Reports

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Please note my comments are based on my own experience of treatment. Black people are not a monolith - I am not speaking for all black women. I don’t believe the ‘blanket’ approach for all has been working and I think the more visibility/voices we have of the nuances of our experiences the better we will be able to inform next steps for the HFEA, practitioners and all of us within our minority ethnic communities.

Furthermore, I recognise that my comments are sound bites and I know in reality more elaborate discussions have to take place. I also appreciate that more research will need to be done to get more of the granular detail which will paint a clearer picture of the various determining factors of the data.

A lot of women I have spoken to do not find the data surprising, with many telling me that they have been saying a lot of this stuff for a while – and that in itself says a lot. In any case, this was long over-due and it is great in some respects to finally have something tangible that hopefully will be acted on by all the actors in the fertility sector, including patients.

Black patients reported higher rates of tubal factor infertility, accounting for 31% of patient-based infertility compared to the 18% average.  

Do you believe it is public knowledge – that infertility prevalence varies by ethnicity? If not, what actions would be helpful to get this information to patients? i.e. info from GPs; charities; HFEA?

• I certainly don’t think it’s public knowledge, but I think as women are increasingly telling their stories more openly… the knowledge is being shared. A lot of the women I have spoken to on my podcast report fallopian tube complications, but I don’t think it is common knowledge before you start trying to conceive. A lot of these complications only become realised once one is trying to conceive. Outside of that, I think generally most women are non-the-wiser.
• In terms of what actions would be helpful, I have been thinking a lot about whether a fertility MOT of some sort, from a particular age (25?) would be useful. Something that is standard procedure whether you are trying or not, maybe in the category of a routine smear test. Because I think it’s important to know about your fertility health before you even start trying, because if we consider when people access treatment it is usually after years of trying and I am not convinced it is the best time to learn for the first time that your body (or your partner’s) has contributing factors. I think couples should be coming into fertility treatment empowered by the knowledge of their fertility health, not necessarily seeking it at the point of intervention. And for me personally, that’s where a lot of the focus in terms of education and awareness should be – before or as soon as a couple start trying naturally.

Black patients generally started IVF at later ages than other ethnic groups at an average age of 36.4, compared to the national average of 34.6 in 2018.  

What are your thoughts on why Black patients are starting treatment later than the average patient?

• There are a few reasons and there is usually a huge focus on external factors, but we must not underestimate the internal factors that are also at play. The cultural stigma around not conceiving naturally is huge. If I use myself as an example, I went through a period of intense denial for about 2.5 years – I was in denial of the fact that it was taking us a long time to conceive and it was only due to being admitted into hospital for unrelated pelvic pain that I was catapulted into the world of fertility treatment. I am not convinced that I would have sought treatment myself, at least not for another few years because as a black woman, motherhood is a huge part of our identity and we are apparently ‘hyper-fertile’ so when you don’t fit that narrative, there is real shame and quite frankly anguish because in our communities, you have no way to make sense of it, you have no logical framework to explain why you are not falling pregnant because no one is talking about it. For me, there were no references at all to infertility or people who had experienced that – everyone talks about babies, but no one talks about the process and that sometimes it’s just not that linear. So, for a black woman to access treatment, she has to process all of this in complete isolation from her community and that’s a very difficult thing to do.

What are actions that we as the regulator (or the fertility sector as a whole) should be taking to reduce any external factors that may play a role in delaying fertility treatment among Black patients?

• I think it’s important for the fertility sector as whole to recognise that there is a deep rejection of infertility in black communities because many people, and I am saying this from experience, think the infertility diagnosis is the end – that you will not be able to have children. When I first came out with our infertility story on my blog, I cannot tell you how many people told me “infertility is not your portion, it’s not God’s plan for you” when in reality it was, and it is. So, I really think there is scope for an education and awareness piece, targeted specifically at minority ethnic groups about the options beyond the infertility diagnosis.
• The language and the imagery in any campaign or information must represent ethnic minorities too. It sounds trivial but all the pamphlets I have seen relating to IVF have white people only and relate only to their lived experiences. So, it’s not that far-fetched that a lot of people in my community think IVF is for white people and a lot more do not realise that they can apply for funding via the NHS. (Eligibility however, depending on where you are in the UK, is a whole other conversation!)
• I also think the messaging around seeking help, from your GP as a first point of call, after a year needs to be stronger or clearer – is it 1 year or is it 2 years? And how is this being communicated to those who needs to know? In my podcasting experience, I have found that a lot of black women/couples are not aware of this.
• Additionally, and this might be a bit ambitious, but I think any awareness piece needs to engage community leaders, religious leaders & families (particularly matriarchs) because these are the people that a lot of couples go to when they are trying to conceive and if these trusted authority/compassion figures are ill-informed, the impact of that must not be underestimated. And I say this as a very enlightened, educated, liberal thinker… my desire to have a child definitely clouded my normally sound judgement about what was being said to me by various authority/compassion figures in my life.

Black patients had lower IVF birth rates: for Black patients aged 30-34, the birth rate per embryo transferred was on average 23% compared to Mixed and White patients at 30% from 2014-2018. 

Is there an argument to provide tailored success rates to patients based on their ethnicity following our findings?

• I personally would be interested to know the tailored success rates for my ethnicity. Even now as a 32-year-old patient, the success rate I have been holding onto for hope is the that 29% success rate but now with the findings of this report, I am wondering whether than even applies to me at all. And I think it’s important to stress I know that it won’t improve outcomes for me, so some might say well what’s the point, but in IVF, well for me anyway, knowing is all you have. There is no guarantee of anything so knowing how the odds are stacked for/against me, manages my expectations. All of us go into IVF hoping it will work the first time but when it doesn’t, I found knowing the success rate helped me process that. And also, if for example the success is in fact lower than 29% for me, that difference might determine how long I do this for, how long I keep trying via IVF or how soon I turn to other avenues towards parenthood. So I think it’s crucial information, personally.

Multiple births are the single biggest health risk in fertility treatment for patients and babies. This includes increased risk of miscarriage, high blood pressure, pre-eclampsia, gestational diabetes, c-section and a 2.5 times increased risk of maternal mortality for patients. In the report, Black patients had the highest multiple birth rates of any ethnic groups at 14%, compared to a national average of 12% from 2014-2018.  We also know that there is a higher prevalence of maternal mortality among Black women (5 times higher than that of White women).

Do you think patients are likely to agree with whatever is recommended by the clinic? Are patients provided with enough information from the clinic to weigh out the risks involved when making the final decision?

• I think there is scope for an awareness piece here as well because when you have been trying for years, especially for black women by the time they access treatment, let me tell you twins do not sound like a bad idea at all! Almost every black woman I have spoken to, on & off my podcast has said they would have preferred twins because then they would not have to do IVF again but also, I think with twins we often see the end result when they are born and growing and cute, not always the pregnancy and potentially the complications around that. So, there is quite a hype around having twins, especially in the IVF community and I hardly hear people talking about the risks. I am now in my third round of IVF and I asked for a double embryo transfer and my consultant was in agreement – and there was no follow-up discussion around the risks because I also think consultants struggle with the timing. Is that the best time for a consultant to bring up complications when a patient’s last embryo transfer failed, and they are keen to go again? And also, do you bring it up now, or when the patient actually falls pregnant? I think it can be tricky to find the right time because as consultants, they are already dealing with fragile patients, fragile in their pursuit of parenthood. Having said all that, with the higher prevalence of maternal mortality among Black women and us having the highest multiple birth rate, it is quite concerning, and I agree that more needs to be done to inform patients of the very real risks.