Friday, September 14, 2012

ALL VACCINES ARE NOT CREATED EQUAL

I'm about to step into it.  Prepare the tar and feathers.  Get the rope and stake ready and decide who will be the one doing the flogging.  The only thing about which I am certain.  I will be covered in tar, tied to a stake or both.  Me.  Because I can't keep my mouth shut.

There has been much hype about The Pink Vaccine over the past several weeks and I, like many others, am trying to understand why it is so difficult to raise 6M dollars for this vaccine that, according to its promoters, holds much promise. In the scheme of the money in this breast cancer gig, 6M is kind of the equivalent of spitting in the ocean.  Honestly.

So, what seems to be the problem.  First of all, I am NOT a scientist.  I'm not a researcher.  I'm not a clinician.  I'm a woman who was diagnosed with breast cancer and I was born with that skeptic gene.  If something sounds too good, at the VERY least, it requires us... ok ME, to step back and analyze what I'm being told or sold.  Dick Tracy.

I have a couple of questions.

  • If this Pink Vaccine holds such promise based upon its success in the mice models, where are the peer reviewed publications?  There is a difference between a full peer review and having ones work appear in a publication where the articles are peer reviewed prior to print.  The Pink Vaccine appeared in the "Letters" section of a news journal.  To insert the words peer reviewed when discussing the merits of the vaccine seems somewhat disingenuous.  To be fair, the publication where the letter appeared happens to perform a rigorous review of everything they print.  But still.  For me, "peer reviewed" means examined by many and then the findings of both the STUDY and the REVIEWERS are published for all to see.     
  • I read that government funding was denied based upon a technicality in the application.  In other words, the paperwork was faulty.  Was the paperwork corrected, resubmitted and rejected again by a panel awarding grants? I only saw this mentioned briefly.  Now I see that Komen supposedly rejected three grant applications submitted for the Pink Vaccine.  No details.  Just, rejected.  Maybe the science in the grant application wasn't sound?  Maybe the grant request did not fit into the criteria for the award he was seeking?  
  • The fact is that this work was awarded 1.3M dollar multi year grant as referenced here.  Unless I'm missing something and that money was never provided, Dr. Tuohy should be mid-way through that research.  IF he is done with the research, isn't he required to submit the findings?  After all, when someone funds a project, are they not entitled to see the end result?  If a solid foundation was established, wouldn't there be something more formal somewhere?  I'm not being facetious.  I'm serious.  I'd like to understand.
  • The fact that he was given an award by the very institution under whose name he works, while quite prestigious, doesn't hold the same weight as an award that might have come from the research community at large.  That he was roundly applauded after his presentation at an annual conference of his peers, isn't really science.  Call me crazy, but I prefer to see progression with research.  Applause doesn't fit into that paradigm.

I'm truly not trying to incite a riot but I know if this gets taken the wrong way, it's going to cause more divisiveness.  That is not my intent.  I would just like more detailed answers than I am able to find anywhere.  Just because someone tells me it's so, doesn't mean I am not entitled to follow up questions.  I will gladly throw my support behind anything that shows scientific promise.  But I need to SEE it for myself.  Not because Dr. Tuohy said so and not because anyone else says so. Show me the science.  Transparency.

Absent acceptable transparency, I have a few other questions, comments or perhaps just observations.

  • I'm a blogger.  I'm filled with snark and sarcasm.  I'm not trying to raise 6M dollars although if you are so inclined to send me money, I will be happy to provide you with an address.  Repeat:  I'm a blogger and I'm somewhat irreverent at that.....  However, those who are trying to get this vaccine funded are NOT just bloggers.  They are at the top of their games.  To have someone write words like "Now isn't that an innovation-breast cancer foundations working together instead of competing for every shred of pink?" or "What is this, high school?" sounds a bit sarcastic to me.  I can roll around in the mud.  A rather highly respected and extremely intelligent surgeon would be better served on the high road.
  • "The National Breast Cancer Coalition absurdly announced" they were going to develop their own preventive vaccine instead of funding one that is already sitting at the Cleveland Clinic.  If you wish to work together, I'm not winning any Nobel Peace prize but I think I can state with a high degree of certainty, this type of talk is really not very nice.
  • Despite the NBCC clock on the top of this page, I am speaking for myself and ONLY myself but it appears, with what has been shared about The Pink Vaccine, this IS one man working on his own.  The vaccine being supported by NBCC is a collaborative effort across some of the finest research institutions and the brightest minds in the country:  Cold Spring Labs, City of Hope, Mayo Clinic, U Penn to name just a few.
  • Lastly, a quick jump to Breast Cancer Trials shows there are presently 24 vaccines already in human trials.  All of these trials are to slow progression or deal with disease that has already metastasized.  Two of the three items noted in the success of The Pink Vaccine are for cancer that is already present.  Might this not be a duplication of research already in Phase II trials?  If I clearly understood the "prevention" part of the vaccine, it's only for a specific population of women.
My understanding of the vaccine project known as Artemis that was "absurdly announced" by National Breast Cancer Coalition: There is one goal and only one goal.  Prevention.  Those researchers are not seeking to incorporate anything other than finding a way to prevent breast cancer in ALL people.

