Tuesday, March 26, 2013


I'm going with:  It's Me.  I lost the memo on "why I should not be outraged" about those studies in India that I blogged about on February 25th.

For quick review, simple bullet points:
  • There are two studies being conducted on women in India.  They are ongoing.
  • One was funded by the NCI (National Cancer Institute).
  • One was funded by the Gates Foundation. (Bill, Melinda, Microsoft)
  • The tests are about cervical cancer, highly detectable, highly treatable, highly curable.
  • In fact, in THIS country, cervical cancer is treated with such non-chalance, we tried to lose the word cancer unless it gets REALLY BAD.  In other words, a cancer success story.  Want proof? Here was my take on the NY Times article. (FYI-This is the second time I've posted that link in a very short time.)
  • Between those two studies, funded by US dollars, almost a quarter of a million poverty stricken women in India SHOWED UP.
  • They showed up to participate in research studies.  I'm pretty sure that would indicate they wanted some sort of treatment.  That's my unscientific observation.
  • The endpoint of the studies:  Death.  
  • They've only reported outcomes through some time in 2009.  Three plus years between these reported outcomes have passed.
  • As of 2009.....  NCI study-15 women died; Gates study-64 women died.  How many more are dead today?
  • The ethics of the study have been questioned.  When the "control arm" is death more than the ethics should be examined.  Really, the brains of everyone involved in approving the funding of this sort of research should be questioned.  
  • The issue of "informed consent" is murky.  When one affixes a thumbprint on a consent form, if a question arises, how will the woman read the consent form?  Quite simply, she can't and she won't.  
  • PLUS, the informed consent form that was submitted with the grant application had information about PAP screening.  Somehow, the consent form that got shipped to India?  Omitted.  In error. As IF it would have made a difference anyway.  See prior point re: reading.
  • I'm sure I'm missing many more things that have made me completely IRATE over this but NONE and I do mean NONE has angered me more than the nonchalance with which this has been handled.  The story is still NOWHERE.  And I mean NOWHERE.  The only place it can be found is in AZCentral.com where Bob Ortega did a superb job of digging for information.
I'm feeling a bit like Erin Brockovich except no one is hiding anything.  It's all there for the public to read.  The trials are listed on clinicaltrials.gov website and they are both following standard study protocols.  I have spoken to someone who is going to see about getting this information into the media pipeline.

Last week, I saw this on twitter.....  and it reinforced my determination....

I didn't see that tweet for two days. I was thankful I wasn't shouting into blank air. And I made sure I let "Zen Motherhood" who lives in Mumbai know that I would not drop this until it was given proper attention.
Today is the day to engage my big mouth. What's with the silence? My jaded mind tells me it's not right to mess with revered names like Gates, Bill, Melinda. My jaded mind tells me that's the issue. I am not calling the integrity of the entire foundation into question. I'm asking about one study and it's completely ignored.  On National Women's Day, I sent plenty of tweets and included Gates Foundation in those tweets.  Melinda Gates sent a tweet and I replied in a way that everyone who follows her would see my question.  I wanted to know who is watching over the women in India.

Apparently, Mrs. Gates is watching some of the women in India.  Despite the tagline on her twitter background, which says All Lives Have Equal Value, why didn't she stop in on the clinic where some lives were expendable, at the hands of research funded by a foundation that she co-chairs and bears her name.  Sorry.  I am calling this one like I see it.  She's a woman, this is disingenuous and no one is saying anything.  No questions asked.  No explanations offered.

Here was the feel good story posted on February 28th on the foundation's blog, Impatient Optimists. "Empowering Women and Girls Through Access to Contraceptives" .  Like I said, disingenuous.  All Lives Have Equal Value and in the same country where women were used as lab rats, and died, the photo op is about family planning??  I'm fairly sure someone at the Foundation must watch the media and Bob Ortega's expose was already published.  My original blog, for whatever THAT is worth, was also already published.  The visit was three days later.  

In light of what DID make all the news stories yesterday, I might be inclined to laugh at the irony but I can't laugh when the lives of women were deliberately sacrificed.  Yes, DELIBERATELY.

What was all abuzz yesterday?  On that very same blog:  Reinventing the Condom.  The gig?  The Gates Foundation will be awarding a grant in the amount of 100K to the person whose idea seems most feasible.  Who can build the best condom?  Of course, that story hit every major news feed, many of the online magazines and I stopped looking when Google returned 873,000 results in 0.26 seconds.  On condoms.  On those women, only Bob Ortega and a couple of blogs.

By AnneMarie Ciccarella

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  1. dear annemarie,

    so glad zenmotherhood tweeted; just goes to show how powerful your post about the women(lab rats, indeed) in india. i think of those women, and try to send them messages of hope for their sisters, those who are still living, and say i am so sorry for their needless death. thank you for your determination to breathe new life into a story that has got to be told, investigated further, and screams for some kind of restitution for the victims' families.

    to zenmotherhood - you rock! keep hope alive-you are not alone.

    love, XOXO

    karen, TC

    1. Thank you ... thank you, my dear karen...

      I'm wobbling around lost right now..... I can't wrap my brain around Donna's death. I'm useless, wiped out and going to bed.



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