I've written about this a number of times. I've expressed dismay, outrage and downright disgust at the whole thing. Women in India were treated like lab rats. They were allowed to die of what is considered a highly curable disease. Cervical cancer.
Back in February of 2013, I wanted to know why the shit hadn't hit the fan. This was the very first time I wrote about the questionable ethics associated with two different studies. The blog post had a similar title about shit hitting fans.
A bunch of things happened between February and September which prompted a few other blog posts. I attempted to outline the whole sordid mess with links to everything I could find in this post. If you aren't familiar with the story, that might be a good place to start. Bearing in mind I have challenges when a story has enough pieces to assemble a decent sized jigsaw puzzle, it may be hard to follow. Stick with the bullet points and you should be okay.
Today, an update.
Dr. Eric Suba deserves a ton of credit for his tenacity. Ditto Bob Ortega for writing about it again and again.
Dr. Suba delivered a keynote less than one month ago at Tuskegee University: "Tuskegee 2.0: US Funded Cervical Cancer Death Rate Measurements in India." The keynote was at a commemoration of the 1997 apology by President Clinton for the shameful Tuskegee Syphilis Study. I'd say that was a pretty big deal. In a Facebook post, Dr. Suba synopsized his talk as follows: "...you can't let people die to show something you already know; that, if you do, you should apologize; and that somewhere between Tuskegee 1.0 and Tuskegee 2.0, greed became good."
Right; Right; and Right. On all counts. And many more.
On April 17th, an article by Dr. Suba was published online, ahead of print in the Indian Journal of Medical Ethics. He discusses the ethical and the scientific concerns behind the studies. There were two. Both were funded with US dollars. The NCI funded one of the studies, The Gates Foundation funded the other and ASCO touted the whole tragic mess as a great success story.
Personally, I think ASCO dropped the ball on this one. Actually, I KNOW ASCO dropped the ball. These studies broke absolutely NO NEW GROUND. We don't need to set up a randomized control trial to provide care within the existing infrastructure in third world countries. We do need to find ways to just get the job done. ASCO turned a researcher using highly suspect methods into a hero.
Women died. Unnecessarily. The count is now 254. The story appeared in today's edition of The Times of India. According to the article, these studies would not have been permitted "in the country of the funding organizations." Damn straight. And each of the studies was in violation of both international and national (Indian) guidelines.
Who's going to be the first to apologize? There are 254 families that deserve far more than an apology. And countless others, too.
ASCO? Bill &/or Melinda Gates? The National Cancer Institute? The US government?
Yes, yes &/or yes, yes and yes.
But I'll start with me. As a citizen of this country and a patient advocate with a big mouth, I would like to apologize to the women of India and to the families of those women.
This should not have happened. Not. Ever. And I'm deeply sorry.
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dear Annemarie,
ReplyDeleteI am so thankful for this post, for the incredible tenacity you've exerted to continue to follow this shameful and sad story of the needless deaths, now tolled at 254 women. the most profound and heart wrenching fact you quoted, "...these studies would not have been permitted "in the country of the funding organizations", leaves me incensed that ASCO could champion a researcher into a hero, and make the statements they made (I recall the video of it's president speaking, but not her name - outraged and pissed me off then and now, even more. and I agree whole heartedly about Dr. Suba and Bob Ortega for never giving up on this whole sad and utterly unethical debacle that TOOK LIVES that could have been saved.
I stand beside you, and offer my deepest apologies to the families of the women in India who have suffered so grievously.
sincerely,
karen
My dear Karen,
ReplyDeleteThank you for sharing my outrage and feeling the need to apologize, too. Your comments are always such a breath of fresh air. I think Dr. Eric Suba and Bob Ortega are truly heroes. And yes, that video is embedded in one of my prior blog posts. Pissed me off, too.
xoxo