Mad Cows or Mad Policy?

I’ve been a Red Cross Blood Donor since the 80’s, and have given gallons of blood. Blood donation is mildly inconvenient, not painful, and saves lives. It is something I feel very strongly about, and I regular encourage others to become donors too (especially in the winter when blood supplies run dangerously low). About 7 or 8 years ago I stopped giving blood, and instead become an aphaeresis donor. I had never even heard of aphaeresis before then, but a friend of the family needed bone marrow, I took the blood test and did not match, but I was an HLA match and was thus able to give him platelets. And that’s how I learned about aphaeresis, a slightly more complicated form of blood donation that allows for the collection of specific blood components (most commonly platelets and plasma). Aphaeresis collection usually involves two needles, one in each arm, whole blood is drawn from one arm, passed through a centrifuge where the parts can be separated and collected, and then returned into the other arm. Like blood donation, the process is not painful, but unlike blood donation, it is very inconvenient as the process takes up to 2 hours (as opposed to 15-20 minutes for whole blood). Another important difference, donors must wait 56 days between whole blood donations, but aphaeresis donors may donate every 3 days if needed, and so aphaeresis donors often get emergency requests to donate when specific components are needed for specific patients (often the same patients to whom they just donated too). There are very few aphaeresis donors, and so my 39 aphaeresis donations were important, even more so as isolated blood components have a very short shelf life (far less than that of whole blood).
But I am no longer a donor. On my 40th visit to the local collection center, I was rejected. The reason? Fear of variant Creutzfeld Jacob Disease, more commonly known as Mad Cow Disease. New guidelines dictate that persons living for more than 3 months in England (and some additional locations) since 1980 are ineligible to donate so as to “keep vCJD out of the blood supply by avoiding collections from those who have been where this disease is found”. This, even though (quoting from the Red Cross) “There is no evidence that vCJD can be transmitted from donors to patients through transfusion” (the EU is reported to have received the first report of infection via transfusion, but this has yet to be verified). So, as a potential Mad Cow victim I am no longer eligible to donate blood or platelets. Sound policy? I am not so sure; to date the number of Mad Cow victims worldwide is estimated at under 150, compared to over 20,000 leukemia related deaths in 2003 in the USA alone. So, because of a far-fetched and as yet uncorroborated concern that may affect a very small number of people, thousands of leukemia patients risk not having the platelets they need to help they fight infection while undergoing therapy or recovering from transplants, or risk having to receive donations from multiple donors which greatly increases the odds of serious immune system reactions. And that is just leukemia patients, and just aphaeresis. The Red Cross has announced that its blood supply is “critically” low, and at the same time turns away donors due to rather far-fetched concerns.
The truth is that this is not the Red Cross’ fault. They have to follow Center for Disease Control guidelines, and when I contacted the CDC they basically said “sorry, that is policy for now, but it may change in the future”. But I have to wonder, is this policy driven by science and sound thinking or by fear of litigation? After all, there have been recent lawsuits against Blood Services by recipients who tragically contracted HIV via contaminated transfused blood. (I am not going comment on the validity of these lawsuits, frivolous litigation is a subject unto itself, um, oops, I guess I just did comment on it). I believe that the CDC has done a serious disservice to those most needing help by literally throttling the blood supply. Put it this way, if a leukemia patient was offered platelets and told that “the donor comes from a country where 100 people (.00016% of the population) died from contaminated cows, but there is no evidence that the donor did indeed ingest a Mad Cow, the odds are less than 0.01% that he did, and even if he did there is no evidence to suggest that the disease would be passed on to you, so do you want the platelets?”, what do you think the patient would say? Ironically, the Bone Marrow Registry does just this; although I can no longer give blood, I am still listed in the National Registry, and if I am ever found to be a match, the potential recipient will be given the choice of whether or not to accept my marrow; that makes lots of sense to me.
So why bring this up now? The US has its first mad cow (up in Washington State). Thousands of pounds of beef have been recalled in 8 states, the public is starting to panic, Japan has already banned US beef imports, and health officials are torn between the need to contain the potential risk and the fear of crippling the $40 billion a year beef industry (the impact on the economy and jobs in an election year must be terrifying the administration). But thus far I have yet to see what the CDC plans to do; should everyone living in the US be banned from blood donation too? That would be devastating, and is unlikely to happen. But maybe this new concern could force the CDC to rethink those guidelines that eliminated thousands of donors (including me). I hope so, as soon as they’ll accept me, I’ll be back in line!

