Of the Red Cross, Communication, and My Good Blood Turned Bad

3 December 2020 ☼ PersonalCommentaryMiscellaneous

So last month I gave blood as part of a Red Cross blood drive. I am one of those weirdos who actually likes giving blood. I don’t have a bad enough reaction to needles to fear the process (I’ve done it often enough to know that the initial finger prick is the worst part); I get a little woozy afterwards, but nothing too bad; and mainly I like sitting around afterwards, feeling virtuous while scarfing down cookies. As a friend of mine once said: It’s one of the few cases where you can and should get a cookie!”

My liking the process is influenced by my not having been eligible to do it for so long. In the early 2000s, when there was a lot of concern about Creutzfeldt-Jakob disease in western Europe, I was off the donation list while traveling back and forth to London for work. While that restriction was in place I joined an experimental HIV vaccine research study at Emory University (I got the placebo, but the vaccine itself didn’t pan out, sadly). Which meant that I was then off the donation list for participating in experimental research. When that restriction lifted, I kept failing out because my hemoglobin was too low. I think 2020 was the first year that I was able to donate three times.

It turns out determining whether or not the Red Cross wants your blood is harder than it looks. You are probably familiar with the rule that men who have had sex with men have to defer donation—for most of my donating history it’s been for life; in 2015 the restriction was down to one year; it’s apparently now down to three months. I’m not sure how well-known the defer-three-months policy change is; I suspect that, since the defer-for-life policy was in place for three decades, most people assume it’s still the rule.

(The followup question you might have is: what about people who are transgender or gender-unconventional? Basically, the Red Cross’s rules state that, for the men-having-sex-with-men deferral, they rely on gender self-identification: so a trans man having sex with men might get hit with the deferral and a trans woman having sex with men might not. You might also get deferred depending on individual medications—it wasn’t clear to me whether the kinds of medicines often prescribed to aid in a physical transition usually show up on that list—or after major surgery. In sum, if you’ve donated before and then changed how you describe yourself, you may need to talk to a Red Cross counselor to affirm your eligibility, but if you haven’t had recent significant surgery and you’re not a man having sex with men [or a woman having sex with men who have sex with men], there don’t seem to be any major hurdles. Double-check me on this. Here are the Canadian and Australian equivalent rules, if you’re curious.)

I can understand, if you were on the defer-for-life list for years on end for reasons that seemingly had more to do with mid-’80s prejudices etched into bureaucratic inertia than with any real medical risk, why you might feel a little cranky about helping out the Red Cross. But I do think it helps people. Also, the cookies. And furthermore, right now it’s a surefire way to get a COVID-19 antibody test; I haven’t had any symptoms, so it’s been hard for me to justify getting tested (I know this says a lot more about the USs terrible approach to testing than it does about me), but via blood donation I’ve tested negative for COVID antibodies twice.

Also, your blood may be even more useful than you would first think. While I was strapped to the chair, ready to donate, in August, the nurse-administrators had a quick discussion between themselves about my being CMV negative. What’s that mean?” I asked. It means I’ve never developed antibodies to cytomegalovirus, one of those viruses that swim around in the general population and don’t cause much in the way of known problems except in special cases, and small children are one of those cases. So blood donated by people with CMV antibodies can’t be used to help premature infants who need blood transfusions. That means that if you’re CMV negative, the Red Cross looooves you. They’ll even send you a special little cooler bag that says Heroes for Babies” on it! (Dear Red Cross, I would very much like a T-shirt or sticker or somesuch that says THIS MACHINE HEALS BABIES.)

But there’s yet more that could be going on with your blood, as I found out today.

