As we have reached a “natural break” in this campaign, our former chair, Tony Simpson, has provided this detailed account of the campaign so far:
BLOOD DONATION CAMPAIGN
In New Zealand, as in many (though not all) western countries, there is a blanket ban on men who have sex with men (MSM) donating blood. This dates back to the 1980s, when AIDS appeared on the scene, and was initially seen as the only way to safeguard the blood supplies. As science progressed, and blood tests became more and more accurate, this position was softened somewhat, from a lifetime ban to the current ban of one year only. However, it is still a blanket ban, based on group rather than individual risk assessment.
RW has campaigned now for several years to move towards individual risk assessment, arguing that the current policy discriminates on the grounds of sexual orientation. We first got involved when the NZ Blood Service asked for comments on the proposed reduction of the ban from 10 years to 5. At that time, one member volunteered himself as an individual case which could then go before the Human Rights Commission. This process was begun at the time, but not taken further. At the time we met with much support within our communities for our stand, but also some opposition from those who wished to support the status quo.
Last year, we again responded to consultation to reduce the exclusion period from 5 years to one year. We were the only group in Wellington to meet with the advisory committee, whose arguments we found increasingly unconvincing. Developments in other countries, including strong support for our position from politicians and groups such as the American Medical Association, have meant that we have met with little opposition within our communities. But there is little other organised support here (though we know of many aggrieved individuals) for our continuing campaign, despite what we see as the increasing weakness of the official line. There is also no political support, unlike in the UK. We are therefore considering new options as to how to take this campaign forward in the future such as contacting NZAF and Body Positive to test their current positions, continuing with our complaint to the Human Rights Commission and contacting PhD students and practitioners/researchers who have an interest in looking at the scientific implications of our proposals.
Now that we have reached a plateau in respect of this campaign it might be helpful for members to put it in some sort of context so that those who have come to it only lately are fully aware of its origins and the manner in which we have dealt with it.
Some six years ago we began to receive approaches from some of our members who had discovered in the context of attempting to give blood for transfusion purposes that they were barred from doing so because they had had sex with another man (MSM) within the last ten years. What struck most of our informants most forcefully was that in contrast, this ban only applied to women who had had sex with men who have sex with other men for one year, which appeared inconsistent and absurd. On the basis of this and further research it was clear that these criteria reflected an earlier era in which there were no fully reliable tests available for the presence of HIV AIDS. This is, of course, no longer the case. Current testing methods for HIV AIDS are some of the most reliable known to medical science.
In the course of the research we became aware that this was an international problem, that the rules applied differed widely from jurisdiction to jurisdiction, and that in Australia in particular (where the prohibition is one year) this was being challenged.
It should be also explained that in New Zealand, unlike most other jurisdictions, the collection of blood for transfusion purposes is in the hands of a public health body, the New Zealand Blood Service, overseen by a monitoring body Medsafe which monitors all therapeutic services and procedures of this sort. In many other countries the function is either performed by NGOs such as the Red Cross (as in Australia), or is entirely in the hands of private commercial ventures (as in the United States) although this is also usually under the oversight of government monitoring bodies.
One of the results of this is that giving blood is regarded in this country as a citizen duty and it is not unusual for the mobile collection unit to visit workplaces to collect blood at the invitation of the management or union representatives.This can lead to considerable pressure and embarrassment for those who are not ‘out’ in their workplace when they are called on to explain why they are unwilling to give blood.
Our first line of approach was to the Blood Service. It should be noted in that context that the Service has taken our concerns seriously from the outset and has listened to what we have to say and responded at a professional level. Their position is and remains that if there is appropriate scientific peer reviewed evidence which justifies a change to a more liberal regime then this will be taken into account and any changes it underwrites will be made to current criteria.
It emerged in that context that they had had in mind for some time an independent review. This was subsequently conducted under the auspices of Otago University and as a result some changes were made about two years ago to the then criteria. In essence these reduced the buffer period to five years for men who have sex with men (which in practical terms makes little or no material difference), and defined sexual activity in this context as anal or oral sex with or without a condom (which does make a difference). We still consider that these criteria are too stringent.
