HFEA response to the Women’s Health Strategy
This submission provides the formal response from the Human Fertilisation and Embryology Authority (HFEA) to the government’s open consultation on the Women's Health Strategy
We are the independent regulator of fertility treatment and human embryo research in the UK. The HFEA holds one of the world’s largest Registers of fertility treatment where we hold a record of all treatments, partners, patients and children born as a result in the UK since 1991.
We support the government’s aim to create this new agenda where women’s health is the priority. Our response focuses on the importance of fertility and reproductive health for the Women’s Health Strategy on education, raising awareness, access to treatment and reducing inequalities for all patients. Our response also reflects on the impact COVID-19 has had on patient’s ability to access fertility treatment. To support our response, we refer to the findings of our most recent research and data into fertility treatment in the UK, including Fertility treatment 2019: trends and figures, Ethnic diversity in fertility treatment 2018 and Family formations in fertility treatment 2018.
Fertility treatment is a unique area of healthcare in the UK where the majority of treatment is privately funded. The new Women’s Health Strategy must focus on tackling all areas of inequality for patients and fertility treatment highlights where many of these inequalities arise.
1. Background: the changing trends of fertility treatment in the UK
1.1 Due to the changing trends of fertility treatment that we have seen in the last 30 years and the significant impact infertility has on women, reproductive health and its service should form a central part of the Women’s Health Strategy.
1.2 In 1978 the world’s first In vitro fertilisation (IVF) baby was born. Since the HFEA was set up in 1991, there have been 1.3 million IVF cycles and 260,000 DI cycles resulting in around 390,000 babies. This included a tenfold increase in IVF cycles from 6,700 in 1991 to 69,000 in 2019. Of particular significance because of the high health risks of multiple births, the multiple birth rate in fertility patients has dropped from 28% in the 1990s to 6% in 2019. Birth rates from IVF have increased over time with the average birth rate per embryo transferred at 24% in 2018, compared with just 7% in 1991.
1.3 In our Family formations report, we highlighted how family structures have changed over time with IVF birth rates per embryo transferred highest for patients in female same-sex relationships (31%), followed by patients in heterosexual relationships (23%) and single patients (17%); differences are likely due to age and infertility factors. Patients in same-sex relationships use the cost-reducing IVF egg sharing programmes more so than single patients and patients in heterosexual relationships. The use of donor sperm and eggs has increased and was used in 12% of all IVF cycles in 2018. In 2009 the law changed to allow unmarried and same-sex couples to both be named as the legal parents without having to adopt.
1.4 Improvements in technology have not only improved treatment and outcomes but have allowed fertility preservation for those who are undergoing cancer treatment, those in the armed forces, for those who are not ready to have a family and transgender or non-binary people by enabling eggs to be frozen and stored successfully.
1.5 As well as seeing changes in the numbers of people using fertility treatment, the range of families developed as a result and some of the health risks reducing, fertility treatment has become a unique area of healthcare in the UK where over 60% of treatments are funded by patients themselves. For women’s health, this is a highly unusual situation where patients are
being asked to assess detailed health information and make spending decisions, often involving many thousands of pounds.
2. Fertility and reproductive health as a key focus for the Women’s Health Strategy
2.1 A key focus of the Women's Health Strategy must be raising awareness of fertility, the need for education, for women and men and more broadly wider and earlier access to General Practitioners (GPs) that will lead to earlier access to fertility treatment. The chance of a successful birth decreases with a women’s age, yet the NHS funding being made available for those in the younger age groups has reduced over time.
2.2 Funding is set at a national level in all Scotland, Wales and Northern Ireland. In England the funding is decided by Clinical Commissioning Groups (CCGs) leading to significant differences in regional NHS funding for IVF treatment. Availability of funding can vary from no funding to three funded IVF cycles, which depends on location and eligibility restrictions. Scotland provides substantially more NHS-funded treatment of IVF cycles (62%) compared with the other UK nations, Wales 39%, Northern Ireland 34% and England 32%. (Fertility treatment 2019: trends and figures).
