A few weeks ago two mothers of children with type 1 diabetes, started a petition asking the heads of ADA, NIH, and IDF to change the names of type 1 and type 2 diabetes.
Seeing the level of depth in the arguments in the petition, I know that a lot of time and energy went into it, so I really respect it. But personally, I do not agree with it, with all due respect to Jamie and Jeanette (who started it) and to the people that have supported it.
Our friend Amy Tenderich made some excellent points on a DiabetesMine post yesterday, which we highly recommend you read. She presents both sides of the debate in a balanced way and stated her position: “I just don’t see the value of investing our efforts, time and money (yes, renaming incurs costs) in creating descriptive, scientific names for a cause we’re trying to make easier for the public to embrace, rather than more difficult.”
I agree with Amy and I also don’t believe this effort (if successful) will foster a harmonious relationship between the type 1 and type 2 diabetes communities. If anything it would open up a deeper divide.
Increasingly, the science is showing us MORE and MORE genetic elements that connect to type 2 diabetes and its risk factors. More people with type 2 diabetes evolve from taking oral meds (plus diet and exercise) to being on insulin. As they do, their lives with diabetes and the challenges they live with become more similar to the ones faced by those with type 1 diabetes and LADA.
I don’t like to criticize an idea without offering an alternative. The alternative I propose is that we look at the successful experiences of the past 30 years, from the HIV/AIDS and Breast Cancer communities, to see what they have done that has resulted in these diseases getting 72 times and 60 times more biomedical research funding than diabetes (both types combined).
Source: The Fair Foundation
Back in the 80’s, people who were HIV/AIDS positive and negative joined together, because the stigma was affecting all of them. I recommend that everyone touched by diabetes watches the documentary “How To Survive a Plague“, so we can all get a sense of the unique challenges that this community faced and how they overcame them.
You may say: “HIV/AIDS is so different from diabetes. Diabetes is not contagious. There’s no point in comparing ourselves.” I would argue that a majority of people with diabetes live in the DIABETES CLOSET, and because of this, WE as a diabetes community, are in the DIABETES CAVE… we’re not being seeing enough, all types of diabetes are not getting enough exposure, visibility, and deserved attention.
So, instead of focusing on changing names, let’s unite, learn the lessons from the other communities that have earned the level of visibility that they have today, and turn diabetes from a cause to a movement.
I hope you will join this invitation to do justice to all of us, and see diabetes receive the level of financial support and awareness it needs and deserves. It won’t happen if we don’t join and come out of this cave together! I want to leave you with a video we did back in 2009, inviting all people touched by diabetes to learn from each other and find common ground.
— Manny Hernandez, President of Diabetes Hands Foundation (living with LADA since 2002)
Photo credit: Neils Photography