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Ignite 12 Followup: "Does Canadian Blood Services Have an Image Problem?"

In my June 12 Ignite Waterloo presentation, I made a number of claims and statements that deserve elaboration. The purpose of this blog post is to point readers to some of my sources, and to elaborate on nuances that I glossed over during the presentation.

Unlike the rest of this blog, I release this blog entry, the associated slides, and their sources under a Creative Commons licence:

Creative Commons Licence
This work by Paul Nijjar is licensed under a Creative Commons Attribution-ShareAlike 3.0 Unported License.

You can download the slides in PDF format and the sources as a zipfile . There are potential copyright problems with two of the slide sources: the slide that shows the Record of Donation (which I downloaded and modified without permission) and the "Be Nice to Me" graphic Nice.jpg (which is used with permission, but which does not have an explicit licence compatible with CC-BY-SA).

UPDATE: The talk has been posted to YouTube:

This document contains many hyperlinks to external websites, many of which point to PDF files. I expect that many of these hyperlinks will go stale over the years. I will update hyperlinks upon request. (Providing me with the new hyperlinks will help a lot with this.)

Links to the website are particularly complex (and probably fragile). You may be able to find the article I intended by looking for the title of the article (which is usually the hyperlink's name).

I would like to thank Ignite Waterloo for giving me the chance to speak at their event, and Canadian Blood Services for putting up so much of their material (especially their board minutes) online. The FDA also put valuable information online for me to use. Without such transparency this detective work would have been infeasible for me.

  1. Ignite 12 Followup: "Does Canadian Blood Services Have an Image Problem?"
    1. Record of Donation
    2. Men Who Have Sex With Men
    3. HIV-1 Group O and Africa
    4. Variant Creutzfeldt-Jakob Disease and Europe
    5. Chagas' Disease and Latin America
    6. Two Image Problems
    7. So What?
  2. Sidebar!

Record of Donation

The screening questionnaire used by Canadian Blood Services is called the "Record of Donation". My versions of the questions come from the 2011-09-01 version of this questionnaire, which has already been removed from the website. The current version is the 2012-11-01 version, which will shortly be replaced with the 2013 one that allows men who have had sex with men to donate. When that link goes stale, you may be able to find a copy on the website by looking in the "Record of Donation" section.

I modified the PDF that was provided on the website by removing the "Sample Only" text (which was naughty of me, but I did not think it caused any harm given my other markup), and adding red boxes around the different classes of questions.

The term "Cubicle Questions" is my own. I do not know the official name for these questions.

The term "Personal" or "High Risk" questions are terminology that have been used by screening nurses when they went through this part of the screening questionnaire with me. During my most recent donation (after my talk) I saw a poster that referred to these questions as "Verbal" questions.

Men Who Have Sex With Men

I claimed that the infamous "Men who have sex with men" question (which in the 2011-09-01 version of the questionnaire was Question 19: "Male Donors: have you had sex with a man, even one time since 1977?") gets all the media attention and press. This is not quite true, but it does get a lot of attention both in Canada and elsewhere.

In its What You Must Know to Give Blood brochure, Canadian Blood Services defines sex as any of the following actions:

Canadian Blood Services commissioned a study in 2006 examining this issue, known as the McLaughlin Report . This study, "MSM Donor Deferral Risk Assessment: An Analysis using Risk Management Principles" looked at the probability of increased infections via blood transfusion if Canadian Blood Services were to change its criteria to no deferral, a 1 year deferral, a 5 year deferral, or a 10 year deferral for men who have had sex with men.

This process may have started as early as the CBS board meeting of 2004-09-09, when Laurie Arron of Egale Canada made a presentation before the board. There was followup discussion of this during the 2004-11-10 board meeting.

During my talk I noted that the men who have sex with men policy is changing. In particular, it is changing from a lifetime deferral to a five year deferral (which was an option examined by the McLaughlin Report), as of July 22 2013. According to Héma-Québec (the organization that administers blood donation in Quebec) this was due to a joint submission by Canadian Blood Services and Héma-Québec to Health Canada (which makes the final decision and sets the final rules).

Although I muddled the wording during my talk, I also noted that this policy was "personally relevant". In the interest of full disclosure: although I am still eligible to give blood, I am not straight. Please keep this in mind when making your jokes about how this rule change means that gay men can give blood, so long as they are lonely and pathetic. My feelings on the MSM deferral are complex, and I just as I did not want to focus on that deferral in my talk, I do not want to focus on it in this blog post.

Here are some additional resources from the Canadian Blood Services website:

HIV-1 Group O and Africa

This section of the talk concerns question 31:

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?

