Let's get fertility preservation right for everyone
Dr Sue Avery
Progress Educational Trust14 August 2018
The UK's Equality and Human Rights Commission is threatening legal action if 'outdated' NHS policies, which it says discriminate against the transgender community, are not changed urgently. Specifically, it is concerned that trans people should have equal access to fertility preservation services. Of course, anyone whose reproductive potential is threatened by the treatment they need should have an equal opportunity to access fertility preservation. But equal to what?
The media stories this action has triggered imply that cancer patients have routine access to NHS-funded egg and sperm freezing. The Observer recently stated: 'Patients undergoing other forms of medical treatment that may impact on fertility – such as chemotherapy – are routinely offered access to fertility services.' In reality, this simply is not true. To be fair, the Times noted that after cuts to fertility services, cancer patients are 'now not automatically being offered the option to freeze their reproductive cells'. But the truth is that many of them never were.
Part of the problem is that many commissioning bodies don't have clearly defined policies funding for gamete freezing. To be fair, some commissioners have developed clear and inclusive policies on fertility preservation. The majority – but not all – of our local commissioners in the West Midlands fall into this category, and the national picture is patchy.
Egg freezing for female cancer patients in particular is something that some commissioners struggle with. These funding requests require fast responses and can't wait for a committee that meets once a month. When you have a young woman who has only just been diagnosed with cancer and needs urgent radiotherapy, being told that you should have applied for funding earlier is unhelpful, to say the least.
On the other hand, offering fertility preservation should not be seen as a box-ticking exercise. There is often a great deal of pressure on oncologists and other clinicians to refer patients for gamete storage, to ensure that everyone is given the choice. But freezing just is not possible or appropriate for everyone, and expectations need to be managed as early on in the pathway as possible.
If a young male patient is too ill to walk unaided, let alone produce a semen sample, it is perfectly reasonable not to refer him for freezing. To do so is likely to lead to a failure he can do without.
A woman in her mid-forties, whose referral for egg storage we rejected, protested bitterly on the grounds that her local Clinical Commissioning Group had no upper age limit for funding egg freezing. Sadly, biology does impose an age limit. Despite this obvious limitation, her oncologist felt that, by referring her, they had discharged their duty. Better management of her expectations at that stage might have saved a lot of distress.
Then we must ensure that patients are making a genuinely informed choice, when the choice is offered to them. Anyone who wants, or thinks they want, fertility preservation should have clear counselling about the process, the ways their gametes might be used and the chances of success if they are used.
In fact, fertility preservation is really something of a misnomer, or perhaps an exaggeration. What we are actually doing is giving patients a chance to have their own genetic child, created using their gametes. It is by no means certain that they will have the opportunity to use their gametes, or that a pregnancy will arise if they do. Having frozen gametes just means a genetically related child is possible, as opposed to impossible. These patients will still be infertile.
Patients also need to be warned that, even if they receive funding for preservation, there is no guarantee that they will get funding for treatment in the future. Assuming there is some NHS funding available, they will need to meet the eligibility criteria like all other fertility patients.
Finally, the decision to freeze or not to freeze, whatever the clinical context, must be the patient's. Inevitably there will be others beside the patient who feel they have a stake in their reproductive potential. However, the legal process for consent makes it clear that only the gamete provider, regardless of age, can consent to the storage and use of their gametes. This right is one of the central pillars of the Human Fertilisation and Embryology Act.
Parents and partners may struggle with this if an individual exercises their right not to proceed with storage. A threat to future generations may cause individuals to lose perspective. I recall one difficult case of a mother whose teenage son refused to produce a sample for freezing. She asked, in the presence of her son, whether we could just anaesthetise him and extract the sperm surgically. I suspect that they had some interesting conversations later.
In January of this year, The British Fertility Society published an excellent, eminently rational guideline on preservation of female gametes, but the impact of this depends on developing a synergy between diverse groups of people with diverse interests, the clinicians providing the treatment that threatens fertility, the providers of storage, the commissioners, and the patients themselves.
We need equal access and consistent funding policies for all patients whose fertility is threatened by the treatment that they need, whatever that treatment maybe. We need clinicians to refer patients appropriately and in a timely way in relation to their treatment. We must ensure that patients understand the potential and the limitations of gamete storage, have the opportunity to make truly informed choices – and feel free to say no, whatever the pressures. And we need more education and better communication between commissioners, referrers and providers so that together we can do better for all these patients.
The number of referrals for fertility preservation we are receiving, including referrals for trans patients, has risen considerably in the last few years. But we have no idea how many are still slipping through the net – and for some the referral is just too late.
Reproduced with permission from BioNews, an email and online sources of news, information and comment on assisted reproduction and genetics.