6 responses to “Mad Cows or Mad Policy?”

  1. Alex Hubner Avatar
    Alex Hubner

    Very often paranoid makes people forget the good sense. IMHO the mad cow disease is one of the smallest problems in the blood/platelets donation processes. There are so many other things that are statistically more dangerous (such as drug abuse, travel to unknow endemic regions) that it’s really hard to believe this is happening there. Hope this decision reaches an end with good sense and care.
    As for the Mad Cow disease, you might take a look on this nice Flash animation used in a campaing that the NGO I work for (Friends of The Earth International) is participating:

  2. David Schmidt Avatar
    David Schmidt

    It was interesting to view the United States’ response to the single case in Canada…

  3. seancorfield Avatar

    I found the whole BSE scare to be bewildering… I lived in England at the time… 3.7 million cows were slaughtered even tho’ only about a quarter of a millions cows were infected. The world banned British beef despite repeated claims of its safety. The US system is much safer since (a) infected animals are not ground up and fed to other animals (as was the case in Britain) and (b) the brain / spinal cord never enter the food chain in America. Yet, everyone is already banning American beef…

  4. Steven Erat Avatar
    Steven Erat

    During my 8 hour drive to Baltimore over the holiday weekend, I had the opportunity to listen to a scientific discussion of BSE and vCJD on National Public Radio. One take away message from that discussion was that US testing for BSE is flawed and very weak, and when the US implements improved measures and broader testing, comparable to what England is currently doing, then the US will very likely find a much increased rate of BSE in the bovine population. It does seem very ironic that the Red Cross would enforce an extreme policy to deny so many leukemia patients the life sustaining transfusions from aphaeresis donors that have an extremely low risk of CJD, and yet the US testing for BSE seems to be impotent, if not outright deceptive, and those regulations that govern the testing were very likely weakened intentionally by the beef industry lobby on the policy makers. I think that when the true levels of BSE are determined for the US that the Red Cross would be forced either to carry over the regulation they have in place for countries known to have a high risk for BSE and start denying all US donors or be forced to modify their policies to reflect the true risk of getting CJD by eating beef products, which is very low.
    I think the Red Cross policy on CJD is just CYA, due to fear of litigation as Ben suggests, and I’m often very annoyed by the layers of spin that the popular media adds to the reporting and debate of scientific or medical research. Although I don’t know much of the internals about how public policy is made, how lobbyists impact legislation, or how spin is actually generated, I do know a lot about the scientific method and peer review. I put a great deal of trust in primary resources of scientific information that are the ultimate foundation of policy and law in this regard, but without (much of) the spin. If you question any of my opinions, or question the weighted risks that Ben suggests (i.e. “to date the number of Mad Cow victims worldwide is estimated at under 150, compared to over 20,000 leukemia related deaths in 2003”), or question any of the sound bytes you get from CNN, then I suggest you get the facts by researching it yourself with the publicly available interface known as PubMed or Medline, developed by the National Library of Medicine. These resources allow the public to gain access to the primary research and reviews done by scientists around the world in public, private, and academic institutions. I also encourage you to find news sources known for integrity and objective reporting, such as NPR and PBS.
    Here are a few of my suggestions on where to get started, filter out the spin, and stop the madness:

  5. Rick Bolin Avatar
    Rick Bolin

    Ben, Thanks for your story about irrational fears and overreactions. Thanks, too, for your generosity and patience as a blood and blood products donor. It’s a shame that more people aren’t as willing to submit to the discomfort and inconvenience of the donation process, in spite of the lifesaving benefits that this gift yields.

  6. Robert Barrett Avatar
    Robert Barrett

    I too was a long time donor. Then, several years ago I was informed that I could never give again. The reason was I had an elevated level of something or other in my system (can’t even remember now what it was) that the Red Cross said was a precursor to hepatitis. I had my blood tested three times by an independent lab where a friend worked. Yes, it was elevated. He suggested I visit my doctor (who said "Go home, you’re not sick.") and also said the Red Cross throws away more good blood than you can imagine.
    I few years later I received a letter from the Red Cross stating they would now accept my blood. Since that time I’ve been a regular donor. In fact, I’m donating this Saturday; my 64th pint!
    I’m CMV negative so they use my blood for the little babies at Arkansas Children’s Hospital. What better reason to give!?!

Leave a Reply