Regulators have an obligation to assist this endeavour and not obstruct its path making this objective unattainable so that affluent couples seek advice overseas whereas those less well off are prevented from seeking treatment, or just give up from frustration because of no donors. Sadly, reproductive medicine is one of the few specialities of medicine in which practitioners are repeatedly prevented from doing their best because of inappropriate regulations which do not take adequate account of biological variance, or patients' views.
My immediate reaction to the unbelievable media hype surrounding Dr Rashbrook's pregnancy, conceived after repeated IVF donor treatment, was to consider why was there such an outcry concerning someone just two years older than the famed Liz Buttle, especially knowing that donor births could occur at any age? However, on reflection, I am pleased this event focused public attention on the inequities of fertility treatment for those requiring donor gametes. This should not just only be the prerogative of the Department of Health, and HFEA, since service provision under their direction has become tragically much worse.
An added irony from the public's perspective is a lack of knowledge that some fertility units still perform little, if any, donation, preferring to commercially perform simpler IVF on favourable women. This is only shown up by analysis of HFEA published data.
So think back and reflect how this sorry state has come to pass. In 1985 we started egg donation and established a pregnancy in 1986 with a 46 year old giving birth to twins. The use of LHRH analogues simplified the coordination and management and hence its rapid uptake (1). Its early performance was not free of media mania when we used known donors (2); a scheme allowed in exceptional circumstances by the former Voluntary Licensing Authority, but its performance was criticised in the media by colleagues (3).
The increasing usage of egg donation brought forth an early dilemma, i.e. a shortage of donors, as we were all recruiting from the same pool, hence delays with recipients waiting, waiting, waiting - even those prepared to pay for treatment.
Part of the reason stemmed from the puny £15 allowable payment and the need to have reconcilable expenses with the HFEA putting this accountancy exercise on the shoulders of individual units, initially at a time when they had no precise idea as to what expenses were allowable. We know this to be the case because we went to the HFEA to verify what would be authentic.
Shortage of donors is not a new phenomenon but has become progressively worse such that a national crisis is now upon us and why has it become so? In 1995 I suggested an 'all-inclusive' allowance to incentivise donors at an HFEA sponsored meeting out of which all expenses must come so there is no onus on centres to have to undertake reconciliation exercises (4). It allowed for pure altruism for those not wanting to claim anything, and sensible recompense for inconvenience and discomfort. Limiting donation to 2-3 times a year was made to counter any argument of tissue trading. This request was dismissed then, and again more recently, and a golden opportunity to turn the tide lost. Instead allowable expenses have now been capped.
What happened instead was that other practitioners dreamt up egg sharing asking infertile women, compromised by their lack of finance to obtain private treatment, to personally yield half of their precious eggs in a reversed Robin Hood fashion, to help those more wealthy. The HFEA were initially hesitant about this ethically questionable practice but succumbed. The HFEA allow egg sharing which provides £2-3,000 financial benefit to an infertile egg sharer yet baulk at an 'all-inclusive' allowance for donors which would dramatically increase recruitment. Egg sharing has become the favoured method of recruiting donors even though data shows what one would expect - a lower success rate when donating a second time around (5). Think again why conceptually we are asking the infertile to be donors to the infertile especially now it is known that 50 per cent of embryos from donors under the age of 30 are chromosomally abnormal. We are independently aware that some young women making multiple embryos actually have low reproductive potential, inevitably and surprisingly, making them poor donors. Why aren't regulators promoting incentives to make more fertile donors who have had children come forward?
What else has gone wrong? Well, there is the CMV discordance issue between donors and recipients yet the fertility community is still waiting to hear from the HFEA, more than two years later than promised, whether they are going to amend their recommendation especially as it is known that the CMV virus does not get into eggs and sperm but only into accessory fluids. This inappropriate stipulation has prevented innumerable potential donations, both anonymous and known, even between sisters. They insist on CMV concordance when the biological risk is negligible, and yet they allow IVF and ICSI on HIV (human immunodeficiency virus) positive individuals. So much for humanitarian logic.
Finally, there is the loss of anonymity 'killer blow'. The Government made it clear that it didn't want to introduce a legal statute which would limit a clinical service when extending the period of the consultation process and then did that very thing. The Department of Health received only seven replies from egg donors out of 237 responses to its consultation document concerning 'providing information about sperm, egg and embryo donors' - and only 18 from recipients of donor eggs. Melanie Johnson MP (6) later reported receiving responses from approximately 100 egg donors but no mention was made of recipients' views. Why was this so? In our own survey concerning the loss of anonymity, and the effect of this issue on whether anonymous donors and recipients would have gone through treatment when they did, 36 per cent of 165 donors and 53 per cent of 142 recipients stated that they would not have proceeded if this had been an issue at the time (7).
Our egg donor numbers for recipients of all ages has reduced from 120 five years ago to 25 last year reflecting the disastrous consequences of not listening sympathetically to the right audience. It was recently reported that 'dozens of women over 50 were having children' (8) and the total number delivering in the UK may be on the increase from overseas treatment. However our data indicates a drop from 16 live births from egg donation in 2002 to four in 2004 confirming the reduction in our UK donors. The passing of the Loss of Anonymity legal statute was in reality a political paper exercise which is bound to fail those children born overseas since they will not have any reason to question their parentage, so how critical was this statute in the first place?
And what of the consequences of women seeking treatment overseas? Increased tourism in Cyprus, Romania, Spain, Ukraine and USA benefits these countries, and some who can afford treatment. With it there is a media bonanza when notorious gynaecologists bathing in reflected limelight promote its performance without making any reference to the increased risks especially those related to donated eggs (9), age, and embryo transfer number.
And what of the outcome? Happiness for some, and disappointment or tragedy for others especially from premature delivery following unregulated multiple multi-embryo transfer. However HFEA officials will not succeed in scaring off women from seeking overseas treatment by implying this represents 'a profoundly exploitative and unethical trade' (10) when some provide an excellent service which should be available here. They could have prevented the problem occurring in the first place.Perhaps we should be grateful to Dr Rashbrook to whom we wish good fortune and a happy life with her child. It is only by its publicity that one national newspaper (11) is calling for positive initiatives to recruit more donors. So thank you Dr Rashbrook on behalf of the infertile for provoking this epistle.