IVF “add-ons”; a shock and a scandal? No, not really. For anyone working on the coal face of fertility treatment, add-ons are a reality driven by patient demand.
The BBC Panorama report on IVF “add-on” treatments last week caused quite the furor in the world of fertility treatment. IVF add-ons have become commonplace as increasingly patients want to do as much as they can to improve their chances of IVF success. This is hardly surprising, given that, on average, only one in four IVF cycles will result in a live birth. The research commissioned by Panorama and carried out by Oxford University’s Centre for Evidence-Based Medicine found that most add-on treatments were not supported by high-quality evidence of efficacy. In fact it found that 26 of the 27 treatments had insufficient evidence. These add-ons include pre-implantation genetic screening (PGS); endometrial scratch (which was the only add-on clinically proven to show some benefit); and additional bloods and immunology testing, to name but a few. New, experimental treatments with a significant or growing body of anecdotal evidence behind them are how many of these treatments could best be described. Prices range from the hundreds into thousands of pounds, adding a significant amount of money onto an already expensive IVF cycle. I have worked in this industry for over 20 years and have supported thousands of couples through IVF. Couples come to me to help them find a way forward; often when they feel like they are not getting anywhere with conventional medical pathways. I sit very much in the central ground; I work with IVF clinics and I support couples to conceive naturally or through IVF. Because of this I have a unique insight into the world of IVF and of natural conception. The first thing to say is not all IVF units are equal so it is unfair to tar everyone with the same brush. The second thing to say is that all couples are not equal and every couple’s situation is unique. The third thing to say is that it is often the patients pushing the clinics to do whatever they can to make the cycle a success. Fertility patients are very well informed, they do their research, the go on chat forums, they share information, they find out what treatments are being offered in leading international clinics, and they will often be determined to do whatever they can to make their treatment a success. Many times I have patients complain to me; “why did the clinic not offer me these add-ons at the beginning?”. Of course patients should expect to be given treatments for which there is good evidence. But the truth is that IVF research has been slow to progress and not much has changed since Louise Brown (the first test tube baby) was born in 1978. Precisely because the success rates remain low, patients are willing to try techniques for which there is limited evidence. Perhaps transparency and not evidence is the important factor here. Researchers can be slow to gather good evidence, in part because it is extremely challenging to do for fertility treatments – the nature of infertility does not lend itself to the kind of randomized controlled trials which are the gold standard for evidence based medical treatment. But does that mean that patients should be denied access to cutting edge treatments which could potentially increase their chances of conceiving? Patients should be free to make informed choices. It is the responsibility of the clinic to explain that evidence for treatments offered may be lacking or inconclusive. And as long as the treatment is not harmful then it is up to the patient to decide which treatments they are willing to try to potentially improve their chances. My personal observation of IVF clinics is most are guilty of not informing patients of basic information on what they can do themselves in order to improve their chances of conception. Even when couples request basic information on simple lifestyle factors and ask; “is there anything else we can do?” they are frequently not informed. There is plenty of available research for men and women on stress, weight and BMI, but many clinics do not advise couples on these issues. Men’s weight is frequently ignored, and other lifestyle factors like nutrition, sex, alcohol, heat sources (male) and smoking are also often not discussed. This is one of the biggest complaints I receive from patients regarding IVF units. Patient’s report feeling “disempowered” at being told there is nothing they can do to improve their chances of conception. They are then left to search the internet to fill in the gap themselves, which can lead to information overload and yet more anxiety. This is very often where I come in, and I have seen for myself the difference that addressing these lifestyle factors can make, in terms of increasing IVF success, or of achieving natural conception. I was not surprised or shocked by the findings of Oxford University. Perhaps the real scandal in all of this is just how many couples are going to private IVF clinics in the first place. Couples who, in many cases, should be entitled to NHS funded cycles, according to NICE guidelines. The postcode lottery for NHS funded IVF creates huge levels of inequality in the system. But perhaps this ‘scandal’ is not quite such a headline grabber as “clinics offer unproven treatments.” Equally scandalous is the fact that some clinics keep offering couples IVF cycle, after IVF cycle, where no diagnosis has been made and no explanation as to why it keeps failing. Research needs to catch up with the demands of patients. But, with or without evidence based research, patients will demand these treatments in the hope that one of them might just be the factor which tips the scales in their favour. The reality is that if couples can’t get the treatments they want, they will go to countries where they are available. My view is that an integrated approach works best; where couples are given good advice on nutrition, lifestyle and stress management. Treatments such as acupuncture combine well with IVF – and there is an increasing amount of evidence based research to back this up. Used appropriately, some add-ons may improve the chance of IVF success in some couples. For many of those desperate to be parents and ploughing huge amounts of money into the endeavor; that is enough. Make an appointment with Emma