Fertility preservation: Cancer survivors are being let down by NHS IVF policy

My fiancé Ben was diagnosed with testicular cancer in January 2020, aged just 23, shortly before the first COVID lockdown. Our world stopped. We were young, scared, and suddenly forced to confront decisions that no couple expects to face so early in life.

One of those decisions was fertility preservation. Ben's oncology team was clear – the chemotherapy and surgery required to save his life were highly likely to leave him infertile. We therefore acted on medical advice, and his sperm was preserved at Bourn Hall Fertility Clinic in Wickford before his treatment began. This was funded with the explicit intention of safeguarding our chance of having a family in the future.

At the time, Ben's BMI was assessed and confirmed to be below 30. His fertility preservation was approved and funded in good faith, as part of his cancer care.

The cancer treatment saved Ben's life, but – exactly as predicted – it left him infertile. Urology and Oncology at Ipswich Hospital have since confirmed that there are no other options for us. If we are to have a child that is genetically ours, IVF using the sperm that was frozen before Ben's cancer treatment is our only chance.

That is where we encountered a devastating and deeply illogical barrier. We were told that the funding appointment could not take place, because of Ben's current BMI. This was not because weight had caused his infertility – it hadn't. Nor was it because weight Ben's weight affects our IVF treatment – it doesn't. Rather, this is solely because BMI is listed as a rigid eligibility criterion in the IVF policy of our local Integrated Care Board (ICB), Suffolk and North East Essex.

In our case, BMI has no clinical relevance. The sperm being used was preserved years ago, prior to cancer treatment. Ben's current BMI does not affect fertilisation, embryo development or implantation. Rather, implantation and pregnancy outcomes relate to the health of the person who will carry the pregnancy – me.

Private fertility clinics acknowledge that BMI is a blunt and outdated tool, which is why many do not rely on it in isolation. And yet in our case, BMI has been applied mechanically, without discretion and without any apparent consideration of individual medical context or exceptional circumstances.

What has been particularly distressing is that our case does not appear to have been clinically advocated for at ICB level at all. Instead, we were advised verbally and via email that we did not meet the relevant criteria, and were directed to raise a complaint ourselves through the Patient Advice and Liaison Service if we wished to challenge the decision. We are now in the midst of that complaint process, which has been escalated to the chief executive, but the emotional toll of having to fight so hard simply to be heard has been immense.

There is a cruel contradiction at the heart of this situation. Had Ben not survived cancer, I would legally be able to access his stored frozen sample. We signed the relevant consent forms acknowledging this possibility when his fertility was preserved. The fact that he did survive, and that he is now a fit, physically active young man of muscular build, is the very reason we are being denied NHS-funded treatment.

Survival, in effect, is being penalised. This cannot be ethically or logically justified.

BMI itself was never designed as a measure of individual health. It was developed in the 19th century by Adolphe Quetelet – a statistician, not a physician – and was intended as a population-level tool. It does not account for muscle mass, body composition, fitness, or metabolic health. Many health professionals now recognise that BMI, when used alone, can be misleading and harmful.

For Ben, the impact has been deeply damaging. Having survived cancer and lost his fertility, he is now effectively being body-shamed by a system that once sought to protect him. The mental and emotional strain of this sequence of losses is hard to put into words.

Our experience has made one thing painfully clear – there is a serious gap in NHS IVF funding policy when it comes to cancer survivors. Fertility preservation is offered to patients in good faith, often at a time of extreme vulnerability, with the promise that it protects future family-building. But if access to IVF can later be blocked by unrelated and clinically irrelevant criteria, then that promise is hollow, and the purpose of fertility preservation is fundamentally undermined.

This issue is not isolated. Other cancer survivors, such as Mollie Mulheron, have faced similar barriers due to rigid ICB policies. Her case was raised in the House of Commons last year by her MP, Oliver Ryan, highlighting the postcode lottery that exists for access to fertility treatment across England (see BioNews 1247 and 1248). We now find ourselves experiencing a similar injustice.

In response, we have started a public petition calling for greater discretion and fairness in NHS IVF funding for cancer survivors. The petition has gained tens of thousands of signatures in a short space of time, demonstrating how strongly people feel about this issue.

We have also been supported by leading experts and advocates in this field, including Professor Richard Anderson, Professor Georgina Jones, and Sarah Norcross (director of PET, the Progress Educational Trust) as well as the UK head of communications at Change.org. Our story has been covered by regional and national media including ITV News (see BioNews 1324), the Daily Mail and the Mirror.

This attention has not been sought lightly. We spoke out because we realised this is bigger than us.

We are not asking for special treatment. We are asking for discretion, proportionality and common sense in exceptional medical circumstances. NHS policies already allow for discretion – we are simply asking for it to be used. The ICB has indicated that it is reviewing its fertility funding policies, which is encouraging, but it remains unclear what that review entails or whether it will meaningfully address situations like ours.

Cancer takes enough – it should not continue taking even after survival. No one should be offered fertility preservation as part of their cancer care, only to discover later that it is effectively inaccessible due to an unrelated administrative rule. Surviving cancer should not come at the cost of being denied a family.

This is about fairness. It is about trust. And it is about ensuring that policies designed to protect patients do not, through rigidity, cause further harm.