First UK use of PrEP for couples hoping to have a child

Pre-exposure prophylaxis is starting to be used in the UK, to help HIV-positive men and their HIV-negative female partners have children together, Yvonne Gilleece told the British HIV Association (BHIVA) conference in Bournemouth last week. Only a handful of couples have used the procedure so far, but there have been no HIV transmissions.

Also this month, other research has shown how couples wishing to conceive value the ‘normality’ that a pregnancy signifies, but find that a medical intervention like sperm washing undermines this normality. When antiretroviral treatment reduces a partner’s viral load to an undetectable level this can enable couples to feel more confident about conceiving through ‘real sex’.

Pre-exposure prophylaxis

Pre-exposure prophylaxis (PrEP) is the use of antiretroviral drugs by HIV-negative people to help prevent infection. Last year an international trial showed that daily PrEP substantially reduced infections in men who have sex with men.

European clinicians have previously described using PrEP as an additional tool, alongside HIV treatment that reduces the HIV-positive partner’s infectiousness, to allow heterosexual couples to have timed intercourse in order to achieve a pregnancy, with a low risk of HIV transmission.

At the BHIVA conference, Dr Gilleece outlined the pre-conception services provided by the Royal Sussex County Hospital in Brighton and Birmingham Heartlands Hospital. These clinics work with both local couples and those who have been referred from other hospitals.

Couples require extensive information, discussion and counselling before proceeding. It is important to explore other options such as sperm washing and adoption, as well as to fully explain the available data on HIV treatment and infectiousness. Moreover, couples need to have a ‘no blame’ attitude and to have considered the worst-case scenario.

Because this use of antiretroviral drugs is unlicensed and a risk of HIV transmission remains, couples must provide written consent before proceeding.

Gilleece noted some of the reasons couples choose to use pre-exposure prophylaxis - they may be unable to obtain NHS funding for sperm washing (particularly if they already have a child) and unable to pay for sperm washing privately. Sperm washing requires travel to London and disruptive procedures, whereas when using PrEP, conception may feel more natural.

However there are a number of situations where the use of PrEP would be inappropriate – when a partner is co-infected with hepatitis, when fertility interventions are required, when HIV viral load is detectable in blood or semen, or when a partner is very anxious about HIV transmission.

The HIV-negative partner is advised to take one or two doses of tenofovir or Truvada (tenofovir and FTC combined in one pill) between 24 and 36 hours before sex, and then another dose one to two hours afterwards. Couples are advised to limit unprotected sex to the days of the month during ovulation (and taught how to tell when the woman was ovulating).

Only five couples have gone through the programme so far. There have been four pregnancies, resulting in one live birth, one pregnancy that is still ongoing and two miscarriages. One couple stopped using PrEP when the male partner had a series of viral load blips (all men had an undetectable viral load on entering the programme). Couples had unprotected sex an average of three times before pregnancy was achieved (minimum one, maximum five).

These numbers are far too small to give any reliable data on safety, but there have been no HIV transmissions.

Gilleece said that these early data – the first from the UK – suggests that the approach is a safe and effective way of reducing risk. Demand for it is likely to increase, but current PrEP trials are not exploring this approach. She said that other UK clinics should only use PrEP in collaboration with more experienced centres, and that data from across the UK should be gathered collectively in order to assess the safety and efficacy of PrEP on a larger scale.

Assessing risk

A separate study of men and women in sero-different couples (where one person has HIV and the other does not) has shed light on how risks and interventions are weighed up when there is a desire to have a child.

Carmel Kelly conducted in-depth, qualitative interviews with six women and four men living in Northern Ireland. Some of the participants were HIV-positive and others were HIV-negative, but each had a partner of a different HIV status. The participants were born variously in Ireland, Africa and Eastern Europe.

For each interviewee, decisions about having children could no longer be taken for granted or made without discussion with clinicians. Biomedical understandings of risk and possibilities became central to their plans for the future. In fact some participants had previously assumed that it would now be impossible to have a child, and dialogue with HIV clinicians helped many understand and believe that having a baby in the context of HIV was relatively safe and normal.

