Trading in hope
IVF clinics mis-sell motherhood to women like me
Anyone who has been through the desperate and draining process of fertility treatment knows about the extraordinary – and sometimes dangerous – power of hope. So when Sally Cheshire, chairman of the Human Fertilisation and Embryology Authority (HFEA), this week accused IVF clinics of “trading on hope”, it will have chimed with many.
In an interview with The Daily Telegraph, Cheshire said some parts of the sector were exploiting older women with aggressive sales tactics and extortionate prices, while being dishonest about the success rates.
I went through 11 rounds of unsuccessful IVF over a decade, beginning when I was 34 and diagnosed with “unexplained infertility”; we made our last when I was 43. Our long struggle to conceive cost us £70,000 and led to several miscarriages and an ectopic pregnancy that almost took my life. Doctors told us over and over again that if we kept trying, we would eventually succeed.
Though I wouldn’t say I was exploited, my campaigning work in this area leaves me in no doubt that the industry is murky at worst and opaque at best, and needs to get better. This business, which is becoming increasingly commercialised thanks to the decline in provision of IVF on the NHS, is selling one of the most potent dreams of all – a baby – and there are huge gaps in information, which can lead to a risk of unscrupulous practice and devastation for would-be parents.
Recent reports that the average age at which a woman becomes a mother is increasing were met with jubilation in some quarters, and we’re forever
hearing about the “joy” of some celebrity or another as they give birth in their 40s or even 50s. But such stories can be misleading.
A woman’s egg quantity and quality starts to decline rapidly after her mid 30s; the number of women undergoing fertility treatment in their 40s has doubled since 2004. And IVF is not a magic bullet. It’s simply not understood that even in women under 35, two thirds of IVF cycles will fail. After the age of 40 live birth rates drop to less than 10 per cent – a lottery you’re unlikely to win. However, confusion around the odds of IVF working cannot be blamed squarely on the clinics. Many people persuade themselves they will be the lucky ones – partly because they can’t contemplate the abyss.
If you go through multiple cycles of treatment or you’re an older woman prepared to consider donor eggs, then the odds improve – but people are simply not prepared for the physical, emotional or financial toll of all this.
Added to this bewildering dilemma are so-called “add-ons”, which also come into Cheshire’s line of attack. These are medically unproven, often costly, treatments that many patients are sold to help improve their chances of success. They can increase the cost of one round of IVF from £5,000 skywards. On my 11th and final round of treatment, when I was throwing the kitchen sink at it, we shelled out around £15,000 for an “endometrial scratch” – to aid implantation – and to have my husband’s white blood cells injected into my arm to encourage my immune system not to reject our embryo.
I always say that I was complicit in everything I did in my pursuit of motherhood, but was I encouraged by doctors to try things that hadn’t been through controlled trials and might even cause long-term harm? Yes. Did I fully understand what I was doing. Not really. Did these doctors get paid handsomely for it? Absolutely.
I recently participated in a show on BBC Radio 5 Live with a group of women who, between them, had been through over 100 cycles of IVF. The vast majority had paid for “add-ons” – with greater or lesser understanding of the evidence behind them – but only two said they felt they had been mis-sold them. Most simply said they were prepared to try anything.
Joyce Harper, professor of reproductive science at University College London, and the mother of three sons by IVF, helped create the HFEA’S traffic light guidance for add-ons, where red means no evidence; amber means some encouraging early trials; and green means go. None of the treatments currently in use have been given a green light yet.
We must recognise that science must start somewhere, and respect patient choice. But fertility clinics should practise the Hippocratic oath of “do no harm” – physically, emotionally and perhaps even financially – and as a nation it’s vital that we talk about IVF more so people are able to make the most informed decisions about their reproductive lives.