wonder how often she has been denied access to insulin.  Despite whatever connection she may have to a prestigious university, she seems ignorant that many with Type 2 also make no insulin while requiring even larger amounts to keep their blood sugar in range.  Shouldn't we be working toward enough insulin for all those who no longer make enough?

If we want the public to be better educated about diabetes, those who speak out need to be more knowledgeable.  Too many assume that diabetes, especially Type 2, is a lifestyle disease, easily preventable.  It's not.  Diabetes is an endocrine disorder, the result of a malfunctioning pancreas, that results in high blood sugar. 

I am tired of the stylish spokeswomen for the ADA knowing nothing about diabetes beyond what they heard on Dr. Oz.  Interim CEO Suzanne Berry may have a "strong background in disease-related non-profits" but for her salary she needs to know something beyond how to raise money.  She needs to know how diabetes works.  If she were working for General Motors, wouldn't she need to know something about cars beyond where to insert the key?

The national diabetes data registry sounds promising, especially as it will supposedly include LADA, MODY and GDM as well as Types 1 and 2.  I wonder if they will include the number of patients misdiagnosed each year.  And for those initially misdiagnosed, will the correct diagnosis be entered and counted?  Will fewer doctors assume that the patient must be another non-compliant Type 2 and will more doctors be encouraged to look beyond a patient's age and weight?

Will having more data lead to a shift in how we view diabetes?  Or will those in a position to change things pick and choose what they see?  Will they be able to change or will they keep doing what they do?