Written by: Julia Margo, CEO of Genesis Research Trust
This year marks the 40th anniversary of the first IVF baby. Since then, so many critical breakthroughs have been delivered in reproductive biology and healthcare that the treatment portfolio would be totally unrecognisable to a patient in the 1970s: many more families have been able to deliver healthy babies thanks to these developments. And Genesis Research Trust has been directly responsible for many of them, funding the research and development that led to, among others, the first screening programme for cervical cancer, the invention of tubal microsurgery to treat infertility and the first pre-implantation diagnosis of chromosomal abnormalities in embryos.
As a newcomer to the sector, I’m incredibly proud to be part of an organisation and sector that delivers real change for families suffering the heartbreak of infertility and loss. Yet when I look at the bald statistics I am reminded of how far we still need to go.
After falling for a decade, infant mortality is starting to increase again in the UK; 9 babies are stillborn every day, one of the worst rates in the developed world. We will not meet the Government’s national target of reducing harm by 2020 on current trajectories. Despite progress in keeping more premature babies alive, we have not managed to reduce the UK preterm birth rate: 60, 000 babies are born preterm each year, with 4,000 dying before their 5th birthday and 50% of those born before 34 weeks suffering lifelong disease and disability: this is still the leading cause of infant death globally.
For parents, our own research shows high levels of PTSD among women who had experienced miscarriage, and still there is no proper service support in place for these families. There remains a failure across services to recognise role of and impact on fathers of baby loss and infertility.
Many of these issues can only be addressed by extensive investment, not only in medical research but in women’s health and reproductive healthcare services, but these issues are not, and have never been, the burning issue of the day. Less than 0.2% of charitable giving goes towards reproductive medicine and it has little political traction despite the widespread suffering and high prevalence of the issues – 1 in 4 couples will experience a miscarriage, 8, 000 families lose a baby at birth every year and an estimated 3.7m couples are struggling to conceive at any one time.
Underfunding is impacting medical progress and service delivery, with further cuts to IVF in the pipeline. Moreover, there is an enormous cost to the NHS and the economy in failing to address issues at the start of life, which often lead to long term dependence on healthcare, but this has not been properly communicated.
Real change for families will only come when reproductive healthcare and women’s health has moved to the top of the agenda politically, socially and economically.