I claimed that this question was more about Cameroon than about Africa, because in 1994 researchers discovered a new strain of HIV called HIV-1 Group O. I based this on some citations from academic papers. For example, the paper "Unequal Detection of HIV Type 1 Group O Infection by Simple Rapid Tests" by Gautheret-Dejean et al (Clin Infect Dis. (2008) 46 (12): 1936-1937. doi: 10.1086/588561) cites the following 1994 paper as identification for HIV-1 Group O (which I have not read):

Charneau P, Borman AM, Quillent C, et al. Isolation and envelope sequence of a highly divergent HIV-1 isolate: definition of a new HIV-1 group. Virology 1994;205:247-53.

The Center for Disease Control in the United States published a letter in 1996 that identified a case of HIV-1 Group O in America: Identification of HIV-1 Group O Infection -- Los Angeles County, California, 1996 . This letter cites a much earlier paper (which I have also not read):

De Leys R, Vanderborght B, Vanden Haesevelde M, et al. Isolation and partial characterization of an unusual human immunodeficiency retrovirus from two persons of West-Central African origin. J Virol 1990;64:1207-16.

In either case, it was known by 1994 that HIV-1 Group O was a different strain of HIV, and that it could not be reliably detected by other HIV-1 tests. It was also known that Cameroon was a primary country in which HIV-1 Group O infections were found.

The HIV virus has many mutations and strains. The two major types are HIV-1 (believed to have come from chimpanzees and gorillas) and HIV-2 (believed to have come from the sooty mangabey monkey). Each of these types are divided into groups, and these groups are further divided into subtypes.

Of the HIV-1 groups, HIV-1 Group M ("major") is by far the most prevalent, followed by the relatively rare HIV-1 Group O ("outlier"), very rare HIV-1 Group N, and extremely rare HIV-1 Group P. All of these groups are found in Cameroon.

The paper Update on HIV-1 Diversity in Africa: A Decade in Review (AIDS Rev. 2012; 14:83-100) by Lihana, Ssemwanga, Abimiku, and Ndembi provides a good overview of Cameroon's role as an epicenter of HIV biodiversity. This paper cites references that claim that between 10000 and 20000 people in Cameroon might be infected with HIV-1 Group O. That number is very large in absolute terms, but is a small percentage of the total HIV infections in Cameroon (the paper estimates 1-5% of infections are HIV-1 Group O) and tiny as compared to Cameroon's population (which as of this writing Uncle Wikipedia claims is over 19 million).

I then talked about a 1996 rule implemented by the Food and Drug Administration (FDA) in the United States. This rule indefinitely deferred donors from Cameroon and its seven neighbouring countries (Central African Republic, Chad, Congo, Equatorial Guinea, Gabon, Niger, and Nigeria). Later in the talk I claim that the FDA changed its rules based on new information (including FDA-approved tests that screen for HIV-1 Group O). The key document here is Recommendations for Management of Donors at Increased Risk for Human Immunodeficiency Virus Type 1 (HIV-1) Group O Infection, issued by the FDA in August 2009. This paper goes through the history of the question, refers to the 1996 policy that had been implemented, and lists updated criteria for the question:

I also made a claim that Canada adopted the same rule as the FDA. I have no concrete evidence for this, but there is some good circumstantial evidence to suggest that the policies are related:

Even if it is not true that Health Canada followed the lead of the FDA for this screening question, and that it somehow developed the same screening criteria as the FDA, times have still changed, and the evidence that the FDA used to change its screening criteria applies to Canada as well. We do know that Question 31 on the Canadian Blood Services questionnaire has something to do with HIV-1 Group O, because the Indefinite Deferrals page on the website says so.

In the talk I claimed that at some point Canada changed the wording of the question from listing the eight countries to "Africa", even though the deferral applies to only those eight countries, and does not apply to other countries in which HIV-1 Group O has been found (in particular the five additional countries identified by the FDA). These claims also require evidence.

Unfortunately, I have no proof that the question ever referred to anything other than "Africa", other than my memory. The earliest Record of Donation I was able to find was from 2006-05-15, and by that time the wording of the question had already changed. I was also unable to find any discussion of this wording change in the Canadian Blood Services Board of Directors meeting minutes (which is telling, given the amount of discussion that has taken place concerning other issues like variant Creutzfeldt-Jakob Disease and West Nile Virus).

However, I do have evidence that the deferral applies only to Cameroon and its seven neighbours:

My next set of claims challenged the motivations for Question 31. According to the FDA, this question was put in place because there had been no approved screening test for HIV-1 Group O in 1996. I showed two examples (there may be more) of blood screening tests that had been approved by both the FDA and Health Canada.