However these feelings could sometimes be challenged by distressing encounters with fertility specialists and other non-HIV clinicians who questioned a person’s aspiration to have a child.

“He [doctor] said, ‘I have to think about the protection for my nurses and the doctors and you also have to think about the protection of your wife’. Now he made me feel that I was a threat to the entire medical staff and my family. And I had gone there for help. I didn’t go there to be told, as if I was a divisive enemy or weapon.”

Participants talked about how having HIV had affected their sex lives and about wanting things to be as ‘normal’ as possible. Several of the men put a particular value on unprotected sex, which was felt to be ‘real sex’.

“I am here trying to cope with treatment, not telling people my diagnosis and now I can’t even have my wife. For how long? A night? Two months? A year? Two years? No. Forever. From now onwards sex is out of the question. I mean real sex. Now that is another prison. Another sentence.”

The women were more likely to find condoms acceptable. They were more likely to enjoy sex when they knew they were protecting their partner from HIV.

For several interviewees, the decision to have a child with their partner was a key step in their relationship and was a sign of normality for each other and for the outside world. One HIV-negative woman explained how her pregnancy would provide a distraction to community members who had suspicions about her partner’s HIV status.

Another interviewee struggled to find the English to explain how fundamental the desire to have a child was to his sense of self.

“Since then I have had that idea of having a baby because I consider myself a human being. I was someone who (my English find it hard) to procreate. When we are healthy, when we are born and grow up we have that idea to procreate because we were procreated... But when I became HIV positive I think it is finished for me. I can’t have anymore. Having one woman, one wife and having healthy kids. These things affect me very much. When I think about it I think I am not useful anymore for people... I take the risk to do it because I want to feel as a man.”

But the same man and his wife were uncomfortable with the idea of sperm washing:

“I talk to the doctors. We discuss, they told me, they showed me the way I could have a baby without harming the baby is [sperm] washing... It is not how people want it. They want to have a baby a normal way, you know. Like my wife, when we discuss, she said, ‘no’, she can’t do this. It is better not having a baby. She born, when she born, she didn’t born that way. All babies she going to have in the future she want to have them the way she was born, normal way, you know.”

Sperm washing involves the man’s sperm being treated in a laboratory before it is artificially inseminated in his partner. The high cost of the procedure means that there can be wrangles with health bodies over payments and availability. Each attempt at a conception (of which there may be several) requires a trip to London.

Another man had considered sperm washing but expressed his preference for a pregnancy “the normal way, without any of the interventions”. It is notable that the reduction of viral load through antiretroviral treatment felt normal to him and was not perceived to be an extra intervention.

“You know they had suggested the various ways of how we could do it and we sat down and we discussed it and thought, ah well, seeing that I have been able to control the virus, and maintaining the viral load we will just do it the normal way, without any of the interventions.”

A number of participants had had unprotected sex on numerous occasions (sometimes including a period before HIV had been diagnosed), and this informed a faith or confidence they had in the possibility of having sexual relations without transmission occurring. This faith had been augmented by a growing awareness of the relevance of medication and viral load to transmission risks.

One HIV-negative woman explained how the transmission risk came to feel unexceptional to her.

“The second time [second pregnancy] it had become quite normal. You know it was not a big deal... You know, having unprotected sex with someone who is HIV-positive to become pregnant. To another person would be, like ‘what, you have done what, are you crazy?’ you know whereas to us now it’s like, you know, yeah, if you want to have another one.”

However her confidence in a low transmission risk applied only to times when she was trying for a baby; unprotected sex was not an option at other times.

Concluding her study, Carmel Kelly says that her findings demonstrate how personal priorities and meanings are central to the negotiation of risk in sexual relationships. Biomedical understandings of risk (including those based on viral load) are balanced against a broader set of expectations, meanings and desires.