"How are we going to have a baby? I’m positive and you’re not"

Joanna Moss of the African Health Policy Network (AHPN) looks at conception and fertility guidelines and services for people living with HIV in the UK.

With effective HIV treatment and a managed delivery, the risk of mother-to-child transmission of HIV is very low. In the UK, the risk of mother-to-child transmission for women who have been diagnosed and who receive the right advice and treatment, is below 1%, with transmission rates for babies of women on combination therapy and a viral load of less than 50 copies/ml at 0.1%.¹ So for many people with HIV, having a healthy, HIV-negative child is an achievable goal.

Currently, advice on how a heterosexual couple of differing HIV status (often called ‘serodiscordant’) should go about conceiving if they wish to have a child is changing rapidly. In the last two years, significant research findings have changed opinions on conception methods considered safe for people living with HIV and their HIV-negative partners. In particular, there has been considerable debate about the risk of HIV transmission through unprotected sex. This is because of new evidence for the efficacy of HIV treatment as prevention (when a person living with HIV takes effective HIV treatment and their viral load is supressed to an undetectable level, this reduces infectiousness), and of pre-exposure prophylaxis (PrEP; the use of anti-HIV drugs prior to exposure to HIV to prevent infection). These prevention methods – individually or in combination – should significantly increase options for conception methods for some serodiscordant couples.

The UK’s National Institute for Health and Clinical Excellence (NICE) covers conception services for people living with HIV in its national fertility guidelines.^2,3

This article looks at the guidelines for conception and fertility services for people living with HIV in the UK, examines experiences of using conception services, and considers whether recommendations are struggling to keep up with new research.

HIV and pregnancy in the UK

Each year from 2005 to 2010, between 1100 and 1300 children were born in the UK to women with HIV.⁴ This means that, since 2005, thousands of women with HIV have successfully conceived and nearly all had babies born without HIV, thanks to effective HIV treatment and care. Many of these women have sought advice or assistance on the safest way to conceive.

In 2009, HIV prevalence was estimated at 0.28% amongst women giving birthin the UK. The majority of pregnancies in women with HIV are in sub-Saharan Africans (with 2.19% HIV prevalence amongst sub-Saharan African mothers giving birth in London, and 3.41% prevalence elsewhere in England in 2009).⁵ African people comprise the second-largest group affected by HIV in the UK, accounting for more than half of heterosexual transmission. There is also significantly greater HIV prevalence amongst women born in Central America and the Caribbean (0.78% in 2009).⁶

The Plus One study,⁷ published in 2011, investigated the experiences of African people in different-status relationships living in the UK. Their experiences of conception and fertility services inform this article, as well as giving this article its title.

Fertility and HIV infection

Before discussing conception guidelines, it is useful to be aware of ongoing discussions about reduction in fertility as a result of HIV infection or treatment.

Multiple studies have documented reductions in fertility among women with HIV in comparison to HIV-negative women, because of reduced ovarian reserves (the capacity of the ovary to produce eggs capable of fertilisation) or damaged fallopian tubes,^8,9 which make it harder to conceive. Preliminary results from a study at the University of Milan suggest that antiretroviral therapy might be associated with higher sperm DNA fragmentation in men with HIV.¹⁰ Higher sperm DNA fragmentation increases the chance of miscarriage, reduced-term pregnancy and foetal abnormalities.

Theories vary on the extent to which fertility is affected. However, it is sensible to consider this possibility when seeking conception advice, particularly if your age also means your fertility is likely to be reduced (fertility starts to decline from the age of 30 in women, and drops sharply at 35¹¹).

Current conception guidelines

Guidelines currently in use in the UK tend to consider three scenarios to determine the safest method of conception:¹²

1. Couples where both have HIV.
2. A serodiscordant couple where the woman is HIV positive and the man HIV negative.
3. A serodiscordant couple where the man is HIV positive and the woman HIV negative.

Since the mid 1990s, treatments for all three scenarios have been relatively well established in the UK and these were formalised in NICE’s 2004 fertility guidelines. (An update to these guidelines is currently in progress and is due to be published later in 2012.)

For couples where the woman is HIV positive and the man is HIV negative, self-insemination, using the man’s semen and a needleless syringe, is recommended as the best way to conceive, with no risk of HIV transmission.

For a couple where the man is HIV positive and the woman HIV negative, the development of sperm washing technology enabled safer conception. Sperm washing separates the sperm (which is required for conception) from the seminal fluids (which are not required and may contain HIV). The couple are then helped to conceive using the ‘washed’ sperm by the most appropriate artificial insemination technique for that couple, which depends on their fertility. These techniques include intra-uterine insemination (IUI), where the washed sperm is placed directly into the uterus (womb) of the female partner (done around the time she is ovulating and most likely to become pregnant) and in vitro fertilisation (IVF, where the eggs are inseminated with washed sperm in a laboratory). Sperm washing is not risk free, though studies have shown that the risk is minimal.

