Thursday, June 6, 2013


I don't want to be **that person**  .... the one who engages trolls but frankly, this post is more about who I am.  In a sideways fashion, it is responding to the comment I posted yesterday which appeared under my post in February about those women in India.

Yes, apparently this entire week is going to have a running theme.  Tied together, this represents my quasi-knowledge of science and the research process, advocating for others whose medical care might need a little boost by encouraging them to be more engaged patients and mostly, activism.  To steal my friend Jody's term:  ANCHORED activism.

And yes, I take offense with being referred to as an arm-chair activist.  By someone who chooses to remain anonymous in a rather obnoxious comment that doesn't address even one of the concerns I brought forward about the cervical cancer studies in India.  Why should I care about the thoughts of one person who: A-is a coward who won't identify him/herself and more importantly, B-missed the entire point?  Because.  Just because.

My posts about this study are not about the care of the women in other countries, in this case, specifically India.  There is plenty wrong with the treatment of women in many places on the globe.  I support those who are in a position to do more than I am able to do.  Physically.  I have friends on other continents working to see that gender disparities and the disparities that exist because of socio-economic issues are brought to light so that we can narrow and ultimate eliminate the gap.

According the the urban dictionary, an arm chair activist is defined as:

One who sits in their armchair or desk chair and blogs or posts Activists issues on facebook without ever really doing anything about said issues or exercising any form of activism as it would require that person to actually leave the armchair.

Thus my problem.  I am tempted to get quite sarcastic.  I don't use an armchair.  I sit on a sofa.  Or outside to get some fresh air.  If I see something I SAY something.  To whatever extent I can, I DO something.  My life exists far beyond the metaphoric arm chair.  For that matter, I don't simply "post issues on Facebook" either.  I take the time to read, to decipher, to write in my own words, what I believe to be something akin to "a cause."

I choose not to share all of the places where I am actively involved.  I choose not to talk about the advocacy efforts that take me away from the comforts of my air-conditioned home, albeit, generally with my i-something, occasionally in the comfort of my luxury coupe.  I was taught not to brag.  Sharing the things I do for and on behalf of others or discussing every meeting I attend to stay fully informed about the most recent research, frankly, feels too much like bragging.  Those who know me, know I am actively involved.  Those with whom I've worked directly, assisting them with their own projects on other continents know I am actively involved.

In other words, I am neither an arm chair advocate nor a slacktivist.  I am a volunteer doing what I can to make a difference within organizations whose missions align with my beliefs.  That's what we do in a free country.  We choose the organizations we wish to support.  We speak respectfully to those whose beliefs may not align with those of others.  If we are reasonable, oftentimes, we can agree to disagree and hopefully still work for the common good with an understanding there are many different paths available to climb the same mountain.

Which leads me to my views which are, according to "anonymous" baseless, myopic and childish.  (And yes, I AM aware that is not a "real" sentence, although I could make it real by simply changing the first word.  I choose not.  That's my style of writing.)

Let's break those down.

Baseless?  Not so much.

I questioned the endpoint being death because I do understand the way research works.  We don't withhold treatment in control arms where effective treatment exists.  It's unethical.  But, if that is the standard of care in India, even if I COULD wrap my brain around that kind of rationale, we know better.  Other methods might have been employed to compare the effectiveness of training healthcare workers to perform these visual vinegar tests.  If I'm not mistaken, and I might be because I do not proclaim to be a know it all, just a know-enough, it's called comparative effectiveness research.  The ability to provide an unbiased result may be questioned because randomized control studies are still the gold standard but the question here was developing methods to treat women who are dying of a treatable and curable cancer in an impoverished country.

Did we need the study to prove women would die without screening and subsequent treatment?  Didn't think so.  It is already a well established fact.  Thus, the development of a control arm that sacrificed women is a personal affront. Proving what we already know?  A waste of time and money is lousy enough, but death?  Inexcusable if I wish to remain on my moral high horse.  I'm sticking, however, with a solidly developed plan that is followed using proper science.  Set the emotions aside.  Only look at the facts as I've been taught.

