On Tuesday I attended an enormously interesting and stimulating conference on The Commercialisation of Life put on by Progress Educational Trust.
The day was divided into two with the morning focus being on genes and genomes and the afternoon concentrating on the baby business. Although much of the first sessions tested my intellectual capacity and knowledge framework I actually found the morning speakers more valuable and stimulating than those in the afternoon. Perversely, however, for the purposes of this blog (and from keeping it from running into thousands of words) I am going to highlight two of the afternoon speakers because what they had to say is directly relevant for people making decisions about having fertility treatment now. The topic for both speakers was the hype around unproven technologies and the huge sums that people desperately wanting a child feel they have to part with in order to ‘give themselves the best chance’.
John Parsons introduced himself as an ‘unreconstructed socialist’ for whom money in medicine inevitably equals the potential for corruption, but it is only since he has retired as the Director of the Assisted Conception Unit at Kings College Hospital that he has felt able to speak out. He started by saying that the fertility ‘industry’ had a poor reputation and was often regarded as simply a money making machine rather than an area of medicine that required particular compassion for patients from practitioners. In the days before IVF, he recalled, patients had to slot into the treatment categories that were available and if they didn’t fit then there was nothing further to be done. These days IVF is seen as the miracle cure for infertility and patients are reluctant to accept that it often doesn’t work and that they have to reconcile themselves to that situation. Whilst recognising that fertility doctors are often resistant to change (sometimes continuing to use techniques that have long been proven unsuccessful) many of those in the private sector have given in to patient demand and market forces and are offering technologies as ‘add-ons’ – supposedly to improve chances of a live birth – that are completely unproven according to the authoritative Cochrane review index http://www.cochrane.org/cochrane-reviews Included in this list are assisted hatching, PGS, DNA fragmentation index, IMSI, time lapse embryo scanning, immune therapies and oral anti-oxident therapy. Parsons concluded by saying that that market forces push practitioners into the use of treatments and techniques under the guise of compassion for patients but in reality they are offering more hype than hope. He stopped short of saying that taking money for these therapies was immoral but the implication remained in the air.
Yacoub Khalaf, Medical Director of the Assisted Conception Unit at Guys Hospital enthusiastically took up the baton from John Parsons. He gave a coruscating presentation about the need for fairness in funding for fertility treatment and the questionable marketing techniques used to sell fertility treatments and other therapies sold as giving women the very best chance of conceiving, when there is no such evidence to support these claims. He was clear that the NHS is not free from guilt in these areas, with little clarity about how much IVF should be costing and with some CCGs willing to pay twice as much as others. In response to a question about how clinics resist offering unproven therapies that are in demand by patients who may go elsewhere if they find they are not available, Khalaf was adamant…practitioners must hold their ground and explain to patients why the particular therapy is not offered and why they do not think it is valuable. If the relationship with the patient is good then she is likely to stay and trust will be maintained. He noted that changing the culture always takes time but is likely to be worthwhile. Single embryo transfer (SET) was used as an example. Not that many years ago SET would have been an aberration. Patients were demanding two, three and four embryo being transferred at a time and practitioners were finding it hard to resist. The backing of the HFEA for SET and the campaign that followed is now proving hugely successful following initial resistance by both doctors and patients. Peter Thompson, Chief Executive of the HFEA thought that the Authority could speak a little louder about unproven therapies. We won’t let him forget that.
There were many memorable moments at this conference but I will not forget the gauntlet thrown down by these two men to an industry that makes so much money out of so much misery. There may be no right to have a child but there should be a right to have properly funded access to appropriate and effective treatments for infertility.