The first test was "BIO-RAD Genetic Systems (TM) HIV-1/HIV-2 PLUS O EIA". This is the test mentioned in the 2009 FDA report. It was approved by the FDA for use in the USA in 2003, as documented on the FDA approval website for Genetic Systems HIV-1/HIV-2 Plus O EIA . This website contains links to an insert for the product, and the approval letter (both of which are worth a look).

The second test was "ABBOTT PRISM HIV O Plus Assay", which was approved by the FDA on Sept 18, 2009, as documented on the FDA approval site for ABBOTT PRISM HIV O Plus . This test is of particular interest because I have reason to believe that the "Abbott PRISM" family of equipment and tests is used by Canadian Blood Services. In the 2006-12-14 CBS board meeting minutes, the following statement came up with respect to Chagas' disease testing:

Graham Sher reported that the Scientific and Research Advisory Committee discussed whether Canadian Blood Services should perform any testing, however, it was noted that Canadian Blood Services does not have any Ortho equipment in its laboratories. The Abbott platform is used for Canadian Blood Services' routine tests and we are in discussion with Abbott regarding options with respect to Chagas.

This is further confirmed in the 2007-03-27 CBS board meeting minutes (also in the context of Chagas' disease):

Canadian Blood Services will be meeting with Abbott to determine timelines for testing on the Prism platform.

This suggests to me that it is technically feasible for Canadian Blood Services to use the Abbott PRISM HIV O Plus Assay. There may be other reasons (such as cost) why Canadian Blood Services might not wish to, but the original reasoning for Question 31 (that there did not exist tests for HIV-1 Group O) no longer applies.

In addition to listing approval dates for these tests by the FDA I also listed Canadian approval dates. These are difficult to hyperlink, but the Health Canada website provides a search tool for medical device approvals which allowed me to look up approvals. The "GENETIC SYSTEMS HIV-1/HIV-2 PLUS O EIA" test with device identifiers 32588, 32589, and 25256 has licence number 60386, and was approved on 2002-09-03 (earlier than in the US). The "PRISM SYSTEM - HIV O PLUS" with device identifier 3L68-68 has licence number 63212, and was approved on 2012-08-14.

Since the Abbott test was only approved in August of 2012, it may be reasonable to think that Canadian Blood Services has not changed its screening tests yet. (This is not universally true, however: CBS employed NAT testing for West Nile Virus before it had received Health Canada approval, as indicated in the 2006 version of the "What You Must Know to Give Blood" brochure (now offline) and the Nucleic Acid Amplification Testing for Hepatitis C question and answer page.)

Variant Creutzfeldt-Jakob Disease and Europe

The next section of my talk concerned Question 8:

a) Since 1980, did you receive a blood transfusion or blood product in the United Kingdom, France, or elsewhere in Europe?

b) Have you spent a total of 3 months or more in the United Kingdom (England, Northern Ireland, Scotland, Wales, the Isle of Man, or the Channel Islands) from January 1, 1980 through December 31, 1996?

c) Have you spent a total of 3 months or more in France from January 1, 1980 through December 31, 1996?

d) Have you spent a total of 6 months or more in Saudi Arabia from January 1, 1980 through December 31, 1996?

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

This question concerns variant Creutzfelt-Jakob disease (vCJD). The common terminology for this is "mad cow", but that is not quite accurate: mad cow disease in cows is called "Bovine Spongiform Encephalopathy" (BSE). vCJD is a mysterious disease; as far as I know the link between eating cows infected with BSE and developing vCJD has still not been proven. These diseases are caused by prions -- foreign proteins that infect their host by refolding the proteins in the host's brain. vCJD is a fairly horrible disease: it affects people with a median age of 28, and causes dementia and death within two years.

The above numbers are from the UK Blood and Transfusion Services position paper, which provides a good overview of the disease and its history. A second good resource is provided by the Center for Disease Control factsheet .

In absolute terms, the total number of cases of vCJD have been small, according to the Center for Disease Control factsheet:

Since variant CJD was first reported in 1996, a total of 227 patients with this disease from 12 countries have been identified. As of June 28, 2012, variant CJD cases have been reported from the following countries: 176 from the United Kingdom, 27 from France, 5 from Spain, 4 from Ireland, 3 from the United States, 3 in the Netherlands, 2 in Portugal, 2 in Italy, 2 in Canada and one each from Japan, Saudi Arabia, and Taiwan. Two of the three U.S. cases, two of the four cases from Ireland, one of the two cases from Canada, and the single case from Japan were likely exposed to the BSE agent while residing in the United Kingdom.

