American Red Cross Defers CFS Donors

[shannah]

It's Friday afternoon folks - Big News!


American Red Cross Statement on XMRV and Chronic Fatigue Syndrome
National Headquarters
2025 E Street, N.W.
Washington, DC 20006
www.redcross.org
Contact: Public Affairs Desk
FOR MEDIA ONLY
media@usa.redcross.org
Phone: (202) 303-5551
.WASHINGTON, Friday, December 03, 2010 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.
XMRV infection has been associated in some studies with prostate cancer and chronic fatigue syndrome, but at the present time these disease associations have yet to be confirmed.

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.

An AABB Interorganizational Task Force is charged with reviewing all available data, making recommendations for further action to assess the risk of XMRV transmission through blood transfusion, develop mitigation strategies as needed, and to provide information for blood donors, recipients and the public.

The AABB Taskforce released Association Bulletin #10-03 in June 2010, recommending that blood collecting organizations through the use of donor education materials available at the donation site actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS) 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 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.


About the American Red Cross:
The American Red Cross shelters, feeds and provides emotional support to victims of disasters; supplies nearly half of the nation's blood; teaches lifesaving skills; provides international humanitarian aid; and supports military members and their families. The Red Cross is a charitable organization not a government agency and depends on volunteers and the generosity of the American public to perform its mission. For more information, please visit www.redcross.org or join our blog at http://blog.redcross.org.

http://www.redcross.org/portal/site...nnel=00a00628b1cde110VgnVCM10000089f0870aRCRD

 

[urbantravels]

Kudos to the Red Cross for getting out ahead of the AABB on this one.

 

[Sasha]

Yep, great Friday timing!

 

[camas]

The old Friday news dump. Is there a distinction between deferred and banned?

 

[urbantravels]

No. "Indefinitely deferred" is a blood bank euphemism for "banned until we tell you otherwise." It's rare for such a decision to be later reversed although there are scenarios where it might happen.

Note to Shannah - the headline on this thread should probably read "American Red Cross," since the Red Cross is an international organization but it is the American Red Cross specifically that has taken this decision.

ETA: I incorrectly stated that "indefinitely deferred" meant "banned for life" which it doesn't, exactly. But for us, I think it probably does.

 

[camas]

Thanks, urbantravels.

 

[shannah]

No. "Indefinitely deferred" is a blood bank euphemism for "banned for life."

Note to Shannah - the headline on this thread should probably read "American Red Cross," since the Red Cross is an international organization but it is the American Red Cross specifically that has taken this decision.

You're right urban travels and thanks for the recommendation. I'm never too sure how much room I've got for titles to show so usually try to condense them. It seems when I figure it out, it's all forgotten by the next time I want to post something.

I'll see if a moderator will add that in.

(Edited Later: Voila - I see it's done!)

 

[illsince1977]

Buried to die a slow death in the Friday afternoon news cycle, of course. Just in case anyone else had trouble finding the press release on the Red Cross website, the link is http://www.redcross.org/portal/site...toid=dc099a02fbcac210VgnVCM10000089f0870aRCRD

 

[VillageLife]

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.

This is a very good day for us....and one day closer to treatment!

 

[shannah]

Washington Post covers the ARC story:

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.


A man gives blood for the Red Cross. (James A. Parcell-For the Washington Post)"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.

The Food and Drug Administration, which regulates blood safety, had no immediate comment on the decision. The agency is convening a panel of outside experts to review the issue later this month.

This post has been updated since it was first published.

By Rob Stein | December 3, 2010; 4:23 PM ET
Categories: Chronic Conditions, FDA, blood safety, red cross

 

[muffin]

Sounded Wishy-Washy CYAish to me

QUOTE=camas;141162]The old Friday news dump. Is there a distinction between deferred and banned?[/QUOTE]

I found this announcement rather weak. Seems to me that the ARC is doing a major CYA without making the public panic. Very weak language to me. Weak.

Just behind covering - defer? bland word...:mask:

 

[urbantravels]

Bland and institutional language. What other kind of language would you expect the ARC to use?

