INFERTILITY
Do you think infertility affects men as much as women? Is it only a problem in the West?
“The best way I can describe infertility is a cocktail of heartbreak at its purest, an unescapable grief.”
Infertility is defined as the inability to conceive within 1 year of unprotected intercourse. It has been identified as a global public health issue and is estimated to currently affect 15% of couples of child-bearing age. Infertility affects men and women, in roughly the same numbers. Despite this, the vast majority of fertility treatments have historically been focused on women.
WHO estimates between 48 million couples and 186 million individuals are suffering with infertility around the world, across all demographics and nationalities. Lower income countries are showing higher increases in rates of male infertility, and higher income countries are showing higher increases in rates of female infertility, although it is still not reported consistently in some regions.
A recent study shows that many individuals suffering with infertility do not seek medical help, for a variety of reasons: the proportion of couples seeking medical care was 56% in developed countries and 51% in developing countries.
“It made me feel like less of a woman, like a failure of a person. I couldn’t understand why this had happened to me, I was literally living my worst nightmare every day.”
The right to ‘found a family’ is enshrined in Article 16 of the Universal Declaration of Human Rights.
Those struggling with conceiving a child often suffer isolation, psychological distress, social stigmatization, economic strain, and marital discord which leads to further health issues. In some cultures, women are blamed for infertility even when the cause may be with their male partner, and women frequently experience violence, divorce, social stigma, depression, anxiety and low self-esteem.
In some countries, particularly in Africa, childless women are ostracized, disinherited and neglected by their entire family and even the local community.
“The loneliest hours were 1.30 or 2.30 or 3.30 in the morning, when I was lying there feeling like I had failed my wife with the one thing that she really wanted, and the one thing that I wanted more than anything else.”
The good news is that there have been huge technological advances in fertility treatment over the past four decades, with over 8 million babies born through In Vitro Fertilisation (IVF). Currently around one in three women undergoing IVF will have a pregnancy that goes to term. These rates are likely to increase as genetic screening of embryos during IVF becomes more common.
Many other treatments have been developed such as Intra Uterine Insemination (IUI), Intracytoplasmic Sperm Injection (ICSI) and egg, sperm or embryo donation, as well as fertility preservation treatments such as egg or sperm freezing for individuals who want to wait to have a family or who may be undergoing medical procedures.
But, according to WHO, the availability, access, and quality of interventions remain a challenge in most countries, particularly in low and middle-income countries (LMIC), where the costs of diagnosis and treatment are rarely covered through public health or employers’ insurance.
Inequities and disparities in access to fertility services adversely affect the poor, unmarried, uneducated, unemployed and other marginalised populations, including same-sex couples and single parents.
“During this time we came to realise how isolated we were. Our friends and colleagues were having no problems at all. Their photos and experiences on social media were a daily reminder of our failure. Why not us?”
In the US, a quarter of employers offer health insurance coverage for IVF and two thirds of large employers claim to offer fertility benefits (not all include IVF, though). Just one IVF cycle costs between $12 to $20k.
In the UK, where one in fifty babies is born through IVF, six out of ten IVF babies are paid for privately due to long NHS waiting lists and different eligibility for cover depending on where people live. One IVF cycle costs anywhere from £6k to £15k plus.
Compare that with Africa, where 98% of the population cannot afford or access IVF due to cost and a lack of fertility centres. 61% of countries don’t have any registered IVF units: that’s 33 countries out of 54. Even though infertility is just as big an issue, often with more severe ramifications, it is not seen as a funding priority due to limited resources already committed to fighting other health issues.
“We would never begrudge anyone the joy a child brings, but not having that ourselves felt isolating, almost like we didn’t belong. You smile every time a pregnancy is announced, genuinely happy for the couple, but inside you’re hiding heartbreak.”
Even when people can access fertility treatment, there is a ‘dark side’ to assisted reproduction.
It is a highly profitable industry, projected to be worth over $52 billion by 2025 and in some countries, it is allowed to operate largely under the radar of regulators.
More recently, genetic technologies have created new services, dubbed by some as ‘reprogenetics’, such as preimplantation genetic diagnosis, which screens embryos during IVF for chromosomal abnormalities or genetic disease and selects the healthiest ones to implant.
Another area of research is gene editing of embryos, which has the potential to eliminate chromosomal problems and serious hereditary disease, thereby maximising the number of healthy embryos for a mother to implant. And this is where things get more controversial.
Should we alter human embryos with good intentions, knowing that those alterations will pass down through all subsequent generations? The science world is still divided on this point because there is still so much to learn about how our genes interact, and the longer term impacts of gene editing on our health. It also raises many ethical and moral dilemmas. I cover these in more detail in the previous page: Gene Editing.
More fertility treatments are being developed all the time, with a much-needed more recent focus on male fertility. One example is editing sperm in men suffering with fertility problems, as DNA fragmentation has been shown to be a key cause of the decline in male fertility. More radical solutions, such as creating sperm and eggs from stem cells, are also being researched, and have already been tested successfully in mice. Any edits to these sex cells would also pass on to future generations.
Off Target explores what might happen if we take the leap and allow the genetic editing of human embryos, through the personal story of someone who is suffering with unexplained infertility and is desperate to conceive.
The novel dramatises the potential challenges when individuals and nations push the boundaries of what is legal and possible. And illustrates what some of those inadvertent impacts might be.
Further reading
Research on global infertility levels 1990-2017
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6932903/
A charity that provides guidance and resources about fertility
https://fertilitynetworkuk.org/
Resources for male infertility
https://himfertility.com/
The future of childbirth: fascinating article on potential new treatments
https://bit.ly/2OonvWN
Thanks to Deon Black for the use of the pomegranate image on the title page.