This final session of the Progress Educational Trust (PET)'s 2022 Annual Conference 'Fertility Preservation: Windows of Opportunity' featured four eminent speakers working in andrology, reproductive medicine and medical law.
Session chair Fiona Fox – founder and chief executive of the Science Media Centre, and former chair of trustees at PET – opened the session and introduced each speaker.
The opening presentation – 'Fertility Preservation for Women: Giving Hope of a Better Future' by Melanie Davies, professor of reproductive medicine at University College London – focused on fertility preservation for women with cancer, the largest group of people who require fertility preservation for medical reasons. She described how the preferred method has shifted over the last 20 years from embryo freezing to egg freezing, allowing women access to fertility preservation without a sperm provider. More recently ovarian tissue cryopreservation has become an option, which can be done more quickly when there is insufficient time for an egg collection cycle.
Professor Davies highlighted how challenging fertility preservation processes can be for people coping with a cancer diagnosis; however, the offer of fertility preservation is psychologically important, even if declined by the patient. Data on the efficacy of egg freezing is currently limited, as few women have returned to use their eggs. Furthermore, the case-specific reasons for egg freezing are not reported to the Human Fertilisation and Embryology Authority (HFEA), so statistics about the effectiveness of medical fertility cryopreservation for cancer patients is difficult to ascertain. Professor Davies called for the HFEA to consider including this information in data collection.
Professor Davies explained that numerous studies report patients with cancer feeling they had not been adequately informed about fertility options in a timely manner, if at all. A contributing problem is that oncologists are unsure what is available and where to refer patients in the fast-moving world of fertility treatments. Cancer treatment centres are not typically co-located with fertility centres, nor are there clear referral pathways.
As a result, Fertility Preservation UK was formed to provide an Oncofertility Network in the UK. The patient decision aid cancerfertilityandme was also highlighted as a valuable resource for fertility preservation and wider considerations, such as contraception. National Institute for Health and Care Excellence (NICE) clinical guidelines in 2013 give provisions for fertility preservation; however, these are inconsistently followed. For example, an initial ten years of storage is recommended after cancer treatment, but in some areas in the UK only five years are offered, which is insufficient given some hormone therapies can last five years. Finishing on a positive note, Professor Davies presented a picture of a baby born after ovarian tissue freezing, which was funded by Future Fertility Programme Oxford.
Continuing with the theme of fertility service provision for medical needs in the UK, the second presentation – 'Fertility in Males after Spinal Cord Injury: A UK Perspective' – was presented by Patrick Gordon, consultant andrologist and urological surgeon at Leeds Urology. He described what he called 'a big unknown' – the unique fertility difficulties faced by men after spinal cord injury (SCI). Primarily, he conveyed that there is a lack of standardisation in the care and information provided to patients, which is shaped by the experience and interest of their local urologist. This was illustrated by the fact that Gordon is the only male fertility specialist across 12 hospitals, covering 5.5 million people and two specialist SCI centres.
An interesting overview of how semen quality is impaired and erectile dysfunction is troublesome for men with SCI followed, noting that 90 percent of men can conceive with appropriate assisted sperm retrieval. The options for collecting sperm vary, according to the level of injury. Techniques include non-invasive options such as penile vibratory stimulation, which is effective for 86 percent of patients with the most common level of SCI. Increasing the frequency of ejaculation using this method can improve semen quality, which can be used for intrauterine insemination at home. For other levels of SCI, an electro-ejaculator can be used, usually under general anaesthetic. The price of this equipment is around £60,000, and according to Gordon, there are only two kits in the UK. Surgical sperm retrieval is another option more commonly used, where only small quantities of sperm are retrieved, and patients require assisted conception. However, not all patients will qualify for funding, and they may be unable to afford private treatment. Gordon closed by emphasising that it is imperative to link fertility centres with the 12 SCI centres in the UK.
