Paul's Internet Landfill/ 2015/ Big Changes to the Blood Questionnaire

Big Changes to the Blood Questionnaire

To commemorate my 99th blood donation, Canadian Blood Services gave me an interesting present: a revamp of their blood donation questionnaire. I had heard rumours they were going to do so; Canadian Blood Services had a booth at the Tri-Pride festival (!), and one of the boothminders there assured me they were looking into the question regarding donors of African descent. I tried to follow up on this rumour and got nowhere, so I assumed that I had been misled. Not so!

Some of the changes are exciting, some are completely predictable, and some are bizarre. Overall I am happy with the changes, which I will detail in the sections below.

European Donor Deferral

This set of questions has to do with variant Creutzfeldt-Jakob disease (vCJD), a terrible brain-wasting ailment. It is thought to be contractable by eating cattle infected with Bovine Spongiform Encephalopathy" (BSE), better known as Mad Cow disease.

In the 1980s there was an outbreak of BSE in European cattle. France and England were particularly hard hit. Thus, Canadian Blood Services was forced (no doubt kicking and screaming) to defer donors from these countries, because for all we know variant Creutzfelt-Jakob disease might be transmittable via blood donation. Potential donors were deferred if they had spent time in England, France or the rest of Europe. Later Saudi Arabia was added to this list, because somebody contracted vCJD there.

Over the years I have noticed the questionnaire restrictions get more and more narrow, so that more and more donors from England and France would be able to donate blood. I think that process is now complete. Question 8e of the questionnaire used to read:

Have you spent a total of 5 years or more in Europe since January 1, 1980?

It now reads:

Have you spent a total of 5 years or more in Europe from January 1, 1980 through December 31, 2007?

This must be a huge relief to Canadian Blood Services, because it means that people who move to Europe from 2007 onwards, stay five years, and then move back will still be able to give blood. I have always felt that CBS cares a lot about donors of European descent -- a large fraction of their donor base originates from Europe -- and thus I am not surprised to see this change at all.

There is another rewording of a vCJD question in the questionnaire, but it is minor. The old Question 12 used to read:

Are you aware of a diagnosis of Cruetzfelt-Jakob disease among any of your blood relatives (parent, child, sibling)?

and now it reads:

Do you have a biological (blood relative) parent, child or sibling who has a diagnosis of Cruetzfelt-Jakob disease?

These two questions are not exactly the same, but they are pretty close.

Chagas Disease Deferrals

Chagas disease is a blood-borne parasite that is spread by insects called triatomine bugs. People are sometimes infected as children without knowing it, and carry the disease throughout adulthood.

There is a question about Chagas disease in the cubicle section of the questionnaire (as opposed to the "high-risk" questions):

Have you ever had ... Chagas' disease, babesiosis or leishmaniasis?

There is a small chance that Chagas disease can be spread via maternal transmission from mother to unborn child. Exact transmission rates are unknown, but my previous research suggested they were in the range 2-10%.

The question (Question 14) used to read as follows:

a) Have you spent a total of 6 months or more in a continuous period in Mexico, Central America, or South America?

b) Were you born in Mexico, Central America, or South America?

c) Was your mother or grandmother born in Mexico, Central America, or South America?

I found this obnoxious for two reasons:

The questions are largely the same after the revamp, but clearly somebody at Canadian Blood Services has recognized the image problem these Chagas questions have led to. Question 14 is still in the high-risk section, but in the new questionnaire the box containing the question is shaded dark green, not grey like the other high-risk questions. That suggests CBS is trying to make this question seem distinct than questions about illegal drugs and sex with prostitutes.

The content of question 14c has also changed slightly:

c) Was your mother or maternal grandmother born in Mexico, Central America, or South America?

By changing "grandmother" to "maternal grandmother", the question confirms that CBS is worried about maternal transmission risk.

I still find this set of questions obnoxious, but it is comforting to know that CBS is at least aware of the problem. If they ever start caring about donors of Latin American descent (and they should, given how many immigrants from Latin America we are blessed with) then maybe they will change the criteria in some meaningful way that keeps the blood supply safe.

Sex Workers

Question 25 used to be the butt of many jokes:

At any time in the last 12 months, have you paid money or drugs for sex?

The joke used to be that paying money or drugs for sex is also known as "dating". Canadian Blood Services might have wanted to disrupt the joke, or may have wanted to further stigmatize sex workers, so they made the question more explicit:

In the last 12 months, have you had sex with a sex trade worker or anyone else who has taken money or drugs for sex?

I suspect that Canadian Blood Services is trying to use words less harsh than "prostitute", but I am not terribly happy with the change. There are lots of kinds of sex workers, and not all of them engage in the Canadian Blood Services definition of sex with their clients. Strippers can be considered sex workers. So can BDSM dominatrixes. Maybe the argument is that these people are not sex trade workers?

As a side note, many of the high-risk questions have dropped the "At any time" from the beginning of their statements.

African Deferrals

The deferral on donors from Africa (supposedly for a rare variant of HIV called HIV-1 Type O) was the one that got under my skin the most. There have been some big changes to this question. It used to read:

a) Were you born or have you lived in Africa since 1977?

b) Since 1977, did you receive a blood transfusion or blood product in Africa?

c) Have you had sexual contact with anyone who was born in or lived in Africa since 1977?

It now reads:

a) Were you born in or have you lived in Togo or Cameroon since 1977?

b) Have you had sexual contact with anyone who was born or lived in Togo or Cameroon since 1977?

This set of changes is significant for many reasons:

My guess is that this question is not about HIV-1 Type O any more, although I have not tracked down the reasoning for this question yet. It is not nice that potential donors from Cameroon and Togo are being thrown under the bus, but at least in the case of Cameroon it does not surprise me. HIV is thought to have originated in Cameroon, and most of the weird variants of the disease come from there, so it is plausible that if there is a new undetectable strain of HIV it might well be Cameroonian in origin.

Overall I think this question is a vast improvement over the previous version.

Self-Screening Sticker

One unexpected change in the donation procedure does not have to do with the questionnaire itself, but rather with a sticker you used to affix to the questionnaire once the nurse had left the room. I do not have the exact wording of the question, but it was for self-screening:

You had two possible stickers to affix on the questionnaire. One corresponded to "YES" and one corresponded to "NO". If you chose "NO" then supposedly your blood would not be used, but nobody would out you. The stickers were encoded with numbers so it would not be immediately obvious which sticker you chose, but in practice there were only a small number of patterns corresponding to YES and NO, so this was pretty flimsy security.

That sticker procedure has now been dropped. I was told that it was because nobody was choosing "NO". That's fair enough, but I am not sure I am entirely comfortable with this change. If even one person gets infected with tainted blood because some idiot used CBS for an HIV test without deferring their donation later, there could be big trouble.

Conclusions

These changes are pretty significant, and they address some of the concerns I had about Canadian Blood Services being geographically bigoted. I think they are still geographically bigoted (especially with respect to Latin Americans) but clearly there has been some positive improvement. At the very least, I am glad that somebody at Canadian Blood Services was aware that there was a problem.

Overall I am happy with the changes. Maybe the primary lesson I draw from these exercises is just how unnecessary I am to social change. Other than my Ignite Waterloo talk and some angry blog posts, I did nothing to advocate for changes to these questionnaires, and yet change happened anyways. That's good news, because it means my involvement is irrelevant.