For couples where both the man and the woman have HIV, unprotected sex may carry a risk of drug-resistant HIV being passed on. The current guidelines therefore suggest that safer conception should involve testing each partner’s HIV for drug-resistant mutations. If neither partner has drug resistance, or they have the same type of resistance, they could conceive naturally by unprotected sexual intercourse. If one partner has resistant virus, or both do, with different resistant viruses, the recommendations are the same as for a couple who had different HIV status and, to avoid possible superinfection, conception using sperm washing is recommended.

Real-world experiences

Quotes from the Plus One study illustrate some of the criticisms of methods of assisted conception for people living with HIV. These include the idea that assisted conception is not ‘natural’, with a number of people wishing to conceive through unprotected intercourse instead:

“I would be very happy to have it, um, natural, natural sex with her and make sure get impregnated. I don’t want to go for the sperm wash.” Male, positive

Occasionally related to this was an expression of shame or regret at having had discussions about, or having had, unprotected serodiscordant intercourse. This shows that risk of transmission is not always enough to prevent unprotected intercourse if a couple wants to conceive. For example:

“We did it once without a condom and then I told him ‘no we can’t carry on doing it without’.” Female, positive

Others commented on practical reasons why they felt that available assisted conception techniques are not acceptable. A number talked about the prohibitive cost of sperm washing:

“It’s too expensive to wash them, it’s too expensive.” Female, negative

And others about the embarrassment or sadness of having to plan a pregnancy with clinicians:

“I must discuss it with my doctors. [...] It makes me feel bad sometimes. [...] But now I have to discuss with this and discuss with this, everyone has to be aware that if I want to get pregnant. No it’s not funny.” Female, positive

The study was designed to give insight into individual experience rather than providing a sample size large enough to make generalisations. There were also a handful of positive experiences from participants who had successfully conceived using the assisted reproduction technologies discussed in the previous section.

Treatment as prevention

Options for preventing HIV transmission have changed radically in the last two years. In 2011 and 2012, research demonstrating the efficacy of HIV treatment as prevention¹³ and the potential effectiveness of pre-exposure prophylaxis (PrEP) was published. Both findings are beginning to have, and will continue to have, a significant impact on the recommended routes for safer conception for people living with HIV.

Reading the quotations from Plus One, from couples desperate to conceive, it is easy to understand why there has been so much excitement about new recommendations for less invasive, less expensive, but still safer conception, and why it is important that they are implemented quickly.

“I have been told that I might have sex with her without a condom if I want babies, some sort of the risk of her being infected is very low. [...] people they talk like that but it is, I have heard about that [...] But is it true anyway that statement?” Male, positive

Uncertainty about whether or not it is safe to conceive by unprotected intercourse (as expressed in the quote above) is not surprising, given how recent the news on the effectiveness of treatment as prevention is.

To summarise, a pivotal study (referred to as HPTN 052) involving over 1700 couples, showed that there was a 96% reduction in transmission between heterosexual discordant couples if the partner with HIV was taking antiretroviral therapy (ART).¹⁴ This confirms that the risk of sexual HIV transmission is very low when someone with HIV is taking effective HIV treatment and meets certain criteria. This concept is often referred to as ‘treatment as prevention’ or TasP.

HPTN 052 confirmed what a lot of doctors had suspected for some time: if a person with HIV is taking treatment, the likelihood of their transmitting HIV is reduced to such an extent that in many cases a serodiscordant couple and their doctor may regard this as sufficient protection from HIV. In the light of these findings, a significant revision of fertility guidelines was warranted.

NICE’s draft revised fertility guidelines are due to be published in a final version in autumn 2012. They are likely to include a new recommendation for heterosexual couples wanting to conceive. NICE says that, in certain circumstances, using treatment to prevent transmission during unprotected sex is as safe as sperm washing, to enable conception between an HIV-positive man and an HIV-negative woman. Providing the following conditions are met, serodiscordant unprotected sex is considered a safe method of conception:

• Unprotected intercourse is limited to the time of ovulation.
• The man is on highly active antiretroviral therapy (HAART) and is adhering to his treatment regimen.
• The man has a plasma viral load of less than 50 copies/ml (an ‘undetectable’ viral load).
• Neither partner has any other sexually transmitted infections.¹⁵

If any conditions are not met, or if a couple believes the risk of unprotected intercourse is unacceptable, NICE still recommends considering sperm washing. You will need to discuss whether or not this might be a suitable option for you with your partner and your doctor.

