16 December 2022
Progress Educational Trust’s third virtual annual conference took place on 7 December 2022 entitled “Making Fertility Treatment Fair: Equality in Access, Equality in Outcome?”. Louisa Ghevaert was delighted to attend the event and join the debate addressing global reproductive issues and access to fertility care.
Women’s Health Strategy for England
Professor Dame Lesley Regan, the Women’s Health Ambassador for England and Professor of Obstetrics and Gynaecology at Imperial College’s St Mary’s Hospital Campus, and Honorary Consultant in Gynaecology at the Imperial College NHS Trust, discussed ongoing issues and challenges associated with women’s healthcare and accessing fertility treatment across the country.
Professor Dame Lesley Regan explained that the origins of the Women’s Health Strategy for England came about as way of seeking to re-address women’s health agenda and shine a light on taboo subjects in women’s health. She explained that that there was much ignorance around the enormity of the challenges women face accessing healthcare. This led to the “Better for Women” report in 2019 published by the Royal College of Obstetricians and Gynaecologists which identified ways to wrap healthcare services around women and deliver cost-effective solutions to prevent girls and women falling through the cracks of our health systems. It also called for the creation of strategies for women’s health based on a whole-of-life approach to meet areas of unmet need, including: contraception, abortion, assisted conception, menopause, breast cancer, cervical cancer, gendered lens across research and data resulting in policies based on a majority of male subjects and violence against women and its impact on health.
This in turn led in July 2022 to the government’s publication of its first ever Women’s Health Strategy for England. She went on to highlight that fertility is time-limited and that we need to do a lot more to prepare teenagers for this through education initiatives at school, in magazines and social media including through Tik-Tok video campaigns to explain to young women that ‘ovaries get worn out’ to help them ‘take charge of their fertility’. She added ‘So, I think the education side of it is absolutely crucial. And I don’t think it should just be schools, I think it should be all of us in society making sure that we give adolescents the tools that they need to make the best decisions for themselves later in life – and I include the boys in that as well as the girls.’
Professor Dame Lesley Regan concluded that she hoped that in the future the fertility aspects of the Women’s Health Strategy will be successfully implemented to include:
- Access to fertility treatment should be determined by need not geography and patients should be able to access 3 cycles of IVF on the NHS anywhere in the country.
- Those going through fertility treatment should have access to better information and ‘add on treatments’ should be regulated.
- The reproductive genomic sector should be subject to greater regulation.
- A large proportion of women’s fertility lies outside of mainstream medical infrastructure and this needs to change.
Infertility and the World Health Organization Agenda
Dr Gitau Mburu, a scientist at the World Health Organization (WHO) looked at issues associated with delivering universal access to fertility care across the globe. He explained that infertility represents a significant global burden, with recent estimates reporting that 48 – 72 million couples are battling infertility worldwide. He explained that there have now been over 8 million babies born through assisted conception as a result of the confluence of advanced maternal and paternal age. He added that this in turn drives fertility preservation needs, longer embryo freezing terms and issues accessing fertility treatment.
Dr Gitau Mburu highlighted the disparities in availability of fertility care globally, which particularly affects low and middle income countries. He explained that the cost and affordability of assisted reproductive technology limits access to care, resulting in most coverage in high income settings. He added that transnational reproduction is also a feature in most regions.
Dr Gitau Mburu explained that only 34 percent of countries have assisted reproductive technology legal regulatory frameworks. In addition, there continues to be low awareness of fertility and infertility, coupled with inadequate national fertility education initiatives globally. This results in poorer maternal and neonatal outcomes and many people overestimating their chance of conceiving. He went on to highlight the importance of the right to decide if and when to have children and that this should be part of the right to health and healthcare. As a result, he explained that a comprehensive range of actions are needed, including:
- Inclusion of infertility in national guidelines and policies on sexual and reproductive health.
- National health policies and strategies.
- Cascading of clinical WHO Guidelines.
Dr Gitau Mburu also followed on from Professor Dame Lesley Regan’s recommendations that if a teenager is old enough to be taught about contraception and avoiding unplanned pregnancy, then they are ready to be taught about the limits to their fertility potential as well.
Fertility perspectives from the Human Fertilisation and Embryology Authority
Julia Chain, Chair of The Human Fertilisation and Embryology Authority (HFEA), explained how the HFEA continues to work to improve access to fertility treatment for all. She acknowledged a level of frustration that the pace of change takes longer than expected and that inequalities in women’s healthcare remain. However, she welcomed the publication of the first Women’s Health Agenda for England in July 2022 and the ways it seeks to improve access to fertility treatment.
