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Deadline 19 July: email FDA Blood Committee!

Discussion in 'Action Alerts and Advocacy' started by creekfeet, Jul 17, 2010.

  1. creekfeet

    creekfeet Sockfeet

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    BEen too sick to get this out quicker, sorry, I've known a few days. Shoot them an email even if it's one sentence: "Keep XMRV out of the blood supply!" Also sorry if this duplicates something someone else already posted. Too sick to read but managed to write today.

    emails can be sent to BOTH of these people:
    Bryan.Emery@fda.hhs.gov or AND pearline.muckelvene@fda.hhs.gov

    Here's what I wrote myself and sent. I give permission to copy and duplicate this, use it as a template, whatever.

    Open Letter To Mr. Emery and the members of the Blood Products Advisory Committee:

    "When [AIDS] began turning up in children and transfusion recipients, that was a turning point in terms of public perception. Up until then it was entirely a gay epidemic, and it was easy for the average person to say 'So what?' Now everyone could relate." - Harold Jaffe of the CDC for Newsweek

    In 1982 the risk of spreading AIDS through contaminated blood was apparent. It was not until 1985 that US blood donations were screened for the retrovirus HIV. When will blood donations be screened for the retrovirus XMRV, which has been linked strongly to ME/cfs and prostate cancer?

    Please don't suggest, as some have, that the link of XMRV to disease is disputed or equivocal. We all know that the association of XMRV with CFS is very strong. It has been confirmed by Drs. Alter & Lo, eminent research scientists with the US NIH and FDA. Action to protect the blood supply should be taken immediately.

    It is outrageous that the Blood Products Advisory Committee, in its May 11 2010 meeting, allowed public perception of risk to be dismissed as a ploy by advocacy groups to gain publicity. If you heard AIDS activists in 1983 urging protection of the blood supply to stop the spread of AIDS, did you attribute to them some selfish motivation of desiring attention to their disease? Were you not glad that AIDS patients and those who cared about them wanted to take action to protect the general population?

    What do you suppose are my motivations in sending in this comment? I have Myalgic Encephalomyelitis ("CFS"). My child is also ill with the disease. I'm mostly housebound and sometimes bedridden. He, mostly bedridden, has lost his teen years. We both face 20 years shorter life than the general population and a higher than normal risk of death by heart disease, rare cancers, and suicide. The suicides in ME ("cfs") patients occur as a result of long-term pain and of failure of the medical profession and health care organizations to respond to our needs. Yes, we suffer and our disease requires attention. But why would I spend my very limited energy discussing blood supply if not from concern over real and significant risk to the general population?

    I would like to be able to go out and enjoy the summer weekend as many Americans are doing today. Unable to do that, I would like at least to be able to apply my limited energy to the many household tasks that pile up when one is bedridden. But I prop myself up and write to you.

    When I contact my elected representatives and the press, when I work to raise public awareness, and when I write to you who are stewards of public health, I am doing so in hopes that other parents will not have to see their children suffer as I have seen mine. To protect the health of others, I personally won't be donating blood, but there may be as many as 20 million Americans carrying XMRV today. Most are unaware of infection. Some of them are asymptomatic for the related diseases, and may or may not develop them. Any of them may be unaware of the danger they pass along if they donate blood. The technology exists to screen blood for this retrovirus.

    And yet, aware of this danger, it seems that the inclination of the Blood Products Advisory Committee back in May was to manage public perception, rather than managing actual risk. I hope that dangerous inclination will be reversed at this month's meeting.

    All of you in the committee must be aware of the mantel of responsibility upon your shoulders. You have the opportunity to act now to limit the spread of chronic, disabling and life-threatening illness. I envy you your power to act for great good. Please use it.

    Sincerely,
    Kassy Fatooh
    Written from bed on 18 July 2010

    ###


    Friends, public comment is due by July 19th. I have just sent the above. Please take a moment to write, also. If you want more background information, please see:

    Blood Products Advisory Committee: Minutes of May 11 meeting of FDA

    Announcement of July 26-27 meeting with links to meeting materials and public comment email addresses

    Draft Agenda for the upcoming meeting


    Dr. Alter was in attendance at the May meeting. His presentation in Zagreb since that time leaked his research results confirming and in fact strengthening the work of Lombardi et al as published in Science, Oct 2009, linking retrovirus XMRV with ME/cfs: results of which we can be sure all attendees at the June 26 meeting are aware. Here is the pertinent slide from Dr. Alter's Zagreb presentation: ZAGREB SLIDE The entire slide set can be viewed at ZAGREB PRESENTATION by scrolling down to Day 1, session 4, 1-Alter.pdf
     
  2. creekfeet

    creekfeet Sockfeet

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    Also I sent copies to my senators, a list of press contacts, and posted on my FB notes.
     
  3. Mya Symons

    Mya Symons Mya Symons

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    I live in Wyoming and I contacted Senators Barasso and Enzi a few months ago. Senator Barasso is a doctor and Enzi is on the Health committee. Senator Barasso always sends me an e-mail back himself. He seems interested and told me to keep him updated on XMRV.

    Oh, one more thing: these two only answer letters from their constituents (people who live in their state and district). If any body has any ideas on what I might include in a follow-up letter such as something you want them to know, please let me know and I will include it. I am going to go through my e-mail and try to find the original letter a sent a few months ago.
     
  4. dsdmom

    dsdmom Senior Member

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    Done - thanks for posting!
     
  5. creekfeet

    creekfeet Sockfeet

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    Thanks all who are writing. We've got a whole 'nother day to submit public comment, be it ever so brief!
     
  6. creekfeet

    creekfeet Sockfeet

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    Ask friends to shoot off an email, too!
     
  7. Trooper

    Trooper Senior Member

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    Done, thanks again for posting :)
     
  8. dsdmom

    dsdmom Senior Member

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    I received an email back from Bryan Emery today - essentially thanking me for writing and that my comment would be provided to the committee. He also stated that this session is informational only and that there will not be decisional discussion by the Committee.
     
  9. aruschima

    aruschima I know nothing

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    Same, i also received a mail from him. I blog the linke and text of his recommended information. Check it out on BLOGS.

    Concerned Mother and Son,

    Thank you for your comment related to the Blood Products Advisory Committee meeting on July 26.

    Your comment will be provided to the Committee.

    Background information for the meeting can be found at

    http://www.fda.gov/AdvisoryCommitte.../BloodProductsAdvisoryCommittee/ucm205013.htm
    Please note this session is informational only. There will not be decisional discussion by the Committee.

    Thanks

    LCDR Bryan Emery
     

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