Why I’m ashamed of the exploitation in the IVF industry – Daily Mail article 4 May 2017

This week I feel ashamed.  This newspaper has published evidence of widespread bad practice in my own speciality of medicine, infertility treatment.

And I feel angry because the Government’s regulatory body, the Human Fertilisation and Embryology Authority has been inadequate.

It has not prevented the disgraceful exploitation of patients, mostly women.

I am also depressed because, 27 years ago, we doctors promised Parliament that we would ensure the highest standards where our treatments involved human life and the treatment of embryos.

One of the latest scandals concerns so-called egg sharing.

Egg sharing is offered by some clinics with apparently laudable intentions. The clinics argue it makes treatment available to women unable afford IVF and who are ineligible for NHS treatment. The women agree to have their ovaries stimulated by drugs to produce eggs. Some of these eggs will be fertilised for their own treatment – others will be donated to other patients who cannot produce eggs. These recipients pay for their own treatment and for that of the donor.

It sounds reasonable – but in fact, it is fraught. Firstly, by regulation, the maximum number of embryos a donor can have placed in her womb is one or two. But because drug treatments usually result in the release of at least ten eggs –  and quite frequently many more – there may be many other eggs ‘left over’. This means that from a single donor’s eggs, a clinic will be able to simultaneously supply donor eggs for several patients – all of whom will be paying extra high fees for IVF treatment with egg donation.

The Mail’s investigation suggests that as many as ten recipients could benefit from one donor’s eggs, each being charged the same high fees.

This means that – for the clinics at least – persuading these women to donate their eggs can be extremely lucrative. It also means the that the clinics are incentivised to maximise the chance of getting as many eggs as possible. Therefore, they may be tempted to give the woman donating her eggs more stimulation than is strictly needed – or than is advisable from the point of view of the woman’s health. In addition, though heavier stimulation may increase the number of eggs obtained, it may also result in poorer eggs, with more chromosomal abnormalities an increased risk of miscarriage.

But the problem does not end here. While the donor’s own treatment may be unsuccessful – leaving her childless – it may well produce children for the other woman benefiting from her eggs. And although confidentiality means neither she, the donor, nor the recipient will know any details about the treatment of another patient, including if a pregnancy resulted, any child who is born can, by law, find out who their genetic mother on reaching adulthood.

It is therefore possible that, years later, a childless, grieving woman – whose own treatment has failed – can be traced and visited by a child whom she did not know she had had.

Given all this, it is simply astonishing that – caught by the Daily Mail’s camera – a professional in a clinic suggests that there is nothing for egg donors to worry about. Eggs? “they’re just cells”, she says as she shrugs her shoulders.

Another cause for concern is the increasingly fashionable idea of egg freezing. This is being sold by clinics as a way for career women to effectively put their fertility on hold.

But official figures on success rates from the HFEA are disconcerting. Between 2008 and 2014  – he dates for which full records are currently available – 3489 frozen eggs were thawed in attempts to produce a pregnancy for the patient who stored them. The records are difficult to interpret, but of those, about 77 pregnancies have occurred, with approximately 55 live births resulting from those pregnancies. That means the live birth rate per egg was 1.5%.

Even if you look only at the 589 eggs which were successfully fertilised and transported in to the womb as embryos, those 589 resulted in just  55 live births – a success rate of 9.3%.

So how does this reality compare with what patients are being told? One consultant in the Mail’s investigation is caught on camera asserting that if she freezes her eggs, her chance of pregnancy is 65%. Elsewhere, the website of one London clinic states: ‘Our egg survival rate following vitrification is very high, around 90%, which helps to increase the success of having a baby in the future.’

Most lay people would assume that, if they attend this clinic, they are close to being guaranteed a pregnancy. This seems very misleading, and the HFEA should step in.

But the HFEA does not always give full information about infertility – and there is also a lack of completely reliable information about IVF. This is precisely why we established an entirely charitable website at the Genesis Research Trust to give unbiased information.

For example, I believe that many women are undergoing IVF treatments unnecessarily. This is demonstrated by the fact that so many women get pregnant naturally after IVF has failed.

There are dozens of causes of infertility, each possibly requiring different treatment. Like chest pain, infertility is just symptom. But with chest pain you expect your doctor to do adequate tests to confirm you don’t have lung cancer, heart disease, a broken rib, bronchitis or a viral infection – or perhaps merely indigestion. But complain to your GP about infertility, and there’s every chance you will be simply shunted off to an expensive IVF clinic with little or no investigation by the GP or the clinic.

In 2014, around 45,000 patients were treated with IVF – but significantly, no cause for the infertility was found in over 18,000 of them, the HFEA reports. Some 40% had “unexplained infertility”, or were uncategorised. Clearly, many of these couples did not have had sufficient testing before IVF to ascertain the cause of their infertility. Treatment without making every attempt at a diagnosis first is thoroughly bad medicine. We are all outraged at a surgeon removing breast tissue without making a proper diagnosis, but we ignore what is happening in many infertility clinics.

When I mentioned this in a recent Radio 4 broadcast, I was joined by the fertility expert Adam Balen, who was then Chairman of the British Fertility Society, representing “good” practice across the UK.

I respect Adam who is a good doctor. But I was surprised how he downplayed my concerns. After the broadcast, a well-educated professional woman who had listened in called me.  She had been trying to have a baby for about a year, and had been referred to an IVF clinic with no testing. There, she was scheduled for IVF. She was also told to take Humira, a drug which riskily suppresses the immune system. She was given a private prescription but, worried, did not take it. Fortunately, the woman got pregnant without any further treatment.

To confirm what I had stated on the radio, I emailed Adam Balen twice, explaining how commonly I encountered this kind of malpractice.  Perhaps he did not get my emails as he didn’t respond.

The HFEA must be firmer. There are many good truthful doctors out there doing an ethical job caring properly for their patients. But women seeking fertility treatment are deeply vulnerable.  They are anxious, often depressed, and are in spiritual pain. Some feel that sex has become pointless; they cannot face their partner or friends, feel deeply guilty and will grasp any straw in forlorn hope. They are desperate.

It is our privilege as doctors to treat them properly and with respect. The avarice of just a few in this burgeoning fertility industry in something that all of us should be more ready to condemn.