The first thing to notice from this breakdown is that almost all of the cases of vCJD have occurred in the United Kingdom and France. The second thing to note is the tiny number of cases from Saudi Arabia. According to the Canadian Blood Services press release Canadian Blood Services to Expand Deferral Policy for vCJD, a total of three cases of vCJD have been linked to Saudi Arabia: the Saudi case, a Canadian case, and a US case.

In the talk I claim that Question 8e does not refer to all of Europe, but just Western Europe. This is indicated on the Canadian Blood Services vCJD Travel Deferral document. This page lists the specific countries in Western Europe for which the indefinite deferral applies: Belgium, Luxembourg, Spain, Germany, Italy, Switzerland, Republic of Ireland, Netherlands, Austria, Liechtenstien, Portugal, and Denmark.

It is worth noting that there are several European countries included in the deferral that have never had a reported case of vCJD: Belgium, Luxembourg, Germany, Switzerland, Austria, Liechtenstein, and Denmark. This was the basis for my claim that the indefinite deferral for Europe is not based on where cases of vCJD has been found in humans, but rather where cows infected with BSE may have entered the food supply.

It is also worth noting that the case of vCJD from Taiwan is not (as far as I know) explained away by consumption of UK beef, but Taiwan is not a deferred country.

After discussing the vCJD deferral areas and how they related to eating mad cows, I talked about a change to Question 8 from 2005. I claimed that this change allowed more people from the UK and France could give blood, and cited the Canadian Blood Services website for the reasoning, from the Geographic Deferrals page (emphasis mine):

Health Canada has concluded that deferring donors who had spent a cumulative total of three months or more in the United Kingdom (U.K.) since 1980, or if they haev spent a cumulative total of five years or more in Western Europe outside of the U.K. or France since 1980 to present, balances the safety of Canada's blood supply with the need for donors.

This excerpt states that Health Canada (and not Canadian Blood Services) believes the tradeoff balances the safety of the blood supply with the need for donors. I believe (although do not know) that Canadian Blood Services officially endorses this statement, but I suspect that the unofficial attitude Canadian Blood Services has towards this deferral is somewhat different, and quite illuminating.

To understand why I believe the 2005 change is so significant, it is helpful to understand the criteria of the deferral and its long and convoluted history. The deferral is somewhat difficult to discuss because the qualifiers contain two time periods: "spent a total of 3 months or more" and "from January 1, 1980 through December 31, 1996". I do not know the proper terminology to use in discussing these time periods, so I will call the first ("spent a total of 3 months or more") the presence threshold, and the second ("from January 1, 1980 through December 31, 1996") the risk window. We can then re-examine the deferral question using these terms:

The "vCJD Travel Deferral" page linked above provides a short history of changes made to this question, but does not describe the changes made in 2001 or 2005. Here is my understanding of the timeline of the geographic deferrals:

In my mind, the 2005 change stands out, because it represents the one modification that permits more people to donate blood, not fewer. Taken by itself, that may not mean much, but I believe this is an important indicator about the attitude Canadian Blood Services takes towards the vCJD deferral, and in particular towards its donor base from the United Kingdom and France.

Firstly, the vCJD Travel Deferral page states that this deferral is to be reviewed annually. I have not seen this claim made for any other deferral on the questionnaire (and in particular not for the deferrals in Question 31). That in itself seems significant.

Secondly, there have been many many statements of concern made about this deferral in Canadian Blood Services documents:

This is all circumstantial evidence, but to me it seems clear that Canadian Blood Services was reluctant to implement this change, that they care a great deal about the influence of this screening on the donor supply, and that they are willing to loosen the restrictions of this screening as soon as it would be feasible. None of this is necessarily bad, but it provides a stark contrast to the approach Canadian Blood Services has taken to HIV-1 Group O screening.

Chagas' Disease and Latin America

My final case study concerned Question 14:

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?

There are many fascinating aspects to this question, but because of time restraints, I focused on only one: its migration from being in the "cubicle question" section to becoming a "high risk" question. This change happened sometime between 2009 and 2011 -- a copy of the 2009-04-01 Record of Donation I have archived lists the question as Question 8 in the cubicle section, and the 2011-05-01 version of the form moves the question to Question 14 in the high-risk section. I looked for a concrete date of the change to this question, but as of this writing I have been unable to find one.

The screening question itself is relatively new. According to the "Reducing the Risk of Transfusion-transmitted Chagas Disease" document linked below, Canadian Blood Services introduced these screening questions on 2009-02-09.

This set of questions screens for a disease called "Chagas' disease", which is caused by a blood parasite called Trypanosoma Cruzi, often written as T. cruzi .

