Last week I attended Progress Educational Trust’s evening debate about Add-Ons in fertility treatment. These are the mostly unproven additions to treatment protocols like intralipids, assisted hatching, endometrial scratch and many others. It was a fascinating evening in many ways, not least watching the tensions rise between clinicians as those working in the NHS challenged their private sector colleagues on both the ethics of offering scientifically unproven treatments and the large amounts of money that are charged for them.
I had gone to the event because PET debates are always worth while and I knew little about the subject. It’s not something that comes up when I talk with people hoping to become parents by donor conception but I know that they are likely to be struggling with whether or not to seek one or more of these Add-Ons, particularly if they have had many unsuccessful cycles of treatment. As pointed out by Sally Cheshire, Chair of the HFEA, success rates for IVF (with or without a donor) have now reached a plateau that is hard to see beyond and desperate potential parents are vulnerable to exploitation of the promises held out by adding that ‘magic something’ to the mix that will make a treatment work for them.
Both Adam Balen from the NHS unit in Leeds and Simon Fishel, founder of the private CARE group of clinics, drew attention to the fertility sector as being a very fast moving and innovative one. ICSI (intra-cytoplasmic sperm injection), for example, was discovered accidentally and began to be used clinically without any real trials. It has given very many men the opportunity to become genetic fathers but follow up studies of children conceived this way are beginning to show fertility problems for boys. Fishel noted that many of the treatments and protocols in standard use today (including IVF itself) were red-flagged and seen as unethical when first introduced. He claimed that “it was not easy to acquire evidence” and that these “unevidenced breakthroughs” have brought about the relatively high success rates we have today. He cited Holland as being a country that only uses evidence based medicine in fertility treatments and has much lower success rates as a result.
I am not going to expand on how the evening progressed as that is not my main purpose here but suffice to say it unsurprisingly turned out that money was the bottom line – shortage of funds for research (fertility treatments not being seen as sufficiently serious by funders) and the huge sums being charged by some clinics for unproven Add-Ons. If you want to read more about the event, PET will be producing their own summary and I highly recommend their free on-line publication Bio-News. Also the new HFEA website (up shortly) which will give ‘traffic-light’ guidance to patients about Add-Ons.
I really wasn’t there for donor conception purposes, except that as the evening wore on I was struck more and more forcibly by how some medics find it convenient to put aside evidenced based medicine and their own gold standard, randomised controlled trials, when it suits their purpose (and pocket). I cannot recall how many times those of us in the donor conception world have tried to convince fertility doctors of the importance of ending anonymity for donors or that early ‘telling’ is best for families and children, only to be condescendingly asked ‘where is the evidence for this?’ Explanations about secrecy over the years having made decent research very difficult or lack of funding for something as ‘niche’ as the well-being of donor conception families, are tossed aside as they assert their status as doctors who only take notice of evidence-based research. In addition, several times during the evening panellists talked about the importance of following up children conceived via ART because ‘we have a duty of care to the families of patients.’ I suspect that sadly this duty of care only refers to possible consequences of medical procedures rather than taking into account how a child might feel about not being able to find out information about their donor because the clinic had referred their mother for treatment abroad. It remains a scandal that UK clinics do this too often without explaining the differences for the child between being conceived inside and outside the UK.
Fertility doctors are not bad people but, as Raj Mather from St. Mary’s, Manchester said, there is a culture in every clinic that is set by the owners or senior clinicians and this influences the way that all staff, including doctors, work. He implied and I am translating: If the bottom line is money then what is offered to patients will be influenced by this. I also believe that if the prevailing culture is simply on making babies (as well as making money) and not on the psycho-social well-being of future children, then we are all poorer for it.
As Sally Cheshire said, STEP UP, FERTILITY CLINICS.
Link to Bio-News summary of the event Add Ons: Do They Add Up http://www.bionews.org.uk/page.asp?obj_id=814093&PPID=814006&sid=690