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

[urbantravels]

Did the American Red Cross actually state that activist pressure influenced their decision, or is that a statement by the CAA?

 

[Carryon]

"We have added the attached flyer to our what-you-must-know packet for donors to read on their arrival."

Sara O'Brien
Communications Manager
American Red Cross

Rivka forwarded to me to post... Mike

 

[RivkaRivka]

Did the American Red Cross actually state that activist pressure influenced their decision, or is that a statement by the CAA?

it was the red cross, i thought. i'll try to find the quote.

 

[RivkaRivka]

it is #38 post on this thread. it said (was this from their facebook page?):

"The American Red Cross (ARC) developed its current policy shortly after the release of the June 18, 2010 AABB Association Bulletin and implemented this policy across its blood donation centers on Oct 11, 2010. Advocates who engaged with the ARC through letter-writing, Facebook and YouTube are to be congratulated for bringing the issue to greater attention. "

 

[RivkaRivka]

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:

jspotila, can post the URL to this quote? thanks!!!!!!

 

[urbantravels]

it is #38 post on this thread. it said (was this from their facebook page?):

"The American Red Cross (ARC) developed its current policy shortly after the release of the June 18, 2010 AABB Association Bulletin and implemented this policy across its blood donation centers on Oct 11, 2010. Advocates who engaged with the ARC through letter-writing, Facebook and YouTube are to be congratulated for bringing the issue to greater attention. "

That statement was on the CAA's Facebook page.

 

[RivkaRivka]

That statement was on the CAA's Facebook page.

ooooooooooooh.

 

[RivkaRivka]

RivkaRivka posted her notice on Nov 30, and the ARC says it implemented the new policy across its blood donation centers on Oct 11. How did RivkaRivka's action have anything to do with this?

my action had nothing to do with the new policy. but i think ALL of our actions (facebook campaign, letters and video) all addressing this ban issue, all had an impact on the amer red cross putting out the press release.

 

[George]

RivkaRivka posted her notice on Nov 30, and the ARC says it implemented the new policy across its blood donation centers on Oct 11. How did RivkaRivka's action have anything to do with this?

Yes, but the ARC didn't publicize their actions until December 2nd (big grins) They was flyin' under the radar till they got hit by the Rivka machine. (big grins)

 

[RivkaRivka]

RivkaRivka posted her notice on Nov 30, and the ARC says it implemented the new policy across its blood donation centers on Oct 11. How did RivkaRivka's action have anything to do with this?

personally, at first i thought that there was no way the video/email campaign i initiated could have resulted in the bigwigs at the red cross putting out the press release in just 4 short days after the video/email campaign started. but after thinking about it overnight, i now think it was likely instrumental -- in a tipping point kind of way.

the previous facebook and email campaigns and letters laid the ground work every effectively. then my video/email campaign (in which the emails were cc-ed to the CEO/President of the Amer Red Cross) just tipped the scales.

i think that the red cross had not told the world about their Oct 2010-implemented ME/CFS blood deferral yet because they were hoping a real test to test the existing blood supply could be found first, before they declared that we patients (and anyone with xmrv) may have contaminated the blood supply. but then when the CEO/President got about a dozen (and that may be all she got! i have no idea!) emails that included that video, she likely thought, "hey, we ARE deferring ME/CFS patients. we may as well tell the world about it now instead of getting bad press that we have not yet done it."

either way they would have gotten bad press. so they took the high road.

of course i may have all this wrong!

now, as george (on the Phx Rising forum) says, let's start a campaign now asking the FDA to ban all ME/CFS patients from donating blood. and let's do this now, before the Dec 14-15 meeting.

- rivka

 

[jspotila]

Did the American Red Cross actually state that activist pressure influenced their decision, or is that a statement by the CAA?

The congratulatory statement to activists was from the Association, NOT the American Red Cross.

Edited to add that I have no information on when the ARC started working on the press release.

