The shaky reality of IVF – from a painful postcode lottery dictating your ability to have treatment on the NHS to the challenges of going through treatment while working – is something that you’ll be deeply familiar with, if you’ve ever taken that path. New data, though, has revealed another injustice at play, when it comes to the fertility intervention.
This spring, the Human Fertilisation & Embryology Authority (HFEA) revealed that there exist significant differences in the use and outcomes of fertility treatment over different ethnic groups. Though the average IVF birth rate per embryo transferred has increased across all groups, in 2020-21, Black patients between the ages of 18 and 37 had the lowest birth rates following the procedure, with Black patients aged 30-34 having an average birth rate of 23%, compared to 30% for mixed and white patients.
(Disparities for Black patients are the most stark, notes the HFEA, but issues are at play for other ethnic groups. Asian patients, for example, struggle to access donor eggs which match their own ethnicity, if needed.)
Black women and reproductive health
What, then, could be going on? Dr Annabel Sowemimo, a sexual and reproductive health consultant and founder of the charity Reproductive Justice Initiative, points to broader issues with reproductive health for Black women. ‘Black women have really poor reproductive health outcomes across their reproductive life course.’
‘For example, on average, it takes two years longer for a Black woman to be diagnosed with endometriosis, which can cause infertility issues. So by the time people are accessing infertility care, the disease is more advanced.’ She also notes that there’s a lower uptake for cervical smears in Black and Asian women, meaning some getting diagnosed with conditions later as they’re not attending screenings. Again, this can cause fertility complications, should a condition be diagnosed later on.
When seeking help, issues can arise, too. ‘When I talk to Black and Asian patients about their care, they often say that they’ve had to go back to the doctor with the same issue repeatedly, whether that’s for pelvic pain or heavy bleeding, before they get a referral to gynaecology.’ Another significant factor is age. The report shows that, on average, Black patients begin IVF almost two years later (at 36.4 years old) than the average patient at 34.6 years old.
Other statistics thread into this troubling picture. Nearly a quarter of Black women between 18 and 30 have fibroids – which can be a factor in fertility and pregnancy issues – compared to six per cent of white women, according to some estimates. By age 35, that number increases to 60%. One in 10 women have PCOS – another condition linked with fertility issues – but it is more commonly found in Black and Asian women.
Many Black women who suffer from these conditions have experienced ongoing health inequities. For some, these inequalities appear to have shown up in the world of fertility treatment.
The struggle to be approved for treatment
Naomi Griffiths is a 33-year-old teacher from Hertfordshire. She started IVF on the NHS in 2020, when she was 29, after months of trying without conceiving. (Tests showed that her then fiancé, now husband, has a condition which impacts the quality of his sperm).
One doctor questioned whether the couple had moved to their area – in which NHS IVF is offered – in order to qualify for the procedure. (They said: ‘You haven’t lived here very long. Did you move to the borough to get free IVF?’ She can’t be sure if this was linked to her race, but notes that ‘it felt like they were insinuating that we were trying to play the system.’)
Once the procedure was underway and funding had been agreed, she had a good experience: something she credits to a childhood spent dealing with medical professionals. ‘My mum had lupus and kidney failure and I was a child carer for her. It means I’m well versed in speaking to medical professionals.’
‘I might not have had other experiences that Black women have had when dealing with IVF as I can advocate for myself so well,’ she adds. The treatment was a success, with the pair’s baby girl being born in July 2021. Later, the pair conceived without fertility treatment. Their son is now 12 months old.
Though Griffiths was able to access NHS IVF, not everyone is so lucky – another factor Dr Annabel notes could be an issue when it comes to fewer Black women having successful IVF outcomes. ‘[Should you need to pay for private treatment] IVF is expensive.’ A single cycle of private IVF can hit the £5,000 mark, with many people requiring multiple cycles. According to government data, white British households are nine times as likely to be in the top 20% of total wealth as those of Black African ethnicity.
Cultural competency
Troubles with fertility treatment are reflected in the experiences of Black women over in the US. Danielle Wade, 38, is the CEO of a social media company in Colorado. She believes one potential issue for Black women trying to conceive via IVF can be a lack of Black medical professionals. There were few in her area, which, she believes, led to issues with cultural competency. ‘So many doctors aren’t willing to learn our medical history or try to understand some of the unique considerations that may come when dealing with Black women,’ she adds.
‘Our health concerns concerns are often not taken seriously, despite the fact that research shows that we have a higher rate of challenges with fertility and with a lack of access to [timely] care.’ After three egg retrievals and four embryo transfers eventually resulted in a twin pregnancy and, sadly, a subsequent miscarriage, she made the decision to step away from the procedure and now speaks about post-IVF life on social media.
The path forward
Where might we go from here? Dr Annabel thinks that more medical professionals should look at how they can help change the system. ‘We should ask ourselves how we can get people to access uptake services. Is there funding available in areas where there are higher Black and Asian populations? What are the barriers? [We need to] look at the overall systemic structures’, she says.
Dr Annabel says Black women – or any woman from a marginalised community – who is struggling with fertility should not get demoralised when she sees these stats. ‘It’s important to understand the whole picture. Most of the stats related to Black women having worse IVF outcomes aren’t related to biology. It’s often the circumstances related to accessing that treatment.’ She emphasises the importance of accessing information from organisations like Fertility Network UK and online communities like the Fertility Podcast.
‘It’s also important to build health literacy, like knowing what the fertility guidelines are for health professionals and the steps they should be following when giving you your care in your area,’ she says. This can translate to action. ‘If you think you aren’t getting a referral to a fertility clinic early enough, you can highlight these guidelines to your doctors.’
‘It’s important to build health literacy’
For their part, HFEA, the Royal College of Obstetricians and Gynaecologists and the British Fertility Society, and Fertility Network UK are calling for action to make certain that Black, Asian, and ethnic minority patients and their partners receive the same treatment as their white peers. ‘While it is good news that multiple birth rates in all groups have dropped, this new HFEA report highlights the health inequalities that still exist,’ said Professor Geeta Nargund, a member of the Human Fertilisation and Embryology Authority said.
‘It shows that there is a need for meaningful changes so that Black, Asian, and ethnic minority fertility patients and their partners are not left behind in access to and experience of fertility treatment.’
Startling statistics like this can be hard to read. Let’s hope that swift action on access is taken – and that outcomes improve for the next cohort of Black women navigating the challenging waters of fertility treatment.