Here are some fact sheets on Chagas (from which I gathered most of the information below):

The T. cruzi parasite is most often transmitted by biting insects called triatomine bugs, which often go by the adorable name of "kissing bug": first they kiss you (sucking your blood in the process) and then they poop on you. The T.cruzi parasite lives in kissing bug poop, so when people scratch their bug bites, they sometimes rub bug poop into the wound, which gives T. cruzi access to the bloodstream. Then the fun starts.

The disease has two phases. The first phase consists of a fever. This fever is often indistinguishable from other fevers unless a characteristic facial lesion develops near the bite. This is the stage at which Chagas' disease is most treatable, but because it resembles other fevers (and because it disproportionately affects the poor, who live in housing where kissing bugs can take shelter) it is often not diagnosed until symptoms show up later.

Like syphilis, Chagas' disease is problematic because it remains in the body long after the initial infection. The parasites hang out in heart and internal organ tissue, and many people do not know they are infected at all. But the parasites can damage heart muscles and other internal organs, and decades after a person has been infected they might find themselves experiencing heart attacks or digestive organ failure. The World Health Organization states that up to 30% of patients go on to suffer cardiac troubles, and up to 10% suffer digestive issues.

Chagas' disease is bad news on many fronts. Firstly, many people who have the disease are unaware that they do so. Secondly, it can be transmitted via blood transfusion: the Canadian Blood Services factsheet states that there were two transmissions of Chagas' Disease in Canada, in 1989 and 2000. Thirdly, it is widespread. The World Health Organization factsheet states that 7 to 8 million people may be infected; the Canadian Blood Services factsheet puts the estimate at 8 to 11 million people. This means that it is much more prevalent (by orders of magnitude) than either HIV-1 Group O or vCJD.

Although Chagas' disease can be treated in its early stages, in its chronic stage it is more difficult to cure, and often the best course of action is to treat the symptoms. The health consequences can be serious.

Question 14 screens for risk factors of Chagas' disease: namely living in Latin America, or having a mother or grandmother from there. Question 14 is in the high-risk section of the questionnaire. On the other hand, Question 11e screens for the disease itself:

Have you ever had: ...

e) Chagas' disease, babesiosis or leishmaniasis?

but this question is a cubicle question. Why would the risk factors for a disease be high-risk, but the disease itself be a cubicle question?

Almost all of the questions in the "high-risk" have deferrals associated with them -- donors who are screened by the questions are prohibited from donating blood for some length of time, ranging from six months to indefinitely. Question 14 is the exception to this: donors screened by this question are allowed to donate blood, but certain components are not used. As the Chagas Disease (Trypanosoma Cruzi) page states:

If a donor answers yes to a Chagas risk question, then as a precaution, platelets and frozen plasma for transfusion are not produced from that donor. Donors who answer yes to a Chagas risk question also have their blood tested for the presence of T. cruzi antibodies.

That means that donors screened by question 14 are still allowed to donate red blood cells. (Other countries have different rules; for example Australia allows donors screened for Chagas' to donate only plasma, as documented on their donating after travelling map.

I have not been able to find conclusive evidence of why this question was migrated, but the 2011-03-10 board minutes may provide a clue: the question was not screening out enough donors. In particular, Canadian Blood Services found evidence of blood in donors who had not been screened for Chagas' disease by the question:

For Chagas disease, which is an infection caused by a parasite that can be transmitted by blood transfusion, it was reported that positive results have been obtained in both the selective screening of at-risk donors (donors who answer positively to questions regarding Chagas disease on the Record of Donation) and in the seroprevalence study (testing of donors with no risk factor identified). Nine positive donors have been identified through selective testing while 4 have been identified in the seroprevalence study. The positive results in the seroprevalence study are being further analyzed to better understand the significance of these results and if the selective testing strategy needs to be modified.

Canadian Blood Services conducted a second seroprevalence study, examining donors in Manitoba (!) who reported no risk for Chagas. I am guessing this study was conducted after Question 14 migrated to the high-risk section. The 2011-12-07 meeting minutes describe the structure of the study:

Regarding Chagas disease, the Committee learned that CBS has now tested over 21,000 at-risk donors (donor who answer yes to one of the risk questions) and the number of confirmed positive remains at 12 as was reported to the Board in Q1. Phase 1 of the study completed in September 2011; Phase II is now underway with the testing of 30,000 Manitoba donors that report no risk. Over 5,000 donors have been tested to date and there are yet no confirmed positives. CBS will continue with selective testing strategy.

