Louise Joy Brown is an extraordinary woman. Extraordinary by virtue of her conception – the first IVF baby. On 25 July 2018 Louise Brown and the world are celebrating her 40th Birthday.
You might think that there is nothing special about a 40th birthday but this is no ordinary birthday. In the last 10 years, finally, IVF has come of age as a scientific “discovery” and from it so many other areas of advancement have sprung; encompassing legal, ethical, medical and technological developments.
Although too late for Patrick Steptoe who died in 1988, Bob Edwards received a Nobel Prize in 2010 and was knighted in 2011, recognition coming just 2 years before his own death. It was also too late for Jean Purdy, whose clinical and laboratory roles have been highlighted recently, bringing her to the attention of those of us who had been unaware of her huge contribution, which has been rightly and publicly celebrated.
Thanks to the public recognition of those pioneers, this decade birthday is being celebrated around the world. It is a commemoration of achievements that transformed the management of fertility problems.
IVF has enabled so many couples to build families that otherwise might never have been. These families aren’t simply a child or maybe two for a couple to bring up to adulthood but families in the truest sense of the word – grandchildren for grandparents, cousins and future parents, aunts and uncles. Making a family is not just life changing for one or two people but has inter-generational impact.
Today, IVF has been assimilated into accepted practice. This by virtue of the HFEAct for which we are indebted to Mary Warnock and her great ethical insight. The Act underpins the regulation of current practice and ongoing research through license to the HFEA.
The news of Louise Brown’s conception, and her birth, drew huge public interest. The response was fascination and alarm in equal measure. Whilst there was rejection of the science and scientists by the public, press and peers, this did not mean that her existence was neglected.
Although that direct interest in Louise Brown has therefore waxed and waned there have been key milestones. Perhaps most significant was the interest when she herself (after her sister) became a mother naturally (what did we think was going to happen?), and we were again reminded that she is extraordinary.
Louise Brown’s very existence is extraordinary. However she is also extraordinary in her very ordinariness. She is normal. There should be something ordinary about Louise Brown. She was a child born and brought up in the 70s and 80s; she is a wife and mother and works for her living. It is right that she is ordinary – is that not the point?
Our patients, probably very much like her parents, don’t want to be extraordinary – they want to be ordinary people with ordinary lives who raise families in an ordinary way. Yet some of them have to go to extraordinary lengths to make that happen. Why? Because we have yet to acknowledge that the lack of this ordinary ability to found a family leads to extraordinary suffering. We have yet to accept, despite the undoubted success and safety of IVF treatment, that it is an ordinary NHS treatment, for an ordinary medical problem, which ordinary couples and individuals face, day in and day out.
The idea of a postcode lottery for health service commissioning is not unique to infertility but it is certainly the most brazen and most generalized. This is not a drug that has been singled out to be too costly, this is wholesale neglect of a specialist area of medicine. This neglect is not confined to IVF itself, but in some areas has an impact on the ability even for patients to get a proper medical opinion, to be properly investigated or to have access to any other appropriate treatment.
Moreover, even when a diagnosis and opinion are available and there is a good chance of successful treatment, social limitations may be applied by commissioners, which override any clinical decision making. This is unique to fertility patients. And we find ourselves failing to treat a significant fertility issue for one partner because the other has been judged to be undeserving. Making such judgments within our National Health Service the norm may lead to compromise in our own social right to other areas of health care.
It is of course necessary to consider cost-effectiveness and not provide treatment where there is little chance of success. But guidance for IVF has rightly been given by NICE (the National Institute for health and Care Excellence); it is largely ignored.
Some people say that fertility treatment is a luxury, that the desire to have children is a lifestyle choice. I would argue that that drive is as innate as the need for shelter and sustenance. Whilst as humans we can make a rational decision or choice not to have children (not always without regret) it remains for many a deep and fundamental need.
We also live in a world where second families and alternative family building is common. Traditionalists may not like the change in social patterns but that does not make those families or indeed those parenting models less valid nor indeed inferior. As physicians we consider the welfare of the child but our job is to treat the medical problem. As a society we must be careful not to make prejudiced judgments, which may infringe basic human rights and needs.
Driving healthcare into the private sector may seem a natural step for some, but the commercial sector has been criticized roundly in recent years for potentially exploitative practices in reproductive medicine. Centres must work with integrity around treatments where evidence is poor or lacking. That includes those treatments which remain experimental or still require proper validation. These simply must not be promoted for commercial gain. Thankfully, it does not appear to be a sector-wide issue but one that must be taken extremely seriously.
Louise Brown came from extraordinary parents who along with many others aided the research that brought about her birth. They were able, ultimately, to build the ordinary family they so desperately wanted and went to such lengths to bring about.
That is not the end of the story however. Having had the spotlight of public interest swing her way over her 40 years of existence, Louise Brown was not satisfied with ordinary. Harnessing her celebrity, she has not balked at shouldering a responsibility for promoting the very technology that gave her her being. She has become an ambassador for IVF and technologies following. More importantly she has become an advocate for patients and patient rights speaking out on the inequities prevalent in our NHS fertility provision and for the promotion of reproductive health provision worldwide.
On the occasion of her 40th birthday, Louise Brown has picked up the public interest that has once again swung her way and used it for the good of those yet to come.
Louise Brown you are an extraordinary woman and I and the British Fertility Society salute you for it. Happy Birthday!
Originally published https://britishfertilitysociety.org.uk/2018/07/25/happy-birthday-to-louise-brown-bfs-chair-dr-jane-stewart-reflects-on-40-years-of-ivf/