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"Protecting the Nation's Blood Supply. Not!" Campaign and video (Nov 30, 2010)

Discussion in 'Action Alerts and Advocacy' started by RivkaRivka, Nov 30, 2010.

  1. Hope123

    Hope123 Senior Member

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    I don't get out often andn of course, the blood bank would not be on my list of places I need to go but if you get the CFIDS Association of America paper report, there is an ad that I believe is being posted (or being planned to have be posted?) at blood donation sites. Looks like a joint effort of blood banks and the CAA. It talks about CFS, deferral of donation, and refers people to Cfids.org for more info about CFS.
  2. urbantravels

    urbantravels disjecta membra

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    Your wish, apparently, is Rob Stein's command:

    http://voices.washingtonpost.com/checkup/2010/12/red_cross_bars_chronic_fatique.html

  3. jspotila

    jspotila Senior Member

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    That poster was created last summer after the AABB issued its guidance on deferral of people with CFS. AABB member blood banks had to implement that policy by October.
  4. CBS

    CBS Senior Member

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    The deferral was in place in October? Is this accurate? When is a policy a policy; the day you announce it as a policy or some date in the past from which you now say you've following the policy?
  5. urbantravels

    urbantravels disjecta membra

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    I think the Red Cross had better get its story straight.

    They were NOT at "deferral" in October: they were at "strongly discourage" in October, per the AABB directive. I strongly suspect whoever spoke to Rivka got it wrong.
  6. RivkaRivka

    RivkaRivka Senior Member

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    well, the red cross woman i spoke to said she'd get to the bottom of it... on monday. and would call me back then to tell me.
  7. RivkaRivka

    RivkaRivka Senior Member

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    anyone seen it yet on USAToday? health reporter alison young said she urged her editors to post something on this fast.
  8. urbantravels

    urbantravels disjecta membra

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    Doesn't seem to be there yet. I think Rob Stein scooped everybody on this one.

    Fun fact per Wikipedia:

    I had thought the Red Cross was responsible for a higher percentage of donor blood in the US, but my view may be skewed because they are so dominant where I live. I've given blood many times in the past, always via the Red Cross, either bloodmobiles or permanent donor centers.
  9. RivkaRivka

    RivkaRivka Senior Member

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    i found this quote in rob stein's bio on the washington post website:

    "My stories often provoke people to call and e-mail me," Rob told me, "and I'm really looking forward to having a chance to have more give and take with all of our readers."

    ____

    so in the interest of giving rob what he wants, maybe some of us should email him to thank him for his article today? his email is

    Rob Stein steinr@washpost.com
  10. jspotila

    jspotila Senior Member

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    Chronology

    (I cross posted this to the thread in the XMRV media section, since we have two conversations ongoing)

    The AABB recommendation on potential blood donors with CFS was issued June 18, 2010. That recommendation stated in part that:

    The AABB did not recommend adding a question about CFS history to the donor interview, but relies on the poster and handouts to communicate that CFS patients should not donate. The poster states "If you have been diagnosed with CFS, please do not donate blood." As of June 2010, the equivalent blood groups in Canada, Australia and New Zealand "indefinitely defer all potential donors who volunteer that they have a history of CFS in response to general health questioning."

    As Dr. Louis Katz presented in his webinar on XMRV and Blood Safety, the Mississippi Valley Regional Blood Center (a member of the AABB) policy language asks potential donors who have CFS or have a history of CFS to refrain from donating blood.

    Today's statement from the American Red Cross (another member of the AABB) explains the ARC's implementation of the June AABB recommendation that educational materials be used at collection sites to discourage people with CFS from donating as an interim measure until more is known about XMRV. The ARC press release specifically refers to the June AABB recommendation. ARC has to implement the June AABB recommendation because it is a member of the AABB. The June AABB recommendation is the most recent policy for blood banks, and each member organization implements the policy themselves (i.e. MVRBC and ARC). As the press release states, the ARC "will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS." The press release also says that this policy goes beyond what AABB requires. It is very similar to the Candian/Australian/New Zealand practice of deferring someone who volunteers that he/she has a history of CFS.

    None of the US groups - AABB, MVRBC, ARC - have added a question to the donor interview to inquire whether the donor has a history of CFS. Adding such a question was one of the recommendations from the CFSAC's May 2010 meeting, but that recommendation has not been acted upon by the Secretary.
  11. RivkaRivka

    RivkaRivka Senior Member

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    thanks! i think the question is, tho, WHEN did the american red cross implement/start this policy of deferring?
  12. Gemini

    Gemini Senior Member

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    Rivka,

    Your Blood Campaign video is excellent!
    Clear, concise and right on the mark!