All vaccines are not created equal.  And there's no one on the grassy knoll either.  I'd really like some solid answers before we heat up the tar AND before we go down that "cure is in a closet somewhere" argument.


14 comments:

  1. Thanks for your thoughtful post, Ann. I am really confused why NBBC and others won't fund Dr. Tuohy's vaccine. I've met with him, and he gave me a tour of his lab at Cleveland Clinic. When I asked, I was told something to the effect that he won't work with others. Collaboration is great, but I see no reason to reinvent the wheel.

    Also as far as prevention; yes, that would be a miracle, fabulous, indeed. But as someone with metastatic cancer fighting for her life, I'd like to think they are not giving up on a cure.

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    1. Hi Tami,

      None of what is perplexing me about this particular vaccine makes me change my position which I will hold until I see tremendous change.

      ****FIRST, we save lives******

      I've written here and on the METAvivor blog about my feeling that those living with Stage IV disease are the ones who must be our first priority. I've expressed my concern when I heard words along the lines of "prevent the disease in the first place and prevent those with the disease from spreading." In between those two places resides all of those whose cancer has metastasized.

      I agree with you. Curing YOU comes first. This has been the focus of my activism since I stepped into this arena.

      The only reason I am questioning this vaccine is because of the many questions (in my mind) that remain unanswered. I don't want a "glossy" answer, either. Evidence based medicine and scientifically based evidence are at the heart of what I believe. Something about this entire project is too secretive for me. I'd love more answers and I say that with the utmost respect and sincerity.

      Hugs to you,

      AnneMarie

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  2. Hi AnneMarie,
    will do this again,lost my previous post, and delete another one...

    I have send -for 20 years- grant submission to huge international agency, some were fund, some (a lot) were not, but always when a submission is rejected, they send the reviewers comment, so the investigator may correct then re-submit. Sometime it is only tiny problems sometime bigger, in any case, it is possible with the comments to correct what is wrong and resubmit, yes it can be refused again, but always with comments.

    For me, from my experience, they should know why it was rejected. Something is not ok with their vaccine.

    Note that I would be happy to know I'm wrong. But since the first time I heard of this vaccine, I have the feeling it is not right.

    Sorry for the typpos, french being my first language and my yesterday chemo gave me hard time, so this morning, my chemobrain makes me hear bells. :)

    Keep the good work AnneMarie, only you could have make me say this today ;)
    Hugs to you my friend,
    Suzanne

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    1. Suzanne,

      I appreciate (TREMENDOUSLY) that you read this while you are in your post chemo haze. Thank you for weighing in especially as someone with experience in the grant submission process AND someone living with Stage 4 IBC.

      I hope the bells go away (or they begin to sound like a song you really like).

      Every time I see you writing in English, you inspire me to dust off my Italian books and get going!

      xoxox

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  3. Goodness...here we go.

    Like Tami, my life is on the line here. While I may be doing well at the moment, I'm never more than 20 minutes from thoughts about how my story ends.

    Like Suzanne, I've been suspicious about this all along. Having done peer review before, it just doesn't add up. As Suzanne explains, grant proposals are review meticulously. Written notes are preserved from the initial readers on up through the final decisions makers. Said notes are provided to the researcher. It's that simple.

    How often do we see such dirvergent groups at odds? The governement (through NIH, NCI, DoD), not the NGOs (Komen, ACS), and presumably big pharma have ALL opted not to fund this research. Does that not mean SOMETHING?