We therefore lodged a formal application with the Human Rights Commission (HRC) claiming that this was a breach of the legislation because our members were being unnecessarily stigmatised by the current criteria. This was done on the basis of a specific case created for the purpose i.e. a member of our Board volunteered to offer blood to the Blood Service and when his offer was declined this became the peg for our formal lodgement of claim with the HRC.
As this matter progressed we also became aware that there was some opposition to our initiative within the gay community itself. Some of the issues this entailed were canvassed at a forum organised in late 2009 under the auspices of the Wellington group of the NZ AIDS Foundation. This forum made it clear that there was a certain amount of misunderstanding about the nature of our position so we need to clarify those matters once again.
Firstly, we have throughout firmly and clearly reiterated our basic position which is that the safety of the blood supply, insofar as that can be guaranteed, has to be the paramount consideration in everyone’s perception of the issues involved.
The second point to be made is that all parties to the issues raised by the current blood donation criteria must ultimately rely on scientific research conducted in terms of the usual international protocols for such research including that it is peer reviewed and published in acceptable forums. We need to make this point because similarly in some quarters our position on this has been misrepresented as anti science, which is most certainly not the case. The science based material available is all anyone has to go on. It is our case that that evidence has been misread or misunderstood
Thirdly we do not hold the view that either the current criteria or the review which led to their adoption are ‘homophobic’. This expression does not appear in the legislation under which we have pursued the issues involved and the use of such language is unhelpful in that it serves only to obscure what those issues are. We certainly do not ‘ignore gay and bi-sexual men’s HIV prevention needs’ as has been suggested in some quarters, nor do we claim that there is a ‘right to donate’ which there clearly is not.
Finally some of those who oppose change to the criteria in New Zealand have made some play with the suggestion that this is not a matter to do with sexual orientation but with sexual behaviour. We are sure that there is an interesting debate to be had over the relationship between identity, behaviour and orientation although it is unlikely that the questions it raises can be resolved now or ever. We need to be clear that however interesting it may be the relationship between those things is irrelevant to our claims to the HRC. The question under the Human Rights Act is whether or not discrimination on the grounds of sexual behaviour/ orientation is over-ridden by considerations of, in this case the needs of the protection of public health, and more particularly whether those criteria currently in place for accepting or not accepting blood from men who have sex with men can be modified without increasing any risk to the public health while at the same time minimising any stigma associated with the application of the criteria.
It is also apposite to be aware that there has been a test case in Tasmania (which did not in the event lead to the reduction of the buffer period). Ironically, these who opposed any change in that context (largely the Australian Red Cross) justified the one year prohibition by the use of the same arguments and largely the same scientific data as some of those who justify no change here from ten and then five years. But notwithstanding that the Tasmanian case did not succeed, although it clarified many of the issues involved, some of the evidence presented, particularly that by Dr Scott Halpern who is an associate professor of Epidemiology in the University of Pennsylvania Department of Medicine with specific doctoral qualifications in epidemiology and a qualified medical practitioner with further qualifications in bioethics, psychology and economics, appears to sustain our own case.
Firstly he comments on the existing policies and how they came to be. He remarks (transcript of evidence p13): “There’s nothing particularly privileged about the status quo that gives it acceptance in the face of no data. So the burden of proof to change a policy need not be any stronger than the burden of proof to maintain a policy, and in cases where a particular group is being infringed upon in terms of the opportunities available to them, one could credibly argue that the burden of proof to change the current policy is actually substantially lower.”
The point he makes concerning thresholds is a controversial one but it should be noted that the Blood Service Review itself accepted this point and made changes which narrowed the excluded group concerned. What it did not do was address the question of the widely differing time spans in criteria as between regimes, ranging from an absolute lifetime prohibition to no imposition of a time criterion at all in some jurisdictions which rely on interviews and testing. In Tasmania the default criterion was, we emphasise, one year. We do not see how both the New Zealand and Tasmanian authorities can be right. This suggests that what is determining the criteria is as much a matter of history and culture in interpreting the meaning of the accepted science that everyone is relying on as much as in the science itself.
