Breaking Down Barriers: Who Will Lead the Way?

The first session of the Progress Educational Trust (PET)'s 2022 Annual Conference – 'Breaking Down Barriers: Who Will Lead the Way?' – featured three eminent speakers working at the heart of fertility health policy, both nationally and internationally.

First to speak was Professor Dame Lesley Regan, professor of obstetrics and gynaecology at Imperial College London. Her talk, 'A Women's Health Agenda: Redressing the Balance' focused on the recently launched Women's Health Strategy for England and several related reports published in the past few years. Collectively, these 'shine a light on taboo subjects in women's health' and issues that 'really trouble women' – including access to fertility diagnoses and treatment. In working on these reports, she said, she had been 'struck by how ignorant many people were about problems women have trying to access care'.

She reflected on how the issues brought up in one report 'Better for Women' published by the Royal College of Obstetricians and Gynaecologists (RCOG) in December 2019 were later brought up again in 'A Women's Health Agenda: Redressing the Balance'. Professor Regan said that in her current role as Women's Health Ambassador, she will draw upon this work to encourage the UK Government to look again at IVF funding. According to Professor Regan, this should include provision of good quality information at all stages of the reproductive lifespan, including in schools, and wellbeing services promoting good health rather than relying on reactive measures suggesting proactive healthcare versus disease intervention.

Apart from highlighting continuing disparities for women seeking and accessing healthcare, Professor Regan told the audience that she has come to realise that if you seek change, this must be achieved by small incremental steps and you must be prepared to move things on slowly. Despite the fact she thought she had 'painted a rather gloomy picture', she was optimistic about the future and said she would hold the Government's 'feet to the fire'. She hoped that if she were asked to speak at a future event, she would be able to report on improvements and that 'the fertility side of the Women's Health Strategy would be becoming a reality'.

Dr Gitau Mburu, a scientist at the World Health Organisation (WHO)'s department of sexual and reproductive health and research, then spoke to the topic 'Achieving Universal Access to Fertility Care: A Global Perspective from the WHO'. He outlined how infertility and subfertility amount to a significant global burden and explained how this – plus disparities in provision and availability in relation to geography, GDP and other factors – have a negative impact on overall health, as well as gender equality. As part of the global health agenda, Dr Mburu also explained that responses to infertility are central to achieving sustainable development goals.

The WHO has created substantial resources and strategies over decades, most recently starting to develop guidelines on the prevention, diagnosis and treatment of infertility. While more than eight million babies conceived via IVF have been born worldwide, and we are now seeing the benefits of significant technological advances and greater availability of treatments, better awareness is needed of the confluence of advanced maternal/paternal age, fertility preservation needs, longer-term freezing, and a growing repertoire of experimental add-ons to existing interventions.

There are also implications for gender, reproduction and choice, safety, regulation, legal and equity of access issues related to fertility care, he said. The WHO's 2019 Global Health Policy Survey found that many countries have inadequate policy guidance on fertility care, coupled with differences in financial support (and therefore access) and regulation, which differs significantly even in the minority of countries where laws are in place. Additionally, there is a lack of fertility education and awareness, and an accompanying lack of access to good information.

Dr Mburu said that a comprehensive range of actions are needed to achieve universal access to fertility care. These include ensuring infertility features in national guidelines and policies on sexual/reproductive health, a comprehensive approach to fertility education and awareness to 'reach the unreached', and increased health system investments in fertility care on both the 'demand' (patients) and 'supply' (providers) sides. He ended by reminding us that fertility care is part of the right to health and a fundamental part of human rights and human dignity. Barriers still exist, he said, which must be addressed through national and international jurisprudence and operationalisation of already existing international commitments.

Finally in the session, we heard from Julia Chain, chair of the Human Fertilisation and Embryology Authority (HFEA). Beginning her talk 'The HFEA: Working to Improve Access and Outcomes for All', she explained that upon beginning her role in April 2021, she was 'optimistic and ambitious that the HFEA could help reduce inequalities in access to and outcomes in fertility treatment' and that the law could be modernised to reflect modern medical practice, social changes and expectations. Linking back to Professor Regan, she added that while she remains optimistic, it is 'a little frustrating that real change always takes longer than one expects'.