I should correct something I posted earlier - "indefinitely deferred" does not mean "banned for life" - it means "banned until we decide otherwise." For the Red Cross and other blood banking organizations to go back on a deferral decision like this, though, is a rare event. *If* the cause of ME/CFS is definitively determined, and *if* that cause turns out to be completely curable, say a virus that can be completely eradicated from the body through treatment (sadly I think we all know how unlikely that is, but say for the sake of argument) ... then they could decide to let people who have been cured and cleared of the virus donate again. As I said, possible but very much on the unlikely side of things.

There are lots of ways to get yourself banned, I mean deferred, from giving blood, some of them very conservative indeed - the ban on men who have had sex with other men at any time ("even once") since 1977 is still in place and somewhat controversial, since perfectly healthy HIV- men are thereby banned.

I've got at least one ex-boyfriend who would have been disqualified in so many ways from giving blood (he never has) that we always joked there should be a special deferral rule specially named after him. Let's just say he had an interesting past.

 

[andreamarie]

my late mother volunteered for the ARC with the travelling blood bank. she said yrs ago that the ARC was VERY conservative about donations, especially after HIV. E.g. a lupus dx disqualifies you although they have no evidence you could transmit antibodies.

 

[Cort]

I think this is pretty good.....the largest blood donation organization in the US has decided - contrary to federal guidelines - to ban the donation of blood from people with CFS. If you get behind the bland language - that's a pretty startling fact really. I'm sure the people at the AABB were not pleased at all to hear this.

 

[jspotila]

Chronology

(I cross posted this to the thread in the Advocacy section since we seem to 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.

 

[*GG*]

I recieved the same message from an email that I sent.

 

[*GG*]

I recieved the same message from an email that I sent.

It's Friday afternoon folks - Big News!


American Red Cross Statement on XMRV and Chronic Fatigue Syndrome
National Headquarters
2025 E Street, N.W.
Washington, DC 20006
www.redcross.org
Contact: Public Affairs Desk
FOR MEDIA ONLY
media@usa.redcross.org
Phone: (202) 303-5551
.WASHINGTON, Friday, December 03, 2010 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.
XMRV infection has been associated in some studies with prostate cancer and chronic fatigue syndrome, but at the present time these disease associations have yet to be confirmed.

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.

An AABB Interorganizational Task Force is charged with reviewing all available data, making recommendations for further action to assess the risk of XMRV transmission through blood transfusion, develop mitigation strategies as needed, and to provide information for blood donors, recipients and the public.

The AABB Taskforce released Association Bulletin #10-03 in June 2010, recommending that blood collecting organizations through the use of donor education materials available at the donation site actively discourage potential donors who have ever been diagnosed by a physician with chronic fatigue syndrome (CFS), also known as chronic fatigue and immune dysfunction syndrome (CFIDS) 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 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.


About the American Red Cross:
The American Red Cross shelters, feeds and provides emotional support to victims of disasters; supplies nearly half of the nation's blood; teaches lifesaving skills; provides international humanitarian aid; and supports military members and their families. The Red Cross is a charitable organization not a government agency and depends on volunteers and the generosity of the American public to perform its mission. For more information, please visit www.redcross.org or join our blog at http://blog.redcross.org.

http://www.redcross.org/portal/site...nnel=00a00628b1cde110VgnVCM10000089f0870aRCRD

 

[RivkaRivka]

the question is, WHEN did the amer red cross implement this ban?

p.s. we are discussing this on another thread, too
http://forums.aboutmecfs.org/showth...y.-Not!-quot-Campaign-and-video-(Nov-30-2010)

 

[Cort]

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

thanks for clarifying that - I assumed that they would simply ask everybody.

 

[urbantravels]

We need a healthy ally to go give blood and report back, because I don't understand from all of this what the heck is going on at the donation point. It's about as clear as mud.

I would also be curious to know if there are or have been other diseases or conditions that get or have gotten the "strongly discourage" treatment. Seems to me that they should either defer you or not, and "discouragement" is a pretty nebulous concept.