Tuesday, May 6, 2014

Promises Made Are Not Necessarily Promises Kept

Earlier this spring I wrote a blog about the positive impact of social media (http://melanoma-mama.blogspot.com/2014/03/social-media-black-ribbon.html). It was about the American Academy of Dermatology's (AAD) attempts to change the color for melanoma awareness from black to orange in 2013. The outpouring from an angry melanoma community through Facebook and Twitter made them rethink their "orange" party campaign. It was ugly, with dermatologists and their staffs caught in the middle (see photo).


This was being promoted by AAD in 2013
This past spring, as my blog described, a small group from the melanoma community was beckoned to a phone conference (more specifically, a one-way presentation by the AAD). We were told what we so desperately wanted to hear. The AAD made promises about encouraging black (which we take as seriously as the breast cancer community takes their pink!) and supporting our efforts to create awareness by retweeting and sharing our messages. We came away from that "meeting" feeling like we had been heard ... that social media had worked to help us save lives. With all of us working together, we could concentrate on creating awareness instead of creating drama.

After that, there were follow-up emails and phone conversations with our ideas and suggestions ... which as it turns out was a total waste of everyone's time. We were being played. It seems that we were being told just enough to keep us calm and not stir the waters.

And now for an update: Fast forward to May 5, 2014, Melanoma Monday. The melanoma community received the rude awakening that for the AAD, there is no "us." They did not follow through with their promises (yes, you can read that as they lied to us). It is obvious that they are typical big business and only care about the $$$. The melanoma community, on the other hand, is forced to deal with the pain, fear, and destruction of melanoma every hour of every day and wants to create awareness so others do not have to suffer. So we obviously have different agendas.

We complain about the indoor tanning industry and their deceptions, but it seems the AAD is learning from them. I am offended that the AAD is being so disrespectful and insensitive to the melanoma community. I am dumbfounded that they are sending me emails asking me to support THEIR efforts for Melanoma Awareness Month, which they call Skin Cancer Awareness Month, when they seem oblivious to our requests that BLACK be used for melanoma. Now don't get me wrong ... I have nothing against skin cancer or any other cancer, but Melanoma Monday isn't about any of those other cancers. And promoting black for that one day or for even a month shouldn't have taken any effort on their part.

All in all, I am just plain angry! I come from a generation when a person's word was everything. I don't understand or appreciate being lied to or manipulated. And I feel used. I wrote that blog that gave everyone hope for a great new-and-improved melanoma awareness day and month ... and now I am forced to write this one to say "never mind."

So maybe David can't slay Goliath but perhaps he (or me) can just ignore him and do his own thing!



2 comments:

  1. I remember reading about your daughter in Self Magazine - http://www.msnbc.msn.com/id/24415128/ns/health-skin_and_beauty/t/skin-cancer-can-sneak-most-savvy/ - How two different dermatologists misdiagnosed your daughter's melanoma as a benign mole and a simple infection and neither biopsied the tissue. If either dermatologist would have done their job, who knows what would have happened to your daughter. I don't know how you got over being angry at the dermatology industry after that. My own experience has taught me that they're more interested in making money from Botox injections and cosmetic procedures than they are skin cancer.

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    1. You are correct that, unfortunately, many dermatologists (cosmetic dermatologists) are not so skin cancer savvy; however there are also many dermatologists (medical dermatologists) who are. I guess it is up to us to find the right ones since the distinction is usually not clear. Thanks for your comment.

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