Siobhain McDonagh (Mitcham and Morden) (Lab)
21 Mar 2018, 1:40 p.m.
I beg to move,
That leave be given to bring in a Bill to amend the Human Fertilisation and Embryology Act 2008 to make provision about the welfare of women undergoing any medical, surgical or obstetric treatment services provided for the purpose of assisting such women to carry children; and for connected purposes.
I refer Members to my entry in the Register of Members’ Financial Interests. I would like to begin by thanking right hon. and hon. female Members from throughout the Chamber for supporting the Bill, including my right hon. Friend the Member for Enfield North (Joan Ryan), my hon. Friends the Members for Sunderland Central (Julie Elliott) and for Hornsey and Wood Green (Catherine West), my right hon. Friend the Member for Cynon Valley (Ann Clwyd), my hon. Friends the Members for Westminster North (Ms Buck), for West Lancashire (Rosie Cooper), for North Tyneside (Mary Glindon), for Kingston upon Hull West and Hessle (Emma Hardy), for Leicester West (Liz Kendall) and for Stretford and Urmston (Kate Green), the hon. Member for Oxford West and Abingdon (Layla Moran), my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes), my right hon. Friends the Members for Don Valley (Caroline Flint) and for Barking (Dame Margaret Hodge), my hon. Friend the Member for Feltham and Heston (Seema Malhotra), the right hon. Member for Meriden (Dame Caroline Spelman), the hon. Member for Edinburgh West (Christine Jardine) and my hon. Friend the Member for Lincoln (Karen Lee), who herself worked in a fertility clinic before joining us in the House.
Madam Deputy Speaker, 26 years ago the Human Fertilisation and Embryology Authority was established to regulate the new frontier of medicine brought forth by in vitro fertilisation. The sector has subsequently transformed into a multimillion-pound industry, with more than 5 million children having been conceived thanks to IVF. Because of the Human Fertilisation and Embryology Act 2008, the HFEA rightly works to protect the welfare of children before providing IVF treatment, and it is fundamental that this should continue. Notably, however, there is an absence of provisions in the Act regarding the welfare of the women who are undergoing the treatment. As a result of the huge increase in the use of IVF, not only by women who have problems conceiving but by those such as single women and same-sex couples, we have a dawning understanding of the prevalence of cancer diagnosis among women who have gone through IVF. In the light of the overwhelming evidence that drug protocols can cause women extremely adverse health effects, including a risk to life, I believe that there is a clear case for amending the Human Fertilisation and Embryology Act to ensure the welfare of women.
One of the main health risks to women undergoing IVF is ovarian hyperstimulation syndrome, or OHSS. It is triggered by the over-stimulation of the ovaries caused by hormones injected during IVF treatment. However, as the Act does not explicitly make stipulations about the welfare of the woman, the HFEA is unable to monitor or regulate guidelines on clinical practices relating to the administration of drugs and dosages during IVF treatment. There is therefore a total lack of monitoring and control of the drugs given to women.
One third of women undergoing IVF suffer from some form of OHSS. In severe cases, there is clinical evidence of fluid in the abdomen and chest, a reduction in urine output, a significant disturbance of blood biochemistry and a thickening of the blood, with an imbalance of the clotting system. It can even be critical, causing a woman to have renal shutdown and the fluid in her abdomen and chest to be so severe that it causes her to have respiratory distress syndrome. I have chosen to describe the symptoms graphically because I believe that all Members should be aware of the devastating nature of this preventable condition. A staggering 3% to 8% of women will suffer from moderate to severe OHSS during a cycle of treatment, and it can be life-threatening. Scientific studies have even indicated about three deaths per 100,000 cycles of stimulated IVF treatments. Let me clarify that: critical OHSS has caused women to die right here in the UK, but the outdated measures in the Human Fertilisation and Embryology Act prohibit us from understanding the true scale of the issue and preventing it in the first place.
It is accepted that almost all women with critical or severe OHSS, and some with moderate OHSS, will require hospital admission, and current regulation dictates that this should be reported as an adverse incident to the HFEA. The HFEA should then work in collaboration with the Medicines and Healthcare Products Regulatory Agency on dealing with the adverse effects of drugs used in IVF treatment. So clinics are required to report to the HFEA any cases of severe OHSS occurring as a result of treatment, but there is powerful evidence of wholesale under-reporting. More than 67,000 cycles of IVF are carried out in the UK each year. A shocking investigation by the Daily Mail last year found that 836 emergency hospital admissions for severe OHSS had occurred during 2015, even though the HFEA database reported just 60. Furthermore, the evidence is clear that collecting more than 15 eggs during IVF indicates a significant risk of OHSS, yet the HFEA recorded that in 2012 more than 3,400 women had more than 20 eggs collected.
Such widespread evidence of the welfare of women being compromised is deeply disappointing, because OHSS is a preventable condition. There are reliable predictors that allow the adjustment of the dose of stimulation to prevent the vast majority of cases, with such treatment being equally successful in terms of live birth rates. Lowering the stimulating dose is a win-win situation for the woman, whose wellbeing is protected, and for the NHS, which does not have to foot the bill for treating emergency admissions.
When I brought this issue to Parliament in 2016, the then Under-Secretary of State for Health stated that women were warned of the potential risks before starting treatment. However, we are dealing with a vulnerable group of women who are desperate for a family and who are easily exploited by being told that the side effects of high ovarian stimulation are the price of success. That simply is not true. These are completely avoidable side effects that changes to the Act can and must prevent.
OHSS is not the only danger to women undergoing IVF. The use of off-label intravenous immunology drugs, which are potentially harmful and of no proven benefit, comes with a health warning from the Royal College of Obstetricians and Gynaecologists. The HFEA collects no data on what drugs and drug dosages are administered to women undergoing IVF because the Human Fertilisation and Embryology Act gives it no authority to do so. Furthermore, because of restrictions based on confidentiality for couples undergoing fertility treatment, the HFEA has no power to monitor the consequences of current treatments on the short-term and long-term health of the women. That has to change, because a voluntary reporting system simply does not work. Let me make this clear: this condition is life-threatening, and it is entirely preventable for the tens of thousands of women undergoing fertility treatment every single year. The lack of concern about the welfare of women during IVF treatment is a scandal that cannot continue to exist.
I should like to summarise the crucial amendments that I believe must be made to the Act. There should be an explicit added commitment to safeguard the welfare of women. The HFEA should be required to collect information about all drugs and dosages administered to women during IVF treatment and early pregnancy. Finally, the Act should be amended to link the HFEA registry with hospital, cancer and death registers, to enable the accurate recording and publication of the links between IVF treatment and incidences of severe OHSS, cancer and mortality among women. I sincerely hope that the House will recognise its duty to ensure that IVF continues to enable the celebration of new life, but not at the expense of the women who are undergoing it. It is 26 years since the Human Fertilisation and Embryology Act was created, and it is high time that its inadequacies were reformed and the welfare of women recognised.
Question put and agreed to.
That Siobhain McDonagh, Joan Ryan, Karen Lee, Emma Hardy, Layla Moran, Dame Caroline Spelman, Julie Elliott, Caroline Flint, Rosie Cooper, Ms Karen Buck, Dame Margaret Hodge and Liz Kendall present the Bill.
Siobhain McDonagh accordingly presented the Bill.
Bill read the First time; to be read a Second time on Friday 15 June, and to be printed (Bill 189).