    Ok, sure, I know there are conspiracy theorists out there. Somehow this doctor is being maligned. Or they don't want us to have a cancer vaccine. Any of that is theoretically possible BUT Dr. Tuohy had failed to share ANY information about WHY he is not getting the funding

    As someone living with mets, I suspect there are few people who would be more eager for a successful vaccine than I. I believe those of us who are never more than 15 minutes for a reminder that we are dying truly understand how critical a cure is.

    However, and I wish it were otherwise, until information about grant denials is made public, I suspect this "vaccine" is sitting on the shelf in the lab, exactly where it belongs.


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    1. Thanks, Lori...

      If people with passion about their beliefs could cure cancer, those of us who have grown so close through blogging, tweeting and commenting... and even lurking would have harnessed that energy and cancer would have been cured in about 3 minutes. People need to stop and take a breath. I'm not much for understanding all of the intricacies of the science, but I can look at a the broad picture see lots of question marks.

      Those questions deserve answers. That's my 2 cents....

      xoxox

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  4. AnneMarie,

    Thanks for writing this. I had to do some "in-between the lines" translation but anyone following the story knows who the players are.

    I call it "the strange case of Dr. Tuohy." Strange because he has a few ardent advocates that can't or don't explain what his work is about and why it's so promising....only that this poor cowboy can't get funding. There's the first red flag.

    Is it possible that his work is sloppy? Not at all promising? A failure in progress? These things happen. Even though he won't be the first tree to fall in the forest, why are others making such a fuss?

    There are other far more promising vaccine efforts in progress.

    jms

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    1. I do appreciate your words and yes, "in between the lines" was somewhat deliberate. My thought.... the minute I started naming people, it would get into the proverbial "pissing match" which really distracts from the point and you have made each of those points quite eloquently.

      Thank you for weighing in.... I'm quite anxious for San Antonio. I think Alamo BC Foundation put together a powerful group of advocates and the world is going to see what happens when true "innovation" comes together. A group of like-minded women with different backgrounds, perhaps some differing points but the ability to AGREE TO DISAGREE, set it aside and get to work.

      I say: Watch out world.

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  5. AnneMarie, well you have really hit home for me. I have been entered into a trial study, it will start the middle of October. It will be a vaccination "vaccine" trial. The way this trial is explained to me is it will really boost up my immune system and makes it stronger. Then when I follow up with new medications, it will help those medication work better because supposedly my immune system will be stronger. This is the theory, but of course we are talking about a trial. I am not sure where this falls in, but I can wish it will help with my mets and really help with the end results of helping find a cure. I will let you know how this goes. What I do know is for four weeks in a row I will get big shots in both arms and both legs. None of this is at all fun. Thinking about you, and wishing you a great weekend.
    Chris, Texas

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    1. Hi Chris...

      I'm always happy to see you here and your words illustrate my point. There ARE "vaccines" in trials on humans. Obviously, you are in one of those vaccine trials I found on the Clinical Trials websites. I'm going to keep my reply personal to YOU, my very dear friend. I am cheering you on and I am filled with SUCH GRATITUDE that you are willing to endure those big shots. I have the highest hopes that this will have you shouting NED because nothing will make me happier. You are very dear to me...

      Much love,

      AnneMarie

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  6. Excellent point AnneMarie! I am trying to get into a trial for a vaccine. They are fighting with my insurance company (though the trial is funded) and working through the 10 vials of blood they took from me.

    I've always wondered why the "pink vaccine" didn't get funding from Komen. While SGK has serious problems, I can't believe they would refuse to fund something that had real promise. I am also suspicious of the lack of peer-reviewed publications.

    I want a cure. I don't want my cancer to kill me.

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    1. Hey A...

      I apparently missed a mess of comments..... too busy playing Pink-A-Boo (actually, with you!)

      I want a cure, too. I have too many of you guys who mean VERY much to me..... I'm banking on a breakthrough....

      xoxox

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  7. For your information Dr Tuohy got his funding .

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    1. I read the funding announcement and I'm happy that his research will proceed. I never wanted to see him held back, I honestly wanted to understand the answers to the questions I posed. A very dear friend of mind has been backing Dr. Tuohy and she is extremely impressed with what she learned. Although she could not share the information with me, I do trust her judgement and I am hopeful that this will spawn new treatment for triple negative disease.

      AnneMarie

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