The third presentation – 'Can We Make Fertility Preservation Fair for Trans People?' by Professor Sheryl Homa, scientific director of Andrology Solutions – seamlessly followed the theme of equity in the provision of fertility treatment, specifically focusing on preservation for trans people, where the issue of poor access to information was again evident. Acknowledging that this is a vast topic, Professor Homa stated that 75 percent of trans people are interested in having children, and feel that gamete preservation should be offered. In reality, however, uptake is low. This could be due to negative provider experiences, lack of information, poor access to services, high costs, and awareness of restrictions on using gametes in the future. Professor Homa argued that to overcome these challenges there must be communication, acknowledgement and understanding of the patient's identity, as well as a good awareness of a person's specific requirements. Fertility preservation is intrusive for a variety of reasons – the collection of gametes can lead to negative gender affirmation, or to delays to gender-affirming treatment. Gender binary documentation can add to distress throughout the process.
Professional bodies recommend that information and counselling for fertility preservation should be given to all transitioning people. Gender clinics may be set up to do this, but are not linked with fertility centres. Professor Homa shared her concern that some patients started gender-affirming treatment via hormone therapies bought online, which are not clinically supported. NICE guidelines state that all individuals undergoing treatment that may affect fertility should have access to fertility preservation, but a recent survey clearly shows that this is not the case, and that standardisation of fertility preservation policies is needed to provide equity of access.
The requirement for trans people to consider their future family plans when preserving gametes adds another layer of decision-making, as it often requires consideration of surrogacy costs and additional infectious disease screening at a time of gender affirmation treatment. UK guidelines require that gametes can only be exported for treatment abroad that can also be lawfully offered in the UK - so for example exporting gametes for treatment with anonymous donor eggs or perm would be prohibited. This requirement ultimately restricts treatment choices abroad using stored gametes, in a way that does not apply to people who can have their eggs or sperm collected as part of their overseas treatment. Professor Homa concluded that this law should be reviewed and called for an increase in provider awareness, training, and standardised access.
Continuing the theme of equity in fertility preservation, the last presentation – 'Stopping the Clock? Why Women Want to Freeze Their Eggs, and Why We Should Let Them' by Imogen Goold, professor of medical law at the University of Oxford – focused on the 'spot on' but nonetheless 'worn' metaphor of the 'biological clock'. Various quotes from women were shared, supporting the case for offering 'social' egg freezing (that is, egg freezing for reasons that are not primarily medical). The quotes touched upon the social pressure to enter into relationships, the strain on relationships, and wanting to have children only when one feels financially and emotionally ready to do so.
The striking statistic that a year of delayed motherhood increases earnings by up to nine percent across all professions suggests that these are quite rational motivations. Professor Goold also noted that 12 percent of the gender pay gap is attributable to leaving work and then re-joining after having a child. This confirms that delaying childbearing can positively impact women's work experience and appreciation of their skills. Professor Goold explored why some people still consider it better to have children earlier, with value attributed to being a younger parent, lower maternal risks, and reducing social harms that may be (perceived to be) associated with assisted conception generally. There is also the idea that fertility preservation gives a false sense of security and is misguidedly relied on as an insurance policy, implying that women do not understand the risks.
Professor Goold suggested that clinics should provide information to show clearly the success of fertility preservation for different age groups. She commented on the phenomenon whereby men are celebrated for having managed to father children at an older age, whereas women doing this are regarded with suspicion. Acknowledging that women may overestimate the capacity of biology and/or technology to enable older motherhood is not a reason to restrict social egg freezing, but instead adds weight to the argument for ensuring that good quality information and support is provided, enabling women to make well-informed decisions.
The session concluded with a wide-ranging discussion, with input from the audience. There was an agreement that raising fertility preservation awareness among clinicians would be the first step to increasing uptake for all patient groups, followed by ensuring clear patient referral pathways to fertility clinics. The lack of consistency in funding availability across various types of fertility treatment and preservation was mentioned, here as in earlier conference sessions, but suggestions for how this might be overcome were lacking. Lack of funding poses the most stubborn barrier to making fertility treatment fair in the UK. Funding aside, providing greater choice and information was a change that the speakers unanimously felt was obtainable.
In summary, the speakers and chair in this final session of the conference captured the range of diverse issues surrounding fertility preservation and the range of people impacted, with some constructive suggestions for how things might be changed for the better. These 90 minutes successfully covered what could have been a whole conference in itself.
PET would like to thank the sponsors of this session (Vitrolife) and the other sponsors of its conference (the Anne McLaren Memorial Trust Fund, ESHRE, the Edwards and Steptoe Research Trust Fund, 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)