2.3 There are also disparities by partner type with NHS-funded IVF cycles being more common for patients in heterosexual relationships (39%) compared to patients in female same-sex relationships (14%) and single patients (6%), and varying considerably by nation. There has been an increasing number of patients in female same-sex relationships and single patients undergoing treatment, particularly with donor insemination (DI). These differences are likely due to age and infertility factors, but further research is required to determine the reasons for these poorer outcomes. (Family formations in fertility treatment 2018)
2.4 There are several differences in fertility treatment across ethnic groups that need to be addressed. People from ethnic minority backgrounds undergoing fertility treatment are less likely to have a baby, with Black patients having the lowest chances of successful treatment. While disparities for Black patients are the most notable, other ethnic groups also have worse outcomes when going through fertility treatment. The struggle with access to donor gametes for ethnic groups is notable where Asian patients, who represent a larger proportion of IVF users at 14% whilst comprising 7% of the UK population, are struggling to access donor eggs of the same ethnicity if needed. (Ethnic diversity in fertility treatment 2018)
2.5 The average age of patients at their first IVF cycle has increased in recent years for Black patients from 35.1 in 2015 to above 36.4 in 2018. Research has suggested treatment costs as a major factor in treatment delays, which may indicate cost-related changes since 2015 in areas with higher proportions of Black residents.
2.6 The HFEA regulates NHS and private IVF clinics and provides information to fertility patients on our website, many patients experiencing fertility problems approach their GP as their first point of information. Therefore, it is crucial that a GP has the relevant knowledge to be able to advise patients on where to go for further specialist information. We encourage the creation of new information flows to support and engage GPs, practice nurses and patients and promoting fertility education materials to support people in making decisions as early as possible about treatment, donation, and surrogacy, ideally at the pre-treatment stage.
3. Covid-19 and its impact on fertility treatment
3.1 At the height of the pandemic in 2020, the HFEA made the difficult decision to suspend treatments carried out in HFEA licensed centres for the safety of patients and clinic staff and so that health professionals could be redeployed to focus on the COVID-19 response. The only treatment that was allowed to continue was fertility preservation for urgent medical reasons e.g., prior to cancer treatment.
3.2 On 11 May 2020 we issued instructions to the sector (General Direction GD0014) to provide clinics with the framework for enabling as many patients as possible to have safe treatment during the pandemic. Clinics were required to submit a COVID-19 Treatment Commencement Self-assessment to their inspector. The fertility sector has recovered well and reopened quickly, by 12 June 2020, 94% of private clinics and 76% of NHS clinics had reopened. By September 2020, NHS cycles were back up to a similar level to the same month in 2019, this occurred in June 2020 for private cycles. Although in early 2021, we have seen a slowdown in the NHS centres, largely due to the issues outlined in paragraph 3.3.
3.3 As a result of this closure many patients will have had their treatment delayed in 2020. Some patients will have had delays to tests and referrals due to the wider health system being at reduced capacity during the pandemic. We are not only concerned with the treatment that patients were unable to receive during this time, but longer-term waiting list means these problems will be ongoing. NHS funding is no longer available for women who are approaching their 42nd birthday or in some areas the funding would have been refused for women of a younger age. For these women, the delay due to COVID-19 would have been potentially devastating.
4.1 A key part of the Women’s Heath Strategy must focus on reproductive health and services. The disparities regarding NHS funded treatment adds to the inequalities experienced by patients. It is crucial that all patients and their partners receive the support and information they require throughout the treatment process. Providing the right information as early as possible is crucial in an areas of medicine where age is a key factor in a successful outcome.
4.2 Access to fertility treatments for all groups of patients is crucial. It is important that more work and research is done on exploring the inequalities faced by ethnic minority patients, which is why we are doing what we can to address this.
Review date: 16 June 2023