Apparently, Canadian Blood Services was happy with the outcome of this study, as reported in the 2012-09-12 meeting minutes:

Dr. Christopher Carruthers, Chair of SSEC, provided highlights from the meeting held on September 11, 2012. CBS is in the last few weeks of the Phase II Seroprevalence Study in Manitoba. The data continue to show no positive donors among those who report no Chagas risk. The Chagas strategy will remain unchanged.

My guess is that this means the question (and its positioning in the questionnaire) is here to stay. The Chagas screening questions are not foolproof, however. Sometimes, people lie, as illustrated by the document Re: Responses to Health Canada Inspection of Toronto (67 College Street) 2012-07-17 to 2012-07-20 :

One donation was identified where the responses to the three Chagas Risk questions were recorded on the donor file for the donation made in July 2010 as "NoNoNo" but the sample was tested and was initially and repeat reactive for Chagas. The investigation into this donor file indicated that there were previous donations for this donor where "Yes" had been documented for at least one of the risk questions. This means that this donor would carry forward a Chagas Risk History Code in PROGESA to every donation and a test pending for Chagas would be applied to every donation. As a result, the July donation from this donor was tested for Chagas even though the responses to the risk questions were all ``No'' in PROGESA.

Since this incident occurred in July 2010 -- before the question migrated to the high-risk section -- my suspicion is that Canadian Blood Services believes a lot fewer people will lie now that the question is administered verbally.

The aspect of Question 14 that I find the most fascinating is part c, which asks whether one's mother or grandmother was born in Mexico, Central America, or South America. In effect, this means that the question screens out Latin American donors for three generations. This is because in addition to being transmitted via kissing bugs, the T. cruzi parasite can also be transmitted "vertically" -- that is, from pregnant women to their children. Thus, a donor who has never been to Latin America to be bitten by a kissing bug might have been infected in the womb. Even worse, a donor might have been infected two generations in: from (maternal) grandmother to mother, and then from mother to child. Because Canadian Blood Services does not screen every unit of blood for Chagas disease, it wants to ensure that any blood in which maternal transmission may have been a factor is tested. Unfortunately, this means that any such donor will have their blood screened forever, and that they will never be able to donate every component of their blood.

What is the risk of maternal transmission? Hard numbers are tricky to find, but I came across some citations that suggest that the risk of vertical transmission is 10% or less:

Let's assume that the risk of vertical transmission is on the high side: 10%. Then the risk of transmission of Chagas' disease from grandmother to grandchild would be 1% if the grandmother had been infected. Since not all Latin American grandmothers are infected with Chagas' disease, the actual risk of transmission for any donor based upon being screened out because a maternal grandmother lived in Latin America is well below 1%. It still may make sense to screen donors for presence of T. cruzi in this case, but it is not clear that donors should be unable to donate all components of their blood.

Two Image Problems

Does Canadian Blood Services have an image problem? I claimed that it has two image problems: the image potential donors have of Canadian Blood Services, and the image Canadian Blood Services has towards particular donor demographics.

The questions I explored in my presentation did not come out of vacuums. Each was constructed in the hopes of preventing disease transmission. None of the questions are explicitly racist; the questions I have examined are geographic deferrals, not deferrals based on ethnicity. But it is reasonable to suspect that Question 31 will affect black donors disproportionately, that Question 14 will affect Hispanics disproportionately, and that Question 8 will affect white people of European descent disproportionately. This is important, because when potential donors (particularly donors from ethnic minorities) unfamiliar with the history of these questions look at the questionnaire, the image does not look good.

For one thing, being of African or Latin American descent is "high-risk", lumped in with other activities which are often judged to be immoral, such as illegal drug use, sexually transmitted infections, and prostitution (and male homosexuality, which I suspect is the real reason gay activists want the MSM question removed from the high-risk section: it propagates the perception that men who have sex with men are immoral). It is true that not every question in the high-risk section deals with so-called "immoral" behaviour (such as having surgery or taking clotting factor concentrates), but guilt by association is a factor here, and I think it is important. I believe that Canadian Blood Services is attempting to change the pejorative nature of the "high-risk" questions by calling them "personal" or "verbal" questions, but the groupings of the questions speak for themselves; I do not think that they will lose their negative connotation unless we collectively view drug use and sex work with less moral judgement.

Meanwhile, being of European descent is a cubicle question, not a "high-risk" one. This set of questions is grouped with other activities that tend to be judged less harshly than prostitution or illegal drug use: being pregnant, travelling outside the US or Canada, or having dental work. It is true that there are still some incriminating questions in the cubicle section (such as being to jail or prison) but such questions are outnumbered.

