Saturday, March 26, 2016

Deadline 2020: I am very disappointed

I have never been a big fan of the whole Deadline 2020 (to end breast cancer by January 2020). How can you put a deadline on something like that? Apparently back in 2010 some people decided they were tired of scientists setting the research agenda time line so they decided to create their own deadline. How illogical... how over simplified.

Through my blog reading, I read the latest updates from other bloggers. One of them, Jennie, went to the recent Deadline 2020 people's meeting, which the metastatic breast cancer community calls, Deadby2020, at a high end resort in Napa Valley. I am flabbergasted that they can send a bunch of white healthy people to an expensive resort (that could be held in a Holiday Inn conference room in a cheaper area of the country) to discuss a topic while leaving out important portions of it. (Read Jennie's blog post to get all the details.) Perhaps there should be an investigation into misuse of funds here as well.

One problem is the Deadby2020 people ignore metastatic breast cancer and only focus on prevention, and women, and white women only (if their meeting is anything to go by). This leaves more than 40,000 people dying each year from the disease. And Jennie acted  in the normal fashion of the metastatic breast cancer community and started live tweeting from the meeting. And was cornered and told to stop. This was after she was cornered and told to stop bringing up metastatic breast cancer.

I can't believe how rude they were to her. How selective they were to her. How unconcerned they were about her feelings and sensitivities. I have run many events myself and can understand how one person with questions can appear to alter the focus of a meeting. But if they are too narrowly focused they are not benefiting anyone. It would have been better if they had stopped their agenda and added a session on metastatic breast cancer and what can be done about it.

Also the concept of holding such an event which does not accurately represent the people they are trying to help while excessively spending (rooms start at $540/night), in my opinion, is basically unethical and irresponsible.What were they thinking? Or not thinking at all?

So, if you have dollars to donate, I would like to ask you to not donate to the Deadby2020 people (National Breast Cancer Coalition) and give them elsewhere which might be more inclusive and more representative of the people they are helping..

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