The real cost of infertility?

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.