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

[Hope123]

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.

 

[urbantravels]

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

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

Posted at 4:23 PM ET, 12/ 3/2010
Red Cross bars chronic fatigue patients from donating blood
By Rob Stein

The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease.

The virus is known as xenotropic murine leukemia virus-related virus or XMRV. Some studies have found that people with chronic fatigue syndrome are more likely to carry the virus. But it remains far from clear whether the virus causes the disease.

Nevertheless, the Red Cross decided to bar people with the syndrome from donating "in the interest of patient and donor safety," according to an announcement from the organization.

"At present, there are no specific federal recommendations regarding deferral of individuals with Chronic Fatigue Syndrome (CFS) or other diseases that have been associated with Murine Leukemia Virus-related virus (XMRV) infection. Nevertheless, in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS," the statement said.

"There is currently insufficient data to conclude that XMRV is transmitted through blood transfusion. However, the National Heart, Lung and Blood Institute (NHLBI) Task force is conducting research to determine the frequency of the virus in the donor population, whether it is transfusion-transmitted, and whether recipients become infected and develop the disease," it said.

A task force that reviews blood safety for an organization known as the AABB recommended in June that blood collecting organization "actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome ... or myalgic encephalomyelitis (ME), from donating blood or blood components. In addition, any donor with symptoms of CFS would be deferred if, on the day of donation, they respond negatively to the question, 'Are you feeling well today?' " the agency said.

The recommendation came after new research strengthened the possible connection between the virus and the syndrome.

"The Red Cross has implemented the AABB recommendations and has gone further to implement indefinite deferral for donors who reveal a history of a medical diagnosis of CFS," the statement said.

 

[jspotila]

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.

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.

 

[CBS]

just talked to the media dept at the red cross national headquarters. they can't "reach" the woman who wrote the document that put the deferral (ban) in place. she'd be the woman who would know the exact date the policy of deferral was started. ("it is a friday afternoon, and some people went home early," I was told.) but the person i spoke to said that "the deferral was put in place in october, that i did find out." and she promised to call me on monday with an exact date.

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?

 

[urbantravels]

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.

 

[RivkaRivka]

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.

 

[RivkaRivka]

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

 

[urbantravels]

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

Fun fact per Wikipedia:

The American Red Cross supplies roughly 44% of the donated blood in the United States, which they directly sell to hospitals and regional suppliers. Community-based blood centers supply 50% and 6% is collected directly by hospitals.

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.

 

[RivkaRivka]

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

 

[jspotila]

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:

as an interim measure until further definitive data are available, its member blood collectors, through the use of donor information materials available at the donation site, actively discourage potential donors who have been diagnosed by a physician with CFS

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.

 

[RivkaRivka]

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

 

[Gemini]

everyone contact the media contacts they have!

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?

 

[RivkaRivka]

great idea. are they taking videos?

 

[CBS]

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

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 ...)

 

[George]

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?

 

[Gemini]

great idea. are they taking videos?

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!

 

[urbantravels]

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.

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.

 

[jspotila]

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:

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]

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.

 

[RivkaRivka]

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