Question 14c, which labels mothers or grandmothers being from Latin America as "high-risk", stands out as being particularly unfriendly. It sends the message that not only is Canadian Blood Services uninterested in donors who have immigrated from Latin America directly, but that second and third generation Canadians of Latin American descent need not apply either.

Another signal of unfriendliness is less obvious, but even more pernicious: Question 31c requires potential donors to keep track of the origin of every sexual partner that they have had, and in particular to track if these partners have been from Africa -- and then, once the question is explained, to know what particular countries these sexual partners were born or have lived. Remember: sex partners from Equatorial Guinea mean indefinite deferrals, but those from Guinea-Bassau or Guinea do not. Sex partners from the Republic of Congo mean indefinite deferrals, but those from the Democratic Republic of Congo do not. None of the other questions regarding sex partners require such geographic mastery, and none have a presence threshold of longer than 12 months.

All of these signals are immediately apparent to those who first look at the questionnaire, without knowing the history behind these questions. When we understand those histories do we change our minds and agree that Canadian Blood Services is friendly and open to minority groups?

Maybe, but probably not. Question 31 is broken, and has been broken for years. It does not do a good job of screening out HIV-1 Group O (because it misses countries in which this group has been found), and it does not take into account the fact that blood screening tests for HIV-1 Group O now exist. The overgeneralization of "Cameroon, Central African Republic, Chad, (Republic of) Congo, Equatorial Guinea, Gabon, Niger, Nigeria" to "Africa" does not help, and neither does the widespread misperception that this question applies to all of Africa because "Africans have AIDS".

The fact that Question 31 is allowed to stay broken (perhaps forever) while Question 8 about Europe will be re-examined annually does not improve perceptions donors have about Canadian Blood Services. The fact that Question 31 generalizes "Africa" while question 8 spells out the regions of the United Kingdom does not improve perceptions. And the fact that the risk windows for the UK and France were reduced for Question 8 while other questions remained unchanged do not improve perceptions.

The fact that Question 14 migrated to the high-risk section even though it is not technically a deferral also leads one to think that Canadian Blood Services is unfriendly to certain groups of people. The fact that this large exclusion is based on cost (because Canadian Blood Services only wants to screen donors for Chagas if they have answered yes to a Chagas question) is understandable financially, but has an additional public relations cost.

I believe that Canadian Blood Services definitely has an image problem, and that potential donors from minority ethnic groups face an unfriendlier welcome than other potential donors. But so what? As long as there are enough donors overall to keep Canada supplied in blood, who cares if those donors are disproportionately white? Blood is blood, and as long as the blood type of a recipient matches that of the donor who cares about the ethnicity of the donor?

Canadian Blood Services cares -- or they should. There are three reasons for this. First of all, Canada continues to grow in ethnic diversity, and more people will be affected by these screening questions. Kitchener-Waterloo has become a major settling ground for immigrants from Columbia, Venezuela, Sudan, Ethiopia, and many other countries affected by the screening questions. People are travelling more, and as Africa grows in economic power it is entirely plausible that more Canadian blood donors will make trips to Africa for business or vacation. They will increasingly come under scrutiny of questions like Question 31.

Secondly, perceptions matter. I believe that Canadian Blood Services is changing the screening criteria for men who have sex with men not because they want blood donations from reformed homosexuals, but because the blood donor demographics they care about are increasingly sympathetic to gay rights. The same argument applies to geographic deferrals as well -- if outrage against questions like the HIV-1 Type O deferral were to grow, then Canadian Blood Services might risk losing donors from its desired demographics.

Thirdly, Canadian Blood Services runs an bone marrow and stem cell registry program called OneMatch. Bone marrow transfusions are quite different from blood transfusions in that finding close matches for bone marrow transfusions is difficult, and ethnicity (or at least how closely potential recipients and donors are related) starts to matter a lot. And sure enough, so-called "ethnic" donors are staying away from OneMatch in droves, as the OneMatch page of the Canadian Blood Services website currently indicates:

Right now there is a special need for ethnic males aged 17 to 35.

This has real consequences. It means that those who need bone marrow transplants are more likely (perhaps much more likely) to find matching donors if they are in a "preferred" ethnic group. Canadian Blood Services can chastise members of minority groups for not participating in the OneMatch program, but I suspect that its image problem contributes to the lack of "ethnic" donors.

