An earlier version of this article first appeared in the magazine Positively Women, Summer 2010.
There is much talk in the press at the moment about fertility treatment and whether medical professionals working in the field are unrealistically raising expectations of ordinary people needing intervention to conceive; whether women are leaving it too late to start a family, whether there ought to be age limits imposed on women, and whether fertility clinics are just a huge baby-making machine exploiting the desperate. With as many as one in seven UK couples experiencing difficulties conceiving, this is a topic that most people have views on.
During my early thirties, the idea of motherhood and having children frequently crossed my mind, but the idea never got off the ground. I had just finished my education, established a demanding career with exceptionally long hours, and had fallen in love. A few years later, the idea of having children started to fill my every thought and I was just about to raise the discussion with my then partner when we were both diagnosed with HIV. Swiftly, I consigned the prospect of becoming a mother to the history books; we would just have to remain childfree, a prospect that I found terribly upsetting. It was not until some months later that my GP, I presume trying to bolster my flagging spirits, voiced that I should live a fairly long life and I could, if I desire, get pregnant. I thought he was truly mad, but I rushed home, did the research, and I was amazed that he was correct. For the first time in months, I felt hopeful. Women with HIV can have a baby free of HIV, in fact, we can even have several.
But there was a snag. Whilst my fertility was perfectly healthy, we would nevertheless require the helping hand of ICSI, a type of fertility treatment, on account of my then husband’s fertility. ‘Humph,’ we thought. ‘Is fertility treatment readily available to people living with HIV?’ Reassured that HIV would not make any difference to accessing fertility treatment, we naively assumed that finding a hospital and a consultant would be straightforward. Stumbling across the HFEA (Human Fertilisation and Embryology Association) should have been a God send, but in actual fact, finding accurate information relating to HIV and fertility treatment through their website was, and is, a nightmare. Being an optimist, I assumed the key to the problem lay in using their search facility to narrow down the list of fertility clinics offering treatment to patients with communicable viral infections.
I was given short shrift by the hospitals I eventually emailed with the standard response being, ‘we don’t offer treatment to people with HIV.’ When I questioned their decision on the grounds that I was entitled to know the reason(s) why my then husband and I were being denied a first consultation as well as fertility treatment given that we adhered to the Swiss Statement and our viral loads were undetectable, one of three things happened. My email was either ignored, or I received a reply, which was curt and excessively defensive in their refusal to offer an explanation. Or, I was told that they did not have the appropriate lab equipment.
Frustrated by my lack of progress, I decided it was time to speak in person to these clinics. Perhaps the personal touch would help. According to the HFEA website, the London Fertility Centre treats people living with HIV, when in actual fact, my telephone enquiry revealed otherwise; they flatly denied offering treatment to those with HIV. Confused yet? I was and still am. Similarly, the renowned Chelsea and Westminster Hospital, which specialised in HIV and fertility, offer IVF, but they do not have the facilities for sperm retrieval (ICSI) so they refer patients onto IVF Hammersmith. But in turn, Hammersmith do not have storage facilities for patients with HIV so they cannot freeze sperm, eggs or embryos. The solution? The latter hospital told me to look overseas. So I did. I emailed a Cretan Fertility clinic and was duly informed that due to local laws that prohibit fertility treatment to those with HIV, no clinic in Greece would accept our case…But Russia might. Oh jolly good
Perhaps the comment that shook me to the core was delivered by the Centre for Reproductive Medicine Coventry. The lady on the opposite end of the line confirmed that ‘yes, we do treat people with HIV.’ Brilliant, I thought, but then she clarified, ‘but it’s up to the discretion of the doctor.’ Curious old me gently prodded for an explanation and she duly clarified, ‘you know, welfare of the child issues.’ Intrigued, I prodded further, ‘you mean like whether the baby can contract HIV during delivery?’ ‘Yes, but not just that,’ she replied, ‘it’s also about the welfare of your other children, if they’re ill or they’ve been taken into care.’ ‘Oh that’s right,’ I thought. ‘Because I have HIV, I must be living on the margins of society and perhaps I have an intravenous drug problem.’
I may not be thick skinned, and words do hurt me, but I am nevertheless determined. So I meandered on. Aberdeen Fertility Centre, offer treatments, such as IVF and ICSI, but they do not have storage facilities for patients with HIV. In the Sister’s words, ‘obviously, we can’t store your embryos with those of others because of the risk of contamination.’ So in a nutshell, they are unable to freeze your eggs, sperm and any viable embryos, which might be desperately required for future use. As precious as they are to someone requiring fertility treatment, any healthy, but surplus eggs, sperm and embryos will indeed be discarded and destroyed. The implications for someone with HIV requiring medical intervention to conceive is thus grave; emotionally, biologically and financially.
I could go on, but the bottom line is this; HIV complicates the whole process of receiving fertility treatment in the UK. It should not, but it does.
After spending months researching and contacting over 30 hospitals, a woman’s hospital was selected in the North West, which had been praised in recent news reports for delivering the baby of a celebrity couple. During our first consultation, the consultant made it crystal clear within the first few minutes of entering his office that those with HIV only receive treatment on a designated day each month. When I asked him to extrapolate, his reply was somewhat distasteful…’those with HIV and other viruses, like hepatitis, are treated together on the same day when there’s no risk of infecting other patients through lab equipment.’ ‘That’s right I get it,’ I thought, ‘for one day each month, the treatment rooms, the theatres and the lab are out of bounds for the ‘healthy’…only those with ‘viral infections’ tattooed to their brow are permitted entrance.’ When I sought to remind the consultant that both our viral loads had been undetectable for over six months so we were not a high-risk category, he continued to whistle the same tune. Smiling he added, unless they meet guidelines they would lose their HFEA licence.
Bizarre, how it is seemingly medically ethical to risk cross-contamination between fertility patients who are living with HIV or hepatitis. Just what kind of message is that sending out? I was too stunned to ask the consultant about the severe repercussions for those women living with HIV whose ovulation does not coincide with the day the clinic designates for treatment each month. Do I also think an assigned nurse ‘double gloving’ to take blood was medically ethical? Of course not, it was an action as medically myopic as the general attitude towards people living with HIV.
In the end, we both stepped away from the unwelcoming fertility clinic, with one of us still passionately longing for a child, and the other one not. The emotional ensemble led to divorce. As for me, I now have a beautiful son, free of the virus.
Should there be a conclusion, it is be equipped emotionally for the travails of being on the fertility merry-go-round. With HIV thrown into the mix, you might require broad shoulders and an additional dose of determination. But take heart from knowing that some of the clinics I was in contact with along the way, such as Chelsea and Westminster, were incredibly helpful
The hospital information is correct at the time the original article was published, summer 2010.
This article previously appeared on the blog of girlwithhiv here.