Guest Comment: CDC and DES Outrage

20 May

From DES Daughter and WONDER DRUG screenwriter Caitlin McCarthy:

Did you see the CDC’s zombie update?

I am appalled. The CDC’s DES binder was last updated in 2003. I just got it at the Massachusetts General Hospital DES Symposium yesterday. The info on the CDC’s DES webpage appears to be from 2003, too. The CDC isn’t posting anything current about DES: nothing about the latest breast cancer findings or 3rd generation findings, even though the DES tragedy affected 5-10 million people in the US alone.

Here’s a story the press should cover — why does the CDC waste time writing about make believe zombies, instead of writing updates that could help millions of *real* DES victims?

It’s a sad day when the DES Info blog site run by volunteers has the latest info, and the CDC — a government agency running on tax dollars — does not!

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3 Responses to “Guest Comment: CDC and DES Outrage”

  1. Andrea May 20, 2011 at 5:04 pm #

    I just spent an hour and a half contacting the CDC to try to find out just why this information hasn’t been updated. I was referred to a Director, a Branch Director,”The” Director, and, finally, the Director of the office of Women’s health. Only ONE person who answered the phone knew what DES was, and I had to spell it out for everyone! This is appalling and we must all do our part to make sure this sad situation is corrected, especially in light of the fact that the CDC posted information on how to be prepared if Zobies ring your doorbell! Appalling!!!!

    • Andrea May 21, 2011 at 7:03 pm #

      My suggestion would be that everyone who is concerned spend the time to do what I did. Document your calls; take notes. Perhaps we can collectively get them sent over to the Office of Women’s Health and make someone take ownership of this issue.

      It is also clear that the NIH needs to be contacted; there has been much money spent on DES research but I am unaware of what is going on now. We need a list of the projects currently underay, and the Principal Investigator of each research effort, assuming they exist. People then need to write letters, make phone calls, send email,and keep up the pressure.

      Perhaps this information is readily available through DES Action; any of you who are members should call and ask for it; you support them with your dollars, they need to be accountable to their members.

Trackbacks/Pingbacks

  1. Of Zombies and the CDC « DES Info - May 21, 2011

    […] finding out that Caitlin McCarthy’s CDC Zombie post Frustrated with the […]

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