Turns out the Red Cross tests for not just HIV and CMV and COVID but a few other things, including Zika, hepatitis A and B, and something called HTLV-I and HTLV-II. The HTLV stands for human T-lymphotropic virus. HTLV-I is apparently associated with forms of leukemia and multiple sclerosis; HTLV-II hasn’t been blamed for anything as of yet. Again, like CMV, we’re talking about viruses that can hang out for a lifetime without causing any symptoms, but under certain circumstances they can be dangerous, and the Red Cross would rather not inadvertently spread them to a patient. (Y’all might not remember this, but acquiring HIV through blood transfusion was a known, and well-publicized, potential tragedy in the mid-1980s: both Arthur Ashe and Ryan White were killed that way.)

So if your blood tests positive for antibodies to HTLV-I/II (they’re tested together, and you don’t get to find out whether it was I or II or both you tested positive for), you’re kicked out of donation eligibility. This holds even the Red Cross’s own follow-up test comes up negative, as the Red Cross will patiently explain to you in a multi-page letter. It is highly unlikely that you are infected,” the Red Cross says, cautiously, however, you should share these results with your doctor.”

I did some research. Highly unlikely” is putting it mildly. Apparently the initial HTLV-I/II test is a classic case of a test so sensitive it produces lots of false-positives (Type I errors, for those of y’all who, like me, don’t remember your Bayes), and so about 5% of people who test positive on the HTLV-I/II test actually have HTLV-I/II.

Even so, getting a positive result has meant getting kicked off the donation list since 1988 (for HTLV-I; HTLV-II testing wasn’t added until 1998). Apparently in the mid-1980s HIV was known as HTLV-III, even though the virological community eventually concluded that HIV and HTLV-I/II are separate. That probably helps explain the blanket ban, and why that Red Cross multi-page letter goes to great lengths to assure me that I’m not dealing with a virus that causes AIDS.

The upshot for me is that I can no longer be of service to sick babies. But! There is a new rule. And by new” I mean the FDA just got around to publishing its final recommendations in February. The new rule says: wait six months, get tested again, and if you turn up negative for HTLV I/II, you’re in the clear. I called the Red Cross and a counselor reassured me that they’ll call me in May 2021 or when the re-entry service (currently suspended due to COVID-19) starts up again, whichever comes later.

The Red Cross counselor also mentioned that the deferral time after getting a tattoo or a piercing has also been reduced to three months, rather than a year. (And the deferral only applies to certain states.) I didn’t know this, and I am, it seems, the kind of person who thinks way too hard about blood donation eligibility.

This whole episode illustrates the difficulty of the communication problem the Red Cross has on its hands. On the one hand, they want as many people to donate as possible, especially since they know better than their donors how many potential limitations there are. On the other hand, they want to be very careful with the actual blood being donated. On the other other hand, broadening the pool of interested donors means possibly having to say more often, Sorry, you actually don’t qualify to be a baby-healing cookie-eater,” a message that doesn’t feel good to receive. (If you fail the hemoglobin test, the Red Cross staff will often tell you you’re eligible for cookies anyway, but I’ve never taken them up on that offer.)

People have to decide for themselves whether or not to give the process of blood donation the benefit of the doubt. It makes sense that the balance between enforcing slow-to-change FDA rules, reaching out to potential donors, and keeping track of what might or might not be dangerous to transfusion recipients would be imperfectly reached; unfortunately that means that would-be donors have to do some of the legwork, to figure out if they qualify or not. (The Red Cross mobile app actually works quite well, and over time it might incorporate more information—right now the app has my COVID-19 antibody results highlighted but not my CMV-negative status, and is still asking me to schedule an appointment.) I wrote this in part because online I found very little non-technical information about deferral due to the HTLV-I/II test, in hopes of helping inform someone who runs into the same set of problems.

I still want to donate. (And now I want y’all to donate, to make up for my slack butt and its sudden possibly-for-life deferral.) I have, admittedly, the luxury of never having felt that any of the tests that rendered me ineligible were judgments on me as a person. But I still think the benefits of blood donation outweigh the indignities. I mean, the best-case scenario is that you end up wounded and smug, wearing a large bandage on your arm and stuffing your face with Nutter Butters. Dignity is sort of beside the point by then.