When the Human Fertilisation and Embryology Authority (HFEA) published data in March showing black patients had the lowest chances of successful treatment in the UK, it came as no surprise to me at all.
While the Ethnic diversity in fertility treatment 2018 report by the HFEA showed that people from ethnic minority backgrounds undergoing fertility treatment were less likely to have a baby than white patients, it showed that black patients were the most affected group of all (see BioNews 1089).
As somebody who has been on my own fertility journey for 14 years now, my experiences have caused me emotional pain, anguish and frustration!
Let me take you back to the start of my journey, so you can understand why these results were not shocking...
My grandmother had ten children, my mother fell pregnant when she was 19. Motherhood, I assumed would come naturally to me, I came from a big family and had never heard of anyone having any infertility issues. Subsequently, I was in denial after two years of trying to conceive, before I sought help. This is mainly as there was, and still is, stigma attached to infertility in my community. There is a culture of silence, a lack of knowledge and awareness that simply does not help.
According to this report from the HFEA, black patients generally started IVF at later ages than other ethnic groups, at an average age of 36.4, compared to a national average of 34.6. This is one of the contributory factors why the success rates are lower for black women.
Time is of the essence when starting IVF, early intervention is key as one important factor is egg quality which tends to diminish with age. If I had known this at 30, I would have done things very differently.
After two years of trying to conceive, I finally visited my local GP who tested my anti-müllerian hormone (AMH) and follicle-stimulating hormone (FSH) levels to reveal the health of my egg reserve. The advice from my doctor was that I should start IVF treatment as soon as possible. The doctor referred me to have an ultrasound scan, which is an essential part of infertility testing. The scan revealed I had several large fibroids, and it was recommended they should be removed before I commenced any IVF treatment.
Black women are disproportionately affected by fibroids relative to white women, and are two-three times more likely to have fibroids, which may be the cause of infertility unless they are removed. This is just one example of the underlying issues black women are more likely to present with, which can result in lower IVF success rates. Another underlying issue black patients are more likely to be affected by is tubal factor infertility, which accounts for infertility in 31 percent of black patients, compared to the 18 percent on average, the HFEA report showed.
I had to wait a further six months for my operation on the NHS causing further delays to starting my IVF treatment, which invariably had a direct impact on my chance of IVF success.
This report is simply not good enough. I want to know what is being done to tackle these issues? We speak about diversity and inclusion, but I have not seen any visible evidence of attempts to improve outcomes for black women or other ethnic minorities from the HFEA or professional bodies, and much more support is needed from the black community. We all need to work together in unison to make rapid change.
What would I have done differently? Firstly, as we know with any health issue early intervention is the key. I should have checked my reproductive health a lot sooner, and taken personal responsibility on a periodic basis to check my AMH and FSH levels.
You take your car for an MOT, fertility should be treated in exactly the same way. Furthermore, having periodic ultrasounds is also very important. For example, fibroids often get bigger if not treated or removed. Removing smaller ones could be done via keyhole instead of having an open surgery, which entails a greater recovery time and a greater risk of tissue damage in the uterus.
I challenge the HFEA or professional bodies to launch an awareness campaign to clearly educate ethnic women so they are better informed about reproductive health. These issues are not widely known in the community. The stigma issue needs to be addressed through reaching out to a number of representatives in the black community to support with the campaign. Black women need to be the face of it, being inclusive is of paramount importance and will ensure effectiveness. A significant amount of work needs to be done in this area. Leaflets about health risks disproportionately affecting black women should be made readily available in doctors surgeries and in NHS hospitals.
Another area of huge concern, and again an area where not much progress has been made, is that white egg donors were most commonly used among most ethnic groups.
This is very sad, especially when the UK is very diverse and there is no shortage of black and Asian women in this country. But some black and Asian women have needed to use white egg donors, meaning their child would have little resemblance to their mother, which could have long term mental health implications for the mother and for the child in the future.
Why is there such a shortage of black and Asian donors? I appreciate this is due to fewer donors coming forward. However, its time the HFEA and the professional bodies took the lead and began serious action.
Again, awareness campaigns are needed, perhaps targeting universities where there are plenty of young Asian and black students who I am sure with the right educational campaign and targeted message would be more than willing to help.
My own personal and friends' experience is that black women are having to wait a long time for a suitable egg donor, which COVID-19 has made much worse. A number of intended parents end up going overseas out of desperation. I am sure many women would prefer to have the treatment completed in their home country, for obvious reasons.
One positive change that would be so rewarding to see, is for UK IVF clinics to have a better selection of black donors, instead of black women and Asian women being reminded while they are undergoing fertility treatment that our society is not fully inclusive.