HFEA background: Westminster Hall debate on Women’s Health

Summary

• The Human Fertilisation and Embryology Authority (HFEA) is the independent regulator of fertility treatment and embryo research across the UK. We hold data on fertility treatments and outcomes from 1991, have had a number of regulatory world firsts, and are long recognised as providing robust oversight of this sometimes-contested area of public policy.
• Fertility treatment is an unusual area of healthcare (and particularly women’s health) in that most treatment is paid for by patients themselves. Less than 27% of IVF patients receive NHS funding nationally.
• Funding is outside of the HFEA regulatory remit but inequalities in access to and outcomes of fertility treatment are demonstrated by our data and there are specific inequalities experienced by Black and ethnic minority patients, as well as same-sex couples.

Issues

1. Geographical inequalities of access to NHS funding in different parts of the UK (and particularly within England) have been growing in recent years with disparities giving rise to a ‘postcode lottery’ of access to NHS treatment. Overall 16% decrease in number of IVF cycles funded by the NHS in recent years (change from 2019-2021) with the lowest decrease of 1% in Scotland and the greatest in the North West of England at 27%. Although most private and NHS fertility clinics treat both private and NHS patients, most patients are paying for their own treatment – an anomaly in UK healthcare.
2. Inequalities by ethnic and family groups are stark in access to and outcomes for Black and ethnic minority patients, as well as those in female same-sex relationships. Heterosexual white couples have better access to NHS funding.
3. UK law is increasingly out of step with the way in which the modern fertility sector is developing which makes it difficult to support patients as more parts of their treatment take place away from regulated environments (the physical clinic) into national and international online service provision. This leaves patients with little recourse when things go wrong and the HFEA with no powers on the parts of treatment where patients need support. Recent work with the Competition and Markets Authority and Advertising Standards Authority has emphasised the inadequacy of our regulatory powers in the modern market.
4. The HFEA has made proposals to modernise current fertility law so it better deals with current treatment and research and future proofs it for upcoming scientific developments. The proposals cover four areas which would have the effect of lowering the regulatory burden, increasing patient protection, supporting and developing innovative scientific developments and recognising the role that new technology plays in the market.
5. The HFEA response to the 10-year plan consultation identified three areas to improve the delivery of fertility treatment in the UK: Reduce the time taken from advice in primary care to specialist fertility treatment, to maximise success; action to reduce inequalities in access to and outcomes of fertility treatment; and ensuring the HFEA has up to date powers to enable patients to be protected in a competitive fertility market.

Background

• Treatment numbers - Over 52,500 people have IVF in the UK each year. The proportion of NHS-funded IVF cycles is now at its lowest level since 2008.
• Infertility affects around 1 in 6 people - Many do not require treatments such as IVF but referrals to specialist services at an early stage is crucial, and we know from the Royal College of Obstetricians and Gynaecologists (RCOG) that waiting lists for gynaecology services are longer than ever. If a referral is delayed, then the likelihood of successful treatment is reduced and there is a greater cost to the public purse.
• Demographic trends - Since the HFEA was set up in 1991, we have seen changes in who is having fertility treatment, with the average age of first time IVF now over 35 years old, compared to the average age that women have their first baby of around 29 years old. Age matters - for patients aged 18-34 the birth rate per embryo transferred is 35%, for patients aged 43-44 using their own eggs it is just 5%. As the average age at which women have their first child is increasing (in England and Wales: from 23.7 in 1971 to 29.2 in 2022), some patients may not find out they need IVF until their chances of success are low.
• Inequalities - There are wide inequalities in access to and outcomes from fertility treatment based on ethnicity and family type. Black patients have nearly 10 percentage points lower IVF success rates than White patients and IVF cycles funded by the NHS have declined most among Black patients. IVF funding is less likely for single patients and female same-sex couples who are increasing in number of IVF cycles year on year.
• Private / NHS - Assisted reproduction is an unusual area of healthcare in England, as the majority of patients pay for treatment themselves. This is for several reasons including, differences in funding by ICB in England (adherence to NICE guidelines is low), patients falling outside eligibility criteria (e.g. BMI), inequalities based on ethnicity or family type. In all these cases, accessing fertility related diagnostic tests and screening and treatment, if needed, is most cost effective at a younger age when success rates are at their highest. Most NHS fertility centres treat self-funded patients and vice versa in private centres.
• Access to advice and treatment - To effectively enable people to access treatment earlier and, therefore, provide more cost-effective fertility treatment when needed, patients need informed primary care services who can refer them for specialist screening, diagnostics and treatment. Given the pressures on general practice, this may be best performed in a women’s health hub or neighbourhood centre. Having fertility services situated within a specialist centre or wider gynaecological service can often lead to more streamlined experiences for patients where they can be seen by the right specialist at the right time, sometimes avoiding the need for more costly and invasive IVF all together.
• IVF is increasingly safe thanks to good UK regulation – The rate of multiple births, the biggest risk of IVF to mother and baby, is now down to 4% from a high of 28% in the 1990s and over 99% of fertility treatment cycles are carried out without incident.
• The use of donor sperm and eggs is increasing - Over 70,000 donor conceived children born since 1991 and now accounts for around 1 in 170 of all UK births and over 4,000 births per year since 2019.
• Donor-conceived people now have the right to information about their genetic origins - Those born from donation after 2005 can access identifiable information about their donor from the HFEA once they turn 18. This is an area of high interest for the media.

25^th February 2025