If Canadian Blood Services's first image problem is that donors have towards the organization, the second is the image problem Canadian Blood Services has towards potential groups of donors. As its decisions over vCJD deferrals in Question 8 illustrate, Canadian Blood Services is trying to balance several competing objectives:

For whatever reason, Canadian Blood Services has catered to certain demographics and not to others. It has decided that it is worth putting a lot of energy into getting the vCJD deferrals right, so that as many donors of European descent can give blood while keeping vCJD out. It appears to have decided that such effort is not warranted for other groups: in particular donors from Africa. There are many healthy potential donors from Africa who have good blood to give, but the screening questionnaire has not put effort into distinguishing African donors (or their sex partners) who should be allowed to give blood from those who shouldn't.

The Chagas questions are affected by this calculation as well. Canadian Blood Services has decided that it is not worth screening every unit of blood for Chagas' disease, so it uses specific questions to select the (potentially large) group of donors to which it will apply the screening test. If Canadian Blood Services decided it was worth their money to screen every unit of blood for Chagas' disease, then Question 14 could be modified and potentially become a lot less unfriendly. But Canadian Blood Services has decided that it is worth saving money and losing this potential donor pool.

Let me be clear: I do not think that Canadian Blood Services is an explicitly racist organization. But I do think they may have perceptions of what they think of as "worthy" donor demographics and what are not, and as Canada's population changes these perceptions will get them into more and more trouble.

So What?

In the conclusion of my talk, I asserted that blood donor screening was necessary, that I would continue to give blood as long as I was eligible, and that I hoped the audience (and by extension, you) would give blood as long as you were eligible. These assertions have some implications which I think are worth exploring.

Firstly, I strongly believe that blood donor screening is necessary. AIDS, vCJD and Chagas' disease are all serious, and they should not be in the blood supply. I believe that some screening is necessary. But there are options that are less heavy-handed and potentially more effective than the one used by Canadian Blood Services. The Australian Red Cross provides one approach that I like. They have a neat interactive map that shows geographic deferrals for countries all over the world. Like Canadian Blood Services, they screen for HIV. In fact, they defer potential donors from more African countries than Question 31 does -- but they do so on the basis of high rates of HIV infection (not HIV-1 Group O infection), and they do not implement lifetime deferrals but instead deferrals of 12 months, which is the same as most other HIV-related deferrals on the Canadian Blood Services questionnaire. They also screen for HIV from other countries where HIV is prevalent, such as Haiti.

As far as I can tell, Australia does screen for Chagas' disease (and only allows certain blood components to be donated), but does not appear to screen out children or grandchildren of those from Latin America.

I do not claim that Canadian Blood Services should adopt the Australian approach wholeheartedly -- it has disadvantages, such as potentially making the screening questionnaire very long. But it does demonstrate that other approaches are possible that might be fairer and lead to fewer image problems for the organization.

By stating that I intend to give blood as long as I am eligible (which may not be a lot longer -- in addition to being involuntarily celibate, I have a family history of diabetes) and hoping you would too, I was hinting that I was not advocating a boycott of Canadian Blood Services. I am somewhat torn about this. An effective boycott would probably get some of these questions changed quickly. We can see the importance Canadian Blood Services places on retaining its existing donor base from the agonizing it went through over the vCJD deferrals. On the other hand, people need blood transfusions, and holding those people hostage to a boycott (or even a threat of a boycott) does not feel right. So although I intend to continue donating blood, I am not sure this is the most effective course of action.

Finally, I stated my hopes that Canadian Blood Services recognise that they have image problems, and that they would be willing to do something about them. I do not know that I believe either of these hopes will be realized. Nonetheless, I sincerely believe that Question 31 is broken and should be fixed: the HIV-1 Group O deferral should be replaced with geographic deferrals for HIV overall, and the deferrals should be reduced to 12 months (or maybe 3 years, as with malaria deferrals) and not lifetime deferrals.

The mother and grandmother provisions in Question 14 should be re-examined and changed if necessary. Canadian Blood Services should consider the cost of screening every unit of blood for Chagas' disease (individually or in pools) and decide whether they really are comfortable having this question in the high-risk section. If so, then Question 11e should migrate to the high-risk section as well.

Canadian Blood Services (and Health Canada) should re-examine their risk window for Western Europe, and see whether it should be brought in line with the risk windows for the UK, France, and Saudi Arabia.

Maybe most importantly, Canadian Blood Services should recognise that there are real perception problems created by their questionnaire, and that their excuses about not discriminating on ethnicity do not seem plausible to anybody who looks at the screening questionnaire. If they want to recruit more "ethnic" donors (for blood donation or bone marrow transplants) then they should recognise how their screening procedures affect that recruitment.

After the talk, I wished everybody a "Happy Blood Donor Week". Apparently, June 10-16 2013 was National Blood Donor Week, and Ignite Waterloo 12 happened to fall during that week. Such timing was unintentional on my part; sometimes, serendipity happens.