Friday, December 13, 2013

ADDITIONAL ADVOCACY PATHS BECKON

I said "more tomorrow" and I'm delivering on my promise.  There was so much swirling around on twitter on Thursday, I'm surprised I remember any of it.

Somehow, I managed to remember the important stuff and each of these stories are important.  And on some level a disgrace, shameful.  They are completely unrelated but they've both managed to make me sit up and pay attention.

The pictures below were in conjunction with a news story.  In the first sentence, it says "Despite....national pleas for more talk about mental health, serious reform efforts are struggling to get attention."  I URGE you to click to the CNN blog.  It's short and it's sobering.  A proposal was being unveiled in Congress.  Mental health reform.

This is what the room looked like when the Representatives took the stage.  No surprise there, I suppose.  After all, until mental illness is viewed as a DISEASE of the brain, the general mentality is that people can just snap out of it.  In fact, I was beyond outraged at a blog written by a doctor suggesting that those complaining with depression and anxiety needed a little perspective.  Send them to a third world country to dig latrines.  I kid you not.  And this woman not only contributes to the very well respected Kevin MD medical blog, she has her own blog which appears to have a spiritual angle to it.  Talk about disingenuous.

I was really angry when I read the Kevin MD post but in the grief of Sandy's death, compounded by the frenzied week of following San Antonio by way of New York, I never got to address that blog by Emily Gibson.  After my experiences earlier this year with my friend and my chance meeting with the director of the National Institute of Mental Health at the Faster Cures meeting, I may turn some of my attention to the area of mental illness advocacy.

I'm not going anywhere, but I may be redividing my time to focus on something about which no one seems to care.  Until tragedy strikes.  I can't sit on the sidelines.  I don't know how or what form this advocacy will take but I just know, this is a patient population that needs a voice.  And I have a voice.  And I'm not afraid to use it when necessary.  That's a stay tuned situation, I'm still working it all out in my own chemo damaged brain.  See, it all ties together.


Eight reporters in total.  Two asked questions. 


On another note, back to San Antonio and breast cancer.  Yesterday, the cancer agency of the World Health Organization issued a report and the findings were abysmal.  I saw this tweet from a doctor, yes a doctor, from the San Antonio Breast Cancer Symposium, where the crowd should be savvy and know the truth.

WONDERFUL statistic: 98% of US women DO NOT die from breast cancer!!!

Yes, that pissed me off.  Royally.  Then, there was another tweet about the mortality rate from breast cancer dropping 20% in the last decade.  I'm not going to hunt that one down.  The only thing I know is that I replied citing the information in Clifton Leaf's book.  I say with earlier diagnoses of cancers that we know will not be problems still being counted in those statistics (and RIGHTFULLY SO since there is still no definitive way to determine whose DCIS should be treated) we must resort to the raw numbers.  Per 100,000 women.  Save me the typing.  Go back to the blog where I explained my rationale after reading Truth In Small Doses.  Bottom line if you don't want to click.  We haven't budged.

I want to know under which rock these people reside?  Death is a problem.  And it's one we can't solve.  Thus, the biggest push is to be truthful.  We need an honest analysis of the metastatic community for starters.

And now, a new problem.  Yesterday, while SABCS was well underway, The WHO report on cancer was released.  The only cancers singled out for their own sub sections?  Breast and cervical.  Globally, breast cancer has seen a "sharp rise" in both incidence and mortality.  San Antonio is a global conference so this would have been a worthy conversation if the report findings were announced even a day or two earlier.

Where we go from here?  I don't know, but there is much on the table and clearly there is still much work to be done.

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4 comments:

  1. The photographs are rather shocking. Mental health is a big deal, even if the world is busy with other news. Wow. The emptiness in that room speaks volumes.

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    1. The emptiness is very sad. I'm not going to get on a soapbox now but I am definitely going to find a way to help in some way.

      xoxo

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  2. AnneMarie, I was shocked as well by the 98% tweet. It's so upsetting, to say the least. One take away from my experience is: Despite the fact that my friends and co-workers were appropriately concerned for me the vast majority believe that you do not die from breast cancer any longer. I can't tell you how often I heard that sentiment. For a doctor to say nearly the same thing is hurtful in some ways and dangerous in many more. Where is the motivation to find a cure when doctors proclaim one is not needed?

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    1. You know I agree with you one million percent. "No one dies of breast cancer anymore" is, in my opinion, absolutely fallout from the pink ribbon. Only the stories of hope are told. For a doctor to send that tweet with such exuberance was troubling. I didn't embellish the caps or the !!! ..... You know I've got your back, Maria... and Catherine's too.

      Sending Love...

      AnneMarie

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