The knots of infertility

This morning, I was invited back on to breakfast television to reprise the argument I made on the programme last year regarding the NICE guidelines which recommended that infertile couples should be given 3 cycles of IVF on the NHS.

Since then it transpires that over three quarters of NHS trusts are disregarding the guidance, leading NICE to issue even stronger advice forcing Clinical Commissioning Groups to implement their IVF guidelines, to end the ‘postcode lottery’ system which produces massive inequality in terms of how qualifying couples are treated.

In this instance inequality is not an inappropriate description of the situation. The NHS should provide an equal standard of care across the country – if it has determined that infertile couples should be afforded 3 cycles of IVF treatment then that should apply to you regardless of whether you live within affluent city suburbs, in a remote part of the country or on a run-down council estate.

If IVF is an accepted medical treatment on a par with chemotherapy for example, then it should not be withheld from anyone because their local health trust has decided that they cannot afford it and their priorities lie elsewhere.

The trouble is, of course, that whilst IVF is a medical treatment, opinion is massively and legitimately divided as to whether or not this ought to be funded by the NHS, given that infertility in and of itself is not a fatal, life-threatening or even life-limiting condition, unless one extends the medical definition of life-limiting to encompass quality of life issues.

That’s not to downplay the devastating effects of infertility which can undoubtedly cause emotional ill-health, but simply to note that an inability to conceive won’t actually kill you neither is there any research to prove that it might shorten your lifespan.

This certainly seems to be the view that various CCGs have taken faced with increasing budget constraints and difficult decisions as to where to channel their funds, and its one with which many of us will have sympathy. If the choice is between paying for drugs to extend the lifespan of a cancer patient, a hip operation or heart bypass for an elderly patient and whether or not to fund a form of therapy which could lead to a couple having a much wanted child, then for most right-thinking people, the choice is clear. Our priority should be with assisting the already-living and vulnerable rather than ignoring them in favour of creating their replacements.

As I pointed out last year, NICE guidelines have a habit of becoming quasi-legislation and thus last week former health secretary Andrew Lansley (responsible for the stealthy and undemocratic liberalisation of abortion law) has said that CCGs have a responsibility to obey NICE rules despite the fact that they are not actual pieces of legislation. Spot the inconsistency. In the eyes of Mr Lansley, NICE comes before the letter and spirit of the law.

So slowly but surely, British law has introduced and supported the notion that a child is something that every single person or couple should have a right to and for which the state  should pay. Consider the language of Sarah Norcross, co-chairman of the National Infertility Awareness Campaign who says “it’s high time that patients were allowed to access the treatment that they were entitled to”.

The ethics of entitlement and so-called equality therefore override any other considerations. If you are entitled to medical treatment on the NHS, then you should be given it regardless of other factors. If not being able to have a child is automatically designated as being a medical issue, because it takes clinical measures to achieve one, then it’s some kind of ‘ist’ or phobic to deny the treatment to someone, taking into account their lifestyle or individual circumstances. The needs of the adult are paramount, the needs of the child secondary – all that’s needed is love and the desire to access costly and gruelling treatment is sufficient evidence of suitability and should overcome all other considerations.

Apologies for beating the same allegedly homphobic drum, but recent HFEA stats show that there was a 36% increase in lesbian couples using IVF between 2010 and 2012. No matter how much sympathy one may or may not have for two women deciding to disregard a child’s right to a father, it’s not bigoted to ask whether or not this is really the sort of thing Bevan had in mind when he put in place the founding principles of the NHS? Should a single man or woman have the same right to access this treatment as married opposite gender couple? If resources are scarce, and IVF is going to be an accepted treatment, is it really so heinous to prioritise the married couple in a stable relationship who have been trying to conceive over a number years and have suffered a number of miscarriages over other scenarios? Or does the defining zeitgeist of equality mean that all situations and circumstances have to be treated equally regardless of merit? To say that one person may be more deserving of another, whether that be in the field of IVF or the even more controversial field of welfare and benefits, is today’s unspeakable heresy. In our relativistic world no one set of circumstances must ever be judged as being better or worse than another.

Another unpalatable fact that no-one seems to want to discuss when discussing the ethics of IVF on the NHS is the ethics of IVF itself. So when I attempted to point out that for every live birth that comes about due to IVF, another 30 embryos are created and that of the 4 million embryos created since 1991, only a tiny proportion have made it through to birth – this point was brushed aside. The discussion has to centre around the ethics of the treatment being made available for free, regardless of whether the treatment is in itself ethical.

I don’t know what is more frustrating, the entitlement culture, the disregard for the welfare of children or the wilful short-sightedness. Any other expensive treatment costing around £3.5K to £5K a time which had a less than 25% chance of success would not see NICE attempting to impose it upon CCGs as a matter of routine, especially when the treatment itself is so physically and emotionally demanding. It would instead be allocated according to individual circumstances.

As I said on the programme, it seems that we’ve got ourselves in something of a pickle with regards to fertility. On the one hand there’s couples crying out for IVF and the opportunity for a biological child of their own, on the other almost 200,000 abortions take place in the UK every year. Added to which abortion rates amongst women in their ‘30s and ‘40s are rising as women believe that they are no longer fertile.

It’s time for some joined-up social policy thinking on this issue. We know that with a little bit of training women can be trained to monitor and track their monthly cycles and pinpoint with a high degree of accuracy the fertile periods every month.

Women are given so many mixed messages and conflicting signals about their own fertility it’s not surprising that so many of us fail to navigate successfully through the reproductive minefield. Instead of teaching young women how to avoid pregnancy and that sex can be devoid of consequences how about teaching girls (and boys for that matter) the specifics of how to track female fertility. Instead of teaching them that fertility is an obstacle which must be suppressed via chemical hormones and abortion a useful and necessary back-up, why not help them to empower themselves in terms of learning the ebbs and flows of their own unique monthly cycle.

Armed with that information, they can then make the decisions which they feel are most appropriate, especially during the window of peak fertility. Tracking monthly cycles has another advantage in that it enables abnormal cycles or potential issues and barriers to conception to be identified and treated.

If the NHS is serious about wanting to tackle infertility, then instead of chucking money at what is a not very effective sticking plaster, a more pragmatic and cost-effective solution is to enable both women and medical practitioners to become specialists in natural female fertility instead of attempting to artificially suppress it until such time as it might be needed and then attempting to employ a costly treatment with a 75% chance of failure.

Even more radical, instead of teaching young girls that pregnancy is to be avoided until an indeterminate date in the distant future, how about education that focuses their minds on real family planning and the pros and cons of early versus late motherhood? How about going a step further and implementing far better childcare and maternity solutions and options for university students. While we’re at it why not chuck in cheap starter homes for young couples and measures to make life more attractive and conducive for young families?

Unfortunately the genie is out of the bottle when it comes to IVF and it would take a heart of stone not to sympathise with women like Jessica Hepburn who was interviewed alongside me earlier. What I wouldn’t do to be able to wave a wand and give her a baby and find a method that was successful, devoid of harmful physical side-effects and didn’t involve the destruction of life. Disagreeing with the use of technology does not extend to blaming or shaming those who want to avail themselves of it.

Heartbreaking, unexplained and untreatable cases of infertility cannot be completely eliminated, but with a bit more joined up thinking, the need for both IVF and at the other end of the spectrum abortion, could be drastically reduced.

Catholics reading this might be aware that today marks the start of a novena to Mary, Undoer of Knots. Dedicating it to couples facing the pain of infertility seems a good place to start.

 

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