Chain explained that by law all licensed treatments and outcomes must be reported to the HFEA. Its register is the largest of its kind and, she said, has been used in recent years to 'shine a light on some of the inequalities we know exist', including geographical discrepancies in provision, differences related to relationship status or family type, and the fact that people from ethnic minority backgrounds have lower success rates following fertility treatments, with black patients having the lowest chances of success. Such inequalities extend further, she explained, pointing out that ethnic background also affects access to sperm and egg donation and the availability of donated gametes, as highlighted in a report published earlier this month.

To help rebalance these inequalities, Chain said there were key areas the HFEA wants to see addressed. First, there must be good access to information about both fertility and infertility. This should include the 'creation of new information flows to support and engage GPs, practice nurses and patients and the promotion of fertility education materials to support people, ideally before they become "patients"'. Because GPs are the first port of call for many people needing treatment, access to appointments, GP education and information are crucial. White patients are more likely to speak to a GP sooner when trying and failing to conceive. This may contribute to inequalities in outcomes that we already know about, don't yet fully understand, but must take steps to address.

Second, Chain said that although outside the HFEA's remit, fertility funding – including significant differences in regional NHS funding for IVF – must be addressed. Long NHS waiting lists affect couples' chances, as many are forced to delay starting treatment. Additionally, the likelihood of funding reduces with age, and there is a serious lack of funding for same-sex female couples and single women. Linked to funding, the cost-of-living crisis will impact those who are planning or wish to undertake fertility treatment. Third, she highlighted changes to family structures and the increasing number of treatments provided outside the typical 'patient with a male partner' model, including increasing numbers in female same-sex relationships, or patients with no partner. Issues such as 'shared motherhood' and the use of gametes from HIV+ patients raise particular issues for which legal solutions are being sought (see BioNews 1155).

Finally, Chain explained that changes to the Human Fertilisation and Embryology Act, the legislation governing the provision of licensed fertility treatment across the UK, are still intended. While the HFEA had hoped to consult on this by now, 'wider political turmoil' has caused this to be delayed until 2023. Returning to optimism, Chain said that she is 'determined to get proposals before parliament at the earliest opportunity possible'. Of course, she added, the HFEA can't do this alone, and works with other organisations in the fertility sector – including the British Fertility Society, the RCOG and Fertility Network – on how to reduce inequalities. The HFEA looks forward to working closely with Professor Regan on related aspects within the Women's Health Strategy.

Some lively questions from the audience followed the presentations, where all speakers were drawn back to common themes. All viewed education about fertility and infertility as key, across the board. This extends to related areas in, but not limited to, women's health – including menstrual healthcare, diagnosis and treatment of pelvic pain, and even abortion.

Getting the information out is key, and while there is obviously a role for health professionals and educators in doing this, there is also a need to communicate with younger people in modern ways (such as via TikTok). All speakers were also united on the need for collection and dissemination of good quality data, as this helps to identify where inequalities are, both nationally and globally. Finally, the need to keep up with changing social and cultural norms was highlighted as important, both across the globe and at home.

PET would like to thank the sponsors of this session (the Edwards and Steptoe Research Trust Fund) and the other sponsors of its conference (the Anne McLaren Memorial Trust Fund, ESHRE, Vitrolife, Born Donor Bank, CooperSurgical, Ferring Pharmaceuticals, Merck, Theramex, TMRW Life Sciences and the Institute of Medical Ethics).

Register now for PET's free-to-attend online events in 2023:

• Your Guide to Genetics and Genomics in the Fertility Clinic (18 January 2023)
• 100 Years of Daedalus: The Birth of Assisted Reproductive Technology (1 February 2023)
• Understanding Miscarriage: Pregnancy Loss after Fertility Treatment (15 February 2023)
• When to Stop Storage: Improving Conversations About Unused Embryos (1 March 2023)