The fourth and final session of the Progress Educational Trust's (PET) annual conference was a single speaker session: Professor Lord Robert Winston, who was introduced and chaired by Jeremy Laurance.
Lord Winston, of course, has never been one to shy away from controversial topics, or to say what he really thinks. His talk's title, 'The Real Cost of Infertility', promised much, perhaps leading us from the hype and hope of the baby business discussed earlier on to look at infertility's true costs - to society, to families, to women...
Lord Winston started by thanking PET and noting how instrumental the organisation was in the early days of IVF regulation, against a great deal of parliamentary and other opposition. PET, he said, had since then been 'very important in creating sensible dialogue' and had helped to shape good legislation in this country and the establishment of the Human Fertilisation and Embryology Authority (HFEA), which - at the time - he had thought to be a great idea.
Now, though, he has doubts. The Authority has 'many things it can't do but also many things it should do but won't'. Criticism of the HFEA is really nothing new from Lord Winston, of course.
He went on to talk about the infertility experience - how it affects individuals and couples, not only medically and physically, but emotionally and in terms of relationships. Infertility, he said, is misunderstood by the health service - it is seen as a disease that needs treatment.
Doctors in other specialties view the infertility procedure as weird - no-one reaches straight for coronary surgery when there's a pain in the chest, he said, as that can be caused by many things. However, when someone can't have children, the treatment sine qua non is IVF.
Most of the time, he says, there is no serious attempt to make a clear diagnosis of the problem - and this can leave patients 'empty-handed', both in terms of their finances and their chance of having a child. In what he called a 'chronic problem', one of the worst aspects of the health service, which he views as 'incredibly badly run, for a long time' is the 'maternity market'.
Continuing down the money path, he described the 'avarice' of fertility professionals, echoing some of the sentiments of Professor John Parsons in an earlier session (see BioNews 785). 'While we look and shed crocodile tears about infertile patients', vested interests get in the way. He had 'lost count' of the times he had seen women treated with IVF, later to be found to have a malformed uterus or some other condition, and gets many letters from patients bemoaning costs.
This can't be right, he said – the National Institute for Health and Care Excellence (NICE) guidelines, in two successive iterations, have been inadequate: they address treatment, but not diagnosis. The cost of IVF varies massively trust by trust across the UK – and most trusts charge above cost, as they are profit-driven.
He estimated that in a large, properly-run IVF centre, excluding initial start-up costs, IVF cycles could be provided for less than £1,000: 'IVF should not cost the kind of money that is currently being spent'. Where are the regulators in all this, he asked? Why can't they make recommendations about 'proper costings'?
Perhaps this is what he had in mind when he said the HFEA had things it should do but won't, as he also went on to illustrate how in his view the HFEA does badly at policing unproven treatments, such as immune treatments, preimplantation genetic screening and others. Clinics can offer these but patients should not, according to Winston, have to pay for experimental or exploratory treatments.
Describing all this as a 'bleak picture of poor diagnosis, misdiagnosis and selling of uncharted treatment', as chair, Laurance allowed himself the first question, and asked whether the problem was confined to IVF or extended to private medicine more generally.
Somewhat bizarrely, despite the bluster and rhetoric that came before, Lord Winston said that the problem was by no means universal and that many clinics offer 'perfectly legitimate private practice'. He did then qualify this by saying that, as we see more privatised medicine, the situation will worsen.
But if he was only singling out a few clinics that he thinks the HFEA should do something about, then perhaps this is how he should have framed it - he might then have had more of us with him. As he admitted in response to a later question, clinics he has worked in have also taken private patients as well as NHS patients but 'doing both doesn't make bad doctors or a bad clinic, but it does create a paradox'.
A patient in the audience asked who should regulate, if not the HFEA? Who else should help patients get information about clinics and treatments? Lord Winston continued his attack - the information supplied by the HFEA, he said, is 'quite inadequate', citing the fact that the HFEA agrees that the most serious risk of IVF is twin pregnancy. 'It's a lie', he stated - 'the most serious risk is not getting pregnant at all'. The HFEA had conflicts of interest, he added - being both a regulator of services and an inspector with statutory powers isn't right.
He was then asked a question about clinics in the UK who have partnerships with clinics overseas. Lord Winston said it was 'ironic' that patients can be recommended a clinic overseas and come back with three embryos transferred - 'it can't be regulated', he said, and neither can other treatments which patients go overseas to get because they are not legal here.
He mentioned the Fertility Show, held in November in London, where stands advertised things such as sex selection, not available here. He also pointed out that overseas clinics can advertise on the London Underground things that if they were UK practitioners would be illegal and have them struck off the medical register. These 'loopholes' are dangerous, he said, adding: 'I can't believe the HFEA doesn't notice this - it's on the Central Line!'
HFEA chief executive, Peter Thompson, was in the audience, and had spoken in the previous session about what the HFEA can do about the cost of IVF. I don't know whether Lord Winston was there for that. If he had been he might have heard about the HFEA seeking to provide more (and better) information to help manage patient expectations; becoming 'a little louder; a little clearer' in what it says about uncharted and unproven treatments; and providing transparent information about expected costs to patients.
It seems that after all, they were singing from the same hymn sheet, just in different choirs. Though Lord Winston came into the audience during the questions in an almost daytime TV talk show host manner, he dismissed many points and questions raised as irrelevant, and he didn't seem to see the mutuality of concerns.
Overall, in what Jeremy Laurance called a 'coruscating tour d'horizon', what Lord Winston seemed to tell us is that IVF is expensive (and the cost varies depending on where you are treated), clinics are out to make profits and, to this end, treatments are imposed on many patients before proper diagnoses are carried out, or patients seek treatments overseas which are unavailable, hard to access or illegal in the UK. All of which ought to be sorted out, but isn't, by the HFEA. The HFEA may be taking some steps towards improving things - and managing what patients expect seems like a good a place as any to start, especially with the NHS in perpetual turmoil.
It would be great to see equal provision of infertility diagnostics and treatment services - including the NICE Guidelines-suggested three full cycles of IVF - across the country. But I don't think that's the HFEA's job (though it might be able to help). Lord Winston is the man with a voice in Parliament. Perhaps, instead of lambasting the HFEA outside of Parliament, he should engage its (and other's) help to campaign in Parliament for better NHS provision of fertility services across the UK.
The Progress Educational Trust (PET) is grateful to the conference's sponsors - Merck Serono, the Anne McLaren Memorial Trust Fund, the Edwards and Steptoe Research Trust Fund, Ferring Pharmaceuticals, the London Women's Clinic and the Medical Research Council.
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