Thursday, May 2, 2013

HOW TO BE AN ADVOCATE: STEP ONE

I'm not metastatic.  I'm not trying to reinvent the wheel.  I'm not trying to take anything away from anyone.

By the same token, I'm not going to play a game with words.  Or hidden meanings.  Or pretend agendas.

I SHOULD be heading for Washington DC for the Annual NBCC meeting.  I opted out.  The breast cancer community, quite possibly, is the most fragmented community on the planet.  Everyone is pushing their own agenda.  Instead of joining together which would make us a force to be reckoned with, a group of unstoppable advocates, there is lots of posturing, plenty of vying for position.  Who is the alpha dog in the pack?

NBCC has a record of getting things done.  At the AACR meeting, much was said of the breast cancer advocates.  Every big change was in large part due to the tenacity of the breast cancer advocates.  I walked into the world of advocacy where a solid foundation was already established.  I am grateful.  No group has had a more common sense approach than the National Breast Cancer Coalition.  It has always been a rollup your sleeves and prepare to dig in group.  

For now, I have chosen to take a step back.  I blogged about this as recently as this past Monday.  When I received an email on Tuesday to let me know NBCC is planning a social media campaign in honor of mother's day, I knew I wouldn't be participating.  I was asked to share a message about my mom.  Use twitter.  Post it to Facebook.  Put a badge on my blog.

My mom inspires me every single day.  My mom smoothed a path in 1987 so that my cancer treatment in 2006, albeit mostly identical, was still kinder and gentler than the barbaric treatment she endured.  My mom is my hero.  And, she has been written off by the NBCC in their 2013 agenda.  She is metastatic and there is NO PLACE in the NBCC for patients whose disease has already progressed to Stage IV.

I sent a tweet that said:
Just got email. NBCC wants my help w/ campaign? And yet, my mom is not in their priorities for 2013. 

Late yesterday, I saw this reply:

Actually, understanding and preventing metastasis is a significant part of our #1 priority: (the link to the "significant part of #1 priority" was attached)

I replied:

Understand-prevent does not help my mom who was dx'd w/mets in Jan. it helps me. Respectfully disagree. Mets pts not counted.

And I stand by those words.  The only thing I could find in that priority that was remotely specific to metastatic disease was this:

A second Artemis Project on Metastasis will be launched this summer to focus on tumor dormancy.

To be clear, tumor dormancy is extremely important work.  But, there is a difference between understanding why a tumor awakens from dormancy as opposed to somehow getting an already metastasized, active tumor to retreat back to a dormant state.

In simple terms, it's far easier to figure out why the hell you woke up in the middle of the night.  Were you startled by a noise, bad dream, light peeking in.... hell, I've gotten up when the power goes out in the middle of the night because it's too quiet.  Once awakened, not so easy to get back to sleep..... And therein lies the rub.  That sentence with Metastasis, prominently spelled with an upper case M may look great but what is it really saying?  Just because you know why you got up, does this in ANY WAY help you get back to sleep.  Yeah, me either.

So, I stand by my position.  I support Dr. Susan Love Research Foundation and SHE isn't studying mets.  Her primary focus is on understanding why we develop cancer so it can, one day, be prevented.  I support METAvivor whose sole focus is on raising funds to award grants specific for metastatic disease.  It's okay for any organization to be one dimensional.  It is NOT okay for an advocacy organization to leave out a significant portion of their population.... and, at that, the portion that really needs the most support.  When we advocate, we advocate for ALL within our communities.

Ironically, one of the things that NBCC does to near perfection is train effective advocates.  Analyze the evidence, look at the data, speak for the entire community..... it's not about me, it's about bringing an educated patient voice to the table, a voice that represents the community for whom I advocate.  The whole community.

Please, no more carefully crafted words.  It's disingenuous and it's misleading.  If NBCC is supporting metastatic patients, the wording needs to be quick and clear:

Stop deaths in patients whose disease has already metastasized and research for effective treatments for this same group of patients.

I'm a broken record this week.  It's National Cancer Research Month.  It's time to raise the metastatic patients from the bottom rung of the ladder.  I'm not saying everything else should stop or that the lion's share belongs in Stage IV research, I'm just saying they shouldn't be written off as lost causes.

10 comments:

  1. Powerful and Perfect...Thank you for a fantastic post!

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    1. Thanks, Kathleen...

      I don't like to step on toes. I would have left it alone with my prior remarks. I purposely didn't tag my tweet using their twitter handle. I wasn't looking to start a twitter thing. Once they replied to the tweet, I felt compelled to open my mouth. (Gee, no surprise there....)

      I'm tired of hearing "understanding and prevention of metastasis" .... that does not equate to saving the lives of those who are already on the line ...

      There was an interesting debate on Katherine O Brien's blog about this in July of 2011. To tout a "moment of silence" or encouraging and embracing the mets patients to be active participants seems a bit exploitive unless one is doing something to offer DIRECT help to that patient population.

      Rant over... clearly, this one touched a nerve....

      AM

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  2. Replies
    1. Thanks, Idelle.....

      I always appreciate when you weigh in on my rants!

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  3. Very Well said AnneMarie....

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    1. Thanks, Lexie...

      I'm not trying to start a war, I just want to see an organization that says it's focus is ADVOCACY, to focus on advocating in the ways in which they have trained US....

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  4. dear annemarie,

    this is a PERFECT post in which you've managed to spell out and show very clearly NBCC's lack of focus for dying MBC patients.token gestures are indeed disingenuous and misleading, but REAL advocacy is transparent with no hidden agendas. you have shown us that time and time again. no organization that has a good past record for accomplishing whatever they clearly set out to should be excused for such a glaring absence of a whole segment of our BC community. i think of the patients, the people and their families who are fully aware that they have been and continue to be excluded. most are too sick, too overwhelmed with their physical and emotional end of life issues to participate in conferences, and yet, many do - telling their stories and pleading for SOMETHING to be done to save their lives. how can a major advocacy organization simply ignore the urgency in their voices?

    i loved what you said about you mom being your hero. and i know that you are HER hero, just as you are to so many of us who are able to empathize with every MBC person's plight, and feel the hurt and frustration and anger. please know that words cannot fully express the gratitude and admiration for what you are doing to facilitate changes in such a passionate and direct manner.

    much love, XOXOXOXO

    karen, TC

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    1. Karen,

      Your words have soothed my soul. To be quite honest, this was a very difficult post to write. I am conflicted because I have reaped the rewards of their tenacity. I would not have been at the table for the grant review process if not for the efforts of NBCC. I have friends who will be at the meeting. One of them is coming in from South Africa and I know it would have been GRAND to collaborate each of them.

      My mom is my hero and my dad is my moral compass. No one was better at dotting i's and crossing t's than my dad. I have done everything to try to read between the lines and tease out something to hold onto. I WANT to support NBCC. Yet, "stopping deaths by preventing metastasis" doesn't translate to those who are already metastatic. It needs its own research.

      Until there is a change.... this is not proper advocacy... There is a robust discussion going back to July of 2011 which was before I even began this blog. I'm not going to fan flames but it talks about the need to ADVOCATE FOR ALL.....

      Again, THANK you, Karen.. your words mean much...

      xoxox

      AnneMarie

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  5. Perfectly said, AnneMarie! You have the guts to confront injustice with passion. It's so not fair that NBCC is not helping those who are already metastatic. I think about you and your mom a lot and cried when I read that she was your hero.

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  6. I'm speechless. Beautiful and powerful and scary and outstanding. From a person who's high-risk-----thank you.

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