It is important to remind ourselves that science is not just a technique but a culture and this culture resides within the context of a broader society. Like any other culture science has signifiers, hierarchies and powers, and medical science in particular is notorious for its inherent conservatism (because of the need for caution in accepting new therapies or practises in particular), and the role it plays in the political structures of the broader community. This effect is magnified by the uncertainties inherent in statistical projection and probability in the specific science dealing with HIV/AIDS ( for the political context of statistical projection and measurement see Alain Desrosieres La politique des grands nombres: Histoire de la raison statistique Paris 1993 – there is an English translation 1998 by Camille Naish published by the Harvard University Press).
The other important point that Dr Halpern makes in evidence concerns the relationship between the incidence of HIV/AIDS in a particular population and the risk this poses to the blood supply. It was put to him that given the incidence of the syndrome in the MSM population in Australia and the basis this provided for transmission (very similar to that in New Zealand) the risk was far too high to allow that population to donate blood. Dr Halpern responded to the effect that although there might be a connection between those two statements it was neither direct nor simple. His precise words were that evidence of the source of newly acquired infections “is not nearly adequate evidence to speak to the question of the relative risk of transmission among MSM versus another risk group. That is a fundamentally different question that requires a grasp of the entire population at risk. That’s a basic epidemiologic principle.” (p20 of the transcript).
His evidence goes on to point out that epidemiologists deal in relative risk. “It is absolutely true,” he says, “that the relative risk of transmitting HIV is higher among MSM and among many other risk groups, although I would not say all. That is not a particularly relevant consideration however when it comes to policy. Policy makers must be concerned with what epidemiologists call the attributable risk. The attributable risk in this case if we were to make a policy change is nowhere near 80 per cent. It’s in fact substantially lower than 1 per cent. So if your rate right now is close to zero and you suddenly allowed all the highest risk donors to donate blood your risk would still be approximately zero.” It needs to be recalled in that context that Dr Halpern is here speaking of Tasmania where the deferral period is one year.
There are some figures cited in the Tasmanian evidence for South Africa from the American Centres for Disease Control where the deferral period is six months for MSM for oral or anal sex with or without a condom. When blood from both homosexual and heterosexual donors is screened in South Africa using antibody screening it identifies 2.6 cases per hundred thousand, and one per hundred thousand with NAT testing. This is an extraordinarily rare incidence. In the United States for instance ‘rare’ is defined by the National Institutes of Health as one case in five thousand. It is in fact a risk much less likely, Dr Halpern remarks, than getting struck by lightning. The 2007 Review Committee itself comments on the fact that no RNA positive antibodies have been detected since nucleic acid testing was introduced in this country in 2000.
We suggest that the conclusions reached by the Review Committee and other opponents of change in the current criteria are based partly on a conflation of incidence in the MSM population and the degree of assessable projectable risk that this represents, and partly on considerations which are not scientific but cultural and political when our position is that we should be relying wholly on the science.
The case we presented to the Human Rights Commission went to mediation in early 2010 and was inconclusive. This was not because our case lacked merit. In fact we have been subsequently congratulated by the Blood Service for the rational and responsible approach we have taken throughout. The problem is that given the lack of conclusive research evidence both in New Zealand and internationally which might justify further liberalisation the Blood Service is not prepared to change its current stance. The only course open to us would be to challenge that before the Human Rights Review Tribunal, and we assess that they would take the same view as the Blood Service. We would thus be entering into a process which would involve some expense to our membership – we would probably have to brief legal counsel – when we would be unlikely to obtain the result we want.
On a more positive note there are indications that further current research, particularly in the United Kingdom, will produce scientific justification for the liberalisation we are seeking, and the Blood Service is committed to a further review in the next three years. One of the problems is, of course, that there is little incentive on the part of those able to do so to conduct research in this area, although we continue to believe that the Blood Service here is unnecessarily passing up an opportunity to enhance its sources of supply.
We have therefore adjourned our case to the HRC in the meantime pending international developments which we are currently monitoring closely.