How To Change the Name of a Disease?

change aheadI have been reading lately that there is an idea floating around about attempting to change the names of the various disease states that fall under the parameters of diabetes.

When it comes to a movement of this type, I would never be the one to tell anyone to stop something if it’s important enough.  I would never leave the impression that people should not attempt to rally around something that the masses feel is so crucial but I would like to lend a voice on a few suggestions to those trying to rally for change.  From someone who has been at this for a while, has won some and lost some in this battle, and I hope my experiences can help expedite and focus efforts.

1. Do some homework.  In as much as the first rallying cry is to ‘let’s get a petition signed’, I strongly suggest you do some leg work and find out what is exactly needed to change the name of a disease state.  I know I don’t know.  Once this is discovered, you can address the petition, or statement of intent, with a razor-sharp focus on what the exact ask will be.

2. Once you know what is involved, speak to those who will make the call.  Get their opinion on the subject; make them your allies.

3. Because a large group may want something, it does not mean the majority does.  With today’s internet there are free services like Survey Monkey where you can create a simple question about the change you want and obtain a yes or no answer.  Distributing it throughout the social media may get a sample size that is significant.  If 10,000 people answer the survey, and the results are examined, you may get an answer that will guide your next steps.

4.  Create a steering committee of about 5 or 6 who can meet, discuss, and set up a plan.  Do not just ‘get it out there’ to get it out there; plan accordingly

My attempt here is not to dissuade anyone but rather to give a few pointers so a whole lot of energy and work is completed that will have a net zero result.  Know what you are asking,  Know who you are addressing about the issue.  Know how to accomplish changing the issues.

Do not start a petition for ‘starting a petition’ sake—-start a petition that will result in real changes.  First know exactly what is needed before asking others to jump aboard.  I commend you on the effort and wish you all the luck in the world.  No change started without someone saying, “This needs to be changed.”

I am a diabetes dad.


3 replies on “How To Change the Name of a Disease?”

Did a little homework! This article has some good points. It specifically mentions writing letters to medical journals and petitioning medical societies. And if the ball gets rolling, it might be necessary to also convince the NIH, CDC, and maybe the FDA that the name change is a good idea (so they’ll start using it as well). There just doesn’t seem to me to be a specific government agency or process for disease-naming. It just seems like a matter of convincing all the people who write or talk about the illness in question.
Also, I think one would also need to demonstrate through good detective work, in detail, the reasoning behind the proposal. Not to mention having a talent for proposal/petition-writing.

I am a diabetes mom. 🙂

It should be interesting to see if the name change is successful, & if so, how many will also be willing to give up the benefits gained from falling under the umbrella of “diabetes.”

Leave a Reply

Your email address will not be published. Required fields are marked *