Let's take a look.  It would appear from the letter sent to these investigators, there are questions regarding the activity and ongoing required involvement of the IRB (Institutional Review Board also known as the ethical review board).  Among those questions that should be considered by the IRB, "Are the risks to subjects minimized?" and "Are the risks reasonable relative to expected benefits?" and "Are the safeguards in place at the time of the initial approval of the IRB adequate to ensure the safety of subjects as the study progresses?"  No, No and NO.  Death is not an acceptable risk.

That's my take on the baseless nature of my words.

Now... myopic.  To that, I say: REALLY????  REALLLLLY???????

Myopic = shortsighted.  Failing to see the big picture.  Lacking the ability to look in the long term.  Interestingly, this ties directly with baseless.  Upon what foundation was this study constructed.  A very weak foundation indeed which means I'm not the one who is baseless.  In lacking a solid foundation, this study is baseless.  Myopic?  If I am myopic, those who are standing in support of this mess have turned a blind eye to the single most important tenet in medical research involving human beings.  Informed Consent.

And again, I turn to the determinations made by the Office for Human Research Protections.  The very first item in the letter regarding the concerns raised about the ethics of this study states "subjects were not adequately informed of alternative procedures or courses of treatment."  Several sentences later, the letter explains that this very understanding is key so that potential trial participants are able to provide informed consent.  OHRP doesn't mince words or dance around the phrasing.  It's direct.  It's simple.  And, it's not negotiable or subject to the thoughts or beliefs of any one person. There are stringent guidelines regarding informed consent.  They were not followed.

One might argue our informed consent rules and regulations are not effective in other countries and this might require the use of alternative methods.  That is where the IRB can make adjustments, with cause, with well kept notes and with a majority of members voting for the change.  Not one of these things occurred in Tata Memorial Hospital in Mumbai, India.

In law, I believe this concept is referred to as fruit of the poison tree.  At the heart of all research involving human participants is informed consent.  Without providing this consent, participants would be excluded from joining a study.  This study began in 1997.  It was fifteen years before any of this was questioned.  And now that it has been brought to light, someone has the audacity to hurl accusations at me.

I'm childish.  I'm short sighted.  My concerns are baseless.  No, No AND NO.  Just about the only thing that "anonymous" got right in the comment?  Excellent in spelling my name without changing the last vowel or losing a consonant which often does happen.  I would imagine Mr/Ms/Dr Anonymous is quite the master at Wheel of Fortune.

The rest?  Dude.  You are so far off base it's pathetic.


  1. I thought this yesterday, and am glad to say it today - anyone who calls you an 'arm chair activist' clearly doesn't know a thing about you. Not a thing. You give so much, don't bother with this person who hasn't a clue how much you've participated and helped. This guy - who is this person who attacks you and not the issues? He or she is no one. They're as no one as the crumbs that are beneath your sofa cushions.
    They aren’t worth another second of your awesomeness.

    Thank you for being so involved, you help raise my awareness with each post AND I've seen first-hand how much support you bring to people and causes you believe in.

    Take care,

    1. Thank You CATHERINE.... Thank you thank you....

      It's disheartening to be addressed as "You Ms. Ciccarella" for an opening.... But, as you said.... I attacked the design and those who should have been doing better.... Anonymous attacked me personally.... For standing up on behalf of those whose voices were lost...


  2. AnneMarie
    I read what you wrote and here is my 2 cents. You are responding to anonymous.. Those who follow read your blog etc don't require an explanation If someone does not have the decency to post a name. You need to wonder What are they afraid of or hiding. It's much easier to hide behind a mask (anonymity) than to reveal yourself...the rest by them is just silly diatribe..
    No worries...... carry on as you do :)

  3. I object to the anon's suggestion that one needs to go to a certain country/place to see the "real" situation. In the world of activism, it is possible to be effective and active no matter where one plants one's ass (there are too many examples of internet uproars to site here). All it requires is open eyes and minds. There are some people who could travel right into the heart of a situation (in this case India) and still be blind to injustice.


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