    Would you consider submitting it as public
    testimony to the Blood Advisory Committee's
    Dec 14-15 meeting?
  13. RivkaRivka

    RivkaRivka Senior Member

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    great idea. are they taking videos?
  14. CBS

    CBS Senior Member

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    Or is Jennie saying that the info needs to be volunteered (no active questioning about a history of CFS or CFS diagnosis) and so it isn't really like the other deferrals (if a tree falls in the forest and nobody asks about it ...)
  15. George

    George waitin' fer rabbits

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    I agree with GG, please do submit this video. That's the great thing about this video is that there is no "hype" just a fantastic expression of concern on the part of the patient (Rivka let's us hang out on her coat tails here, grins) community and it makes us all look good for that concern. It would be a feather in out cap.

    In answer to the blood deferral by the ARC. I remember it came out shortly after the AABB deferral release in June but I can't find anything on it in the threads. The Great thing about this particular release is that ARC felt that it was important to respond. It's really empowering that after we started the e-mail campaign for release of the BWG Phase II results that, while we didn't get anything from individuals we did get Amy's piece in the WSJ, and after this campaign we got the re-release of the ARC current policy. So they are listening and we need to let them know what we want. Pushing for transparency of the process that is going on is not asking too much.

    The real "holy grail" however is to get a "question" inserted in the blood donation intake survey. If we can get a question that asks "do you now or have you ever had a diagnosis of ME/CFS" then we are real deal, right up there with mad cow and HIV. Woohhoo. The other thing is to get the FDA is actually "BAN" ME?CFSers. The FDA is the only government body in the US that has that power. So if we can get a ban issued by the FDA then we are definitely in rarefied company. (grins)

    So should we have another campaign this coming week to ask the AABB and ARC to recommend the FDA ban us?
  16. Gemini

    Gemini Senior Member

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    I'd request the video be played at the meeting AND
    written testimony containing a link to it become
    part of the official record (due by Dec 7th).

    Here's what they posted:

    Public Participation Information

    Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee.
    * Written submissions may be made to the contact person on or before December 7, 2010
    * Oral presentations from the public will be scheduled between approximately 10:15 a.m. and 11 a.m. and between 3:45 p.m. and 4:15 p.m. on December 14, 2010, and between approximately 11:30 a.m. and 12 noon on December 15, 2010. Those individuals interested in making formal oral presentations should notify the contact person and submit a brief statement of the general nature of the evidence or arguments they wish to present, the names and addresses of proposed participants, and an indication of the approximate time requested to make their presentation on or before November 29, 2010. Time allotted for each presentation may be limited. If the number of registrants requesting to speak is greater than can be reasonably accommodated during the scheduled open public hearing session, FDA may conduct a lottery to determine the speakers for the scheduled open public hearing session. The contact person will notify interested persons regarding their request to speak by November 30, 2010.

    Keep us posted!
  17. urbantravels

    urbantravels disjecta membra

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    I'm picturing many conversations of this nature:

    "Have you ever been diagnosed with Chronic Fatigue Syndrome?"
    "Oh my gosh, I'm really tired all the time, is that what you mean?"
    "No, a diagnosis of Chronic Fatigue Syndrome by a doctor."
    "Well, I told my doctor about it and he told me I need to get more sleep and exercise, so I've been feeling better lately."
    "No, we mean the disease Chronic Fatigue Syndrome."
    "Isn't that that thing from the 80s that they figured out was just yuppie hysteria? They never decided that was a real disease, right?"

    etc. etc. etc.
  18. jspotila

    jspotila Senior Member

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    CBS is correct - there is still no question in the donor interview about whether a person has CFS. That is true in Australia, Canada and NZ as well.

    Here is the information from the ARC posted today on the Association's FB page:

  19. RivkaRivka

    RivkaRivka Senior Member

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    holy cow. they are flat out acknowledging our role in this.

    separately, i'll ask the FDA if i can submit a video testimony.

    YES, we need to pressure the FDA now, before the dec 14-15 meeting, to have them ask "have you ever had ME/CFS" before a person donates blood.
  20. RivkaRivka

    RivkaRivka Senior Member

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    p.s. the washington post article was on PAGE 2 of today's hard copy newspaper!

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