Julia Chain explained that the HFEA Register is the largest the world. Using its data, the HFEA has been able to shine a light on a range of issues that do not make easy reading including: access to funding for fertility treatment, that ethnic minorities have lower success rates, the shortage of ethnic egg and sperm donors and access to donor gametes.
Julia highlighted various areas that needed to be addressed, explaining that information is crucial for everyone. It is crucial that GPs have relevant information, new materials and workflows because not everyone at GP practices has the right information to support patients. This would reduce delay, resulting in older patients with less successful outcomes and declining chances of success for women due to age-related fertility decline.
Julia explained that funding of fertility treatment is also a big issue. There is a huge variance across regions, with the likelihood of funding on the NHS reducing with age. There is also a lack of NHS funding for fertility treatment for single women and lesbian couples.
Julia further highlighted disparities in fertility treatment for black and ethnic groups. The HFEA data showed that these groups were less likely to have a babies and they had worse outcomes in fertility treatment. In addition, there was an ongoing struggle for these patient groups to obtain ethnically matched donor eggs and sperm. Black patients started treatment later in life, which affected their success rates and overall Black and ethnic minority groups waited longer for treatment and more work was needed in this area.
Julia Chain explained that the cost of living crisis was another inequality impacting those trying to fund fertility treatment during current difficult economic times. She said that anecdotally, they were hearing that the numbers of treatment cycles were falling as people were concerned about self-funding cycles.
Julia Chain also explained that the Human Fertilisation and Embryology Acy 1990 (as amended) needed to be updated. She went on to say that it is ambitious to change this and that a consultation will launch in this regard in 2023. She explained that most of the Act is more than 30 years old and it needs updating to take account of societal changes and technological developments. She added that in 2023 the HFEA also planned to refine the traffic light system for ‘add-on’ treatments where there is no evidence of efficacy as there remains inequality in this area too.
Julia explained that the HFEA would continue to publish data where inequalities take place across the fertility sector to help bring about change. She added that with a smaller number of Integrated Care Boards replacing Clinical Commissioning Groups it would bring about a more manageable healthcare structure, with a women’s care officer appointed for each to try and make change happen. She went on to say that we also need to improve women’s health interventions before they access fertility treatment, for example to manage fibroids, to help improve their chances of success. She explained that this needs to become a joined up issue with the Women’s Health Agenda too.
Racial inequalities in accessing health and fertility care
There followed wide ranging sessions addressing access to fertility treatment and associated issues in Turkey, Belgium, Germany and Italy and equality of access in the UK for those with HIV. Dr Amanda Adeleye, Physician and Reproductive Endocrinologist at the Centre for Reproductive Medicine and Fertility in Chicago, then addressed disparities in fertility care for Black women which result in Black women having less successful outcomes than white women. She explained that fibroids occur more frequently in women of colour and at an earlier age. She went on to say that it is possible that hormonal or anatomic differences differ by race as well and this may be a factor influencing fertility treatment outcomes. She explained that there was also an historic foundation for disparities in healthcare by race and that systemic racism exists but may be hard to accept. As such, more work is needed to understand and address these issues, along with a need to increase diversity in the workplace to tackle unconscious racial bias.
Vanessa Haye, writer and commentator on fertility and pregnancy then provided further insights about the issues and challenges experienced by Black and ethnic minorities in accessing healthcare. She highlighted the Birthrights Report in May 2022 which published the results of a year-long inquiry into racial injustice in UK maternity services. It demonstrated that it is racism, not broken bodies, that is at the root of many inequities in maternity outcomes and experiences and its findings that “Black and brown people avoid interactions with medical professionals through fear of potential prejudice and discrimination”. She went on to highlight that in addition to racism, there are other factors at play including: sexism, ageism, lack of research, cultural myths perpetuated by media portrayals, stratified reproduction and lack of awareness and community. Further sessions then addressed the challenges associated with fertility preservation for women, fertility in males after spinal cord injury, diverse family structures and accessing fertility treatment as trans people.
Overall, Progress Educational Trust’s 2022 AGM shone an illuminating light on the wide-ranging and complex challenges which continue to impact access to health and fertility care, underpin gender and racial inequities and undermine successful outcomes.
Need an expert fertility lawyer? If you would like to discuss your situation or you require specialist fertility and family law advice and assistance please contact Louisa Ghevaert by email Louisa@louisaghevaertassociates.co.uk or by telephone +44 (0)20 7965 8399.