Last week the Daily Mail published an undercover investigation into certain aspects of IVF practice in the UK (reported elsewhere in BioNews this week). Whilst this has highlighted some issues, unfortunately the meaning of published statistics has been misinterpreted and certain aspects of the investigation have been given far more weight than is just. Rather than serving the public good, this has the potential to leave vulnerable patients scared and confused.
The IVF sector is the mostly highly regulated of all areas of medicine in the UK, nonetheless there may well be pockets of bad practice and clearly there is room for improvement in some areas. This is the case in any branch of medicine and the fertility sector is certainly no worse than any other. Information provided to patients must enable them to discern for themselves whether an individual clinic is offering appropriate advice and treatment. My concern is that this report muddies the waters, making it difficult for patients to make an informed choice about their care.
The fertility sector has a higher proportion of private practice because of a lack of NHS funding and the associated postcode lottery. I have been campaigning hard for this to change and, on behalf of the British Fertility Society (BFS), Fertility Network UK and Fertility Fairness am chairing the IVF Pricing Committee for NHS England. The lack of NHS funding has created a unique scenario where all treatments must be itemised and charged for (either to CCGs when there is NHS funding or directly to patients when there is not).
So we are dealing with the symptoms of a much more serious problem, namely that the majority of patients dealing with infertility are unable to access sufficient NHS funded treatments to become pregnant.
The Daily Mail highlighted a few areas where they perceived concern. One of these is egg sharing, whereby women donate some of their eggs during the course of their own IVF treatment cycle in order to be able to help fund that treatment. Donating or sharing eggs for IVF is a completely legitimate practice, and was already happening in the late 1990s. In other countries both egg and sperm donors would be paid for their donation, but here it was decided that it was wrong to incentivise in that way and risk exploiting people who are in poverty. We are only allowed to compensate patients for reasonable expenses, and couples must be very clear about the issues surrounding such treatment.
Egg sharing has been shown to work well for the vast majority of patients and is, of course, dependent upon very careful and thorough counselling about the implications. The Daily Mail’s investigation has, however, highlighted some questionable practices that may have affected some patients who participated in egg sharing in return for free or discounted treatment. The UK regulator, the Human Fertilisation and Embryology Authority (HFEA) , is rightly taking this seriously. But this, from my viewpoint in active clinical practice, and contrary to the highly critical view expressed by Professor Winston, is not something that is universal in the field.
All couples facing infertility deal with ethical and emotionally challenging decisions around their course of action and their genetic association with their children: anything from adoption to egg-sharing, sperm donation or mitochondrial donation requires complex moral and ethical considerations. There is a myriad of underlying causes including lack of fertility education in schools, lack of NHS funding for IVF that create a financial incentive for patients who struggle to pay for IVF privately and lack of appropriate healthcare advice during reproductive years as to lifestyle factors that can affect gamete quality and fertility.
A further investigation into reporting of ovarian hyperstimulation syndrome (OHSS) is somewhat misleading. I do not believe there is a major problem with clinics under-reporting serious cases of OHSS. The numbers reported by NHS hospitals include admissions to hospital after egg collection, the majority of which are for relatively mild symptoms that settle down on their own within a few days – these are very different from full-blown OHSS, which can indeed be very serious. My organisation, the British Fertility Society (BFS), along with the Royal College of Obstetricians and Gynaecologists (RCOG), have taken the lead in developing guidelines on how to prevent and treat OHSS. These guidelines are widely followed across the world.
We at the BFS accept absolutely that there are areas of poor practice in the fertility sector. We do not seek to dismiss valid concerns; exploitation or endangerment of patients is totally unacceptable. We trust that the HFEA will deal with any cases it uncovers and we will encourage our professional community to cooperate in the investigations. Meanwhile, we will continue to argue in support of NHS funding for fertility treatment, the lack of which we believe remains a factor driving potentially contentious practice.
The BFS has written numerous Policy & Practice Papers and guidelines to better inform the profession, alongside our training courses, study weeks and academic symposia. These are attended by those of us in active practice who seek to update our knowledge and ensure that we are providing evidence-based treatments. We are disappointed with the criticism levied at us by Professor Winston in his Daily Mail opinion piece on the investigation – we are a professional body that he himself once chaired. Given this, we would like to send an open invitation to Professor Winston to attend our meetings and hear the latest data and innovations.
The UK leads the way with innovation in IVF and other infertility treatments and the BFS works with our community to share good practice. We also work with the regulators and policy makers to ensure that ethically challenging issues are embraced with tight but permissive regulation. In theory, the UK is one of the best places in the world – scientifically and medically – to be a person dealing with infertility, but without NHS funding for treatment this point is moot.
National Institute for Health and Care Excellence (NICE) recommends that the NHS offers three full cycles of IVF treatment. But the most recent statistics from Fertility Fairness showed that only 16 percent of CCGs were providing three cycles, with 60 percent offering only one, and 22 percent offering two. It’s true that we are experiencing a period of austerity politics and that we have an ageing population, both of which are challenging our NHS. There are also social factors – particularly the increase in numbers of people delaying parenthood until later in life – that are compounding these issues. But it doesn’t have to be this way.
Not treating infertility properly can actually cost the NHS a lot of money: infertility is the second most common reason that a woman visits her GP (the first being pregnancy), and people who are dealing with infertility commonly suffer stress, anxiety, and depression, which can cause lifelong health issues that require treatment. Yet there appears to be some short-sightedness on the part of decision makers in some CCGs - it really isn’t as simple as dividing up the pot of money within the CCG, as there is a net cost of not treating infertility. This cost could be saved if the NICE guidelines were followed.