 

[helen41]

Rivka-
" i thought that there was no way the video/email campaign i initiated could have resulted in the bigwigs at the red cross putting out the press release"
I personally think you need to give yourself a huge pat on the back and accept that you did something amazing. Sure, maybe the stars were aligned, but if you didn't launch your campaign, I'm not at all convinced they wouldn't have carried on avoiding the issue. This is for you
:victory:

 

[*GG*]

RivkaRivka,

Maybe your best YouTube yet--loved it! :victory:

Let's see if they reply...

Sushi

I agree, great job!

 

[Marty]

Thanks to urbantravels for posting the Washington Post article. Here are two comments that I sent them:

Thanks for posting an article that might really upset the public, Rob. As a patient, we were advised not to give blood since the late 1980's because this disease had all the hallmarks of a retroviral infection. In 1991 we had pictures of the virus, yet the CDC shot it down, just like they did with the HIV virus. They are directly responsible for the contamination of the blood supply for years. Heads ought to roll; the CDC fought it with your money.


And a second one:
Note: this disease is not chronic fatigue, as shown in the headline of the article, so the general population does not need to worry. Fatigue is just a symptom that is found in most illnesses and overworked people. The Red Cross is referring to Chronic Fatigue SYNDROME, a neuroimmune disease known around the world for decades as M.E. (Myalgic Encephalomyelitis). The US government's Centers for Disease Control in 1988 tried to change the name to belittle the disease, just like they called AIDS "Gay Men's Disease", and the patients have fought those names ever since. The compromise name for CFS at the moment is ME/CFS. It is a severely debilitating disease, not just being sleepy. And it has recently been found to be highly associated with a retrovirus and a threat to the blood supply, thus the ban from the Red Cross.

This is direct advocacy exposing the CDC in a Washington newspaper for endangering the public. I consider that a letter worth writing because it is not just a plea for sympathy; it delivers a real consequence to the CDC. Let's redirect our advocacy to create real consequences, not just talk.

 

[*GG*]

No, it's new news - today's release is the first official announcement of this change in policy.

I'm sure the American Red Cross has been working on the decision for some time - and whatever poor Red Cross employee was put in charge of that Facebook questons thread probably had to desperately try to get in touch with someone higher up who could tell him/her what was going on with this XMRV thing. I wouldn't take any answers that were posted on that Facebook thread as an official statement by the Red Cross, probably just the result of some organizational mishmosh where someone said something they shouldn't have, officially, just yet. I am correct in recalling that the Facebook questions thread was later removed, yes?

"I am correct in recalling that the Facebook questions thread was later removed, yes?" Not sure but would really like to know this! I did not know that such a thing could be done?!

GG

 

[urbantravels]

I see that I have been all know-it-all about this when actually the situation was as clear as mud and I knew nothing. Well, it wouldn't be the first time.

But as far as removing Facebook threads - you could do it yourself on your own page by deleting one of your own posts. It's not like a major cover-up or anything, I think they saw the Q&A thread was spinning out of control and decided it was best taken down.

 

[Gemini]

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

Glad you're going to ask the FDA about video testimony.
The CFS Advisory Committee recently accepted that form
of testimony, didn't they?

 

[RivkaRivka]

Glad you're going to ask the FDA about video testimony.
The CFS Advisory Committee recently accepted that form
of testimony, didn't they?

yes, but they are know they are working with people who are bedridden. the fda may not be as enlightened.

 

[RivkaRivka]

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!

can you or anyone tell us who the person to submit testimony is and how to contact them? where did you get this above quote? do you have a website?

rivka

 

[Gemini]

yes, but they are know they are working with people who are bedridden. the fda may not be as enlightened.

Rivka,

You're right, Wanda Jones understands the needs
of bedridden people and tries to help but the FDA
may not.

I hope the FDA follows her lead and lets you
submit your video. If you encounter a problem I
wonder if Wanda could help you out in this area
with them? Just an idea.