It is thought that some clinicians, who have independently reviewed the evidence, have been recommending this approach for some time. 

NICE does not mention this situation specifically, but it might be assumed that in couples where both partners are living with HIV, but have infection with different strains, they might also follow this guidance for safer conception, providing all the conditions are met.

At the moment, NICE is not planning to change its advice for women with HIV whose partner is HIV negative.

In contrast, the Greater Manchester Sexual Health Network also reviewed its advice in 2012 and came to the opposite conclusion. Its advice for couples wishing to conceive by unprotected intercourse is:

“UPSI [unprotected sexual intercourse] is not recommended either in this protocol or in national BHIVA guidelines; [the] only recommended option is sperm washing due to risk of transmission.”

At the moment, different clinicians and guidelines are saying different things about the safety and risk of unprotected intercourse, in combination with treatment as prevention, for conception. Once NICE publishes its guidelines, it is likely that local guidelines, such as those from Manchester, will be revised again. Until then, the contradictory advice available from different sources is likely to be confusing. To make sure you get the best advice, it’s best to start discussions with your doctor early. They, and other staff at your HIV clinic, will be able to talk through your particular situation and what options may be open to you. They can also talk to you about preparations you can make for pregnancy, such making sure you are in the best possible health.

Pre-exposure prophylaxis (PrEP)

PrEP is the term used to describe the use of antiretroviral treatment by HIV-negative people to prevent HIV infection. An HIV-negative person might take PrEP for a short time while they are at high risk of infection. It is not the same as post-exposure prophylaxis (PEP), which aims to prevent HIV infection taking hold after someone has been exposed to it.

Clinical trials on daily oral PrEP have been running since 2005. There have been mixed results as to PrEP’s efficacy, but the study most relevant to serodiscordant couples, the Partners PrEP study,¹⁶ found that if the HIV-negative partner took tenofovir/FTC (Truvada), their likelihood of HIV infection was reduced by 75%. Lower efficacy rates in some other trials, however, led the World Health Organization (WHO) to state¹⁷ that, although trials of daily oral PrEP have shown evidence of effectiveness, “it remains unclear how PrEP may best be implemented and scaled up in settings where its use might be most beneficial”.

Their recommendation is that, in cases where additional prevention choices are needed and early treatment for the HIV-positive partner is for one reason or another not taken, PrEP “may be considered as a possible additional intervention for the uninfected partner”.¹⁸

The Centers for Disease Control and Prevention (CDC) in the United States (US) has released interim guidance to license the use of PrEP for heterosexual, serodiscordant couples. The guidance sets out the need for healthcare providers to discuss available information about potential risks and benefits of beginning or continuing PrEP with women considering pregnancy, so that they can make an informed decision.¹⁹

Although there has been lots of discussion about whether PrEP could help couples in the UK who want to conceive, NICE’s draft guidelines suggest clinicians inform couples that “there is insufficient evidence to recommend that HIV-negative women use pre-exposure prophylaxis”. The Greater Manchester Sexual Health Network guidelines state that the network is not making a recommendation at the moment, “though individual clinicians and patients may wish to discuss this issue further as evidence becomes available”.

There is anecdotal evidence that some serodiscordant couples are seeking PrEP for extra reassurance, in addition to HIV treatment and/or other measures, while they try to conceive. It is likely to be a confusing issue in the UK until a clear guideline makes a recommendation. In the meantime, there is incorrect and potentially dangerous advice about this on the internet. Always talk to your HIV doctor before making decisions about the best course of action.

In the next few months, there will be crucial developments in conception recommendations. If NICE’s guidelines are published in their current form, other fertility guidelines are likely to align themselves and recommend the same conception options, including unprotected sexual intercourse in certain circumstances. Ideally, this agreement should be reached quickly so that clinicians can give up-to-date and consistent advice.

It is possible that you might be told different things by different doctors at different times, particularly because opinions about the safest way to conceive are likely to keep changing as new research is published. The wider range of options also means clinicians have the responsibility of explaining the benefits and risks of each possible method of conception to each couple.

While more conception options mean more choice, there are also new risks. Unprotected sexual intercourse is not always the safest way to conceive and the draft NICE guidelines do not recommend it for everyone. If you want to conceive, you must still discuss the best option for you with your HIV doctor and – if it becomes relevant – with staff at a fertility clinic.

Sometimes, your options will be determined by other factors as well, such as your general health and your fertility, or that of your partner. Starting discussions early with your healthcare team about having a baby will give you the best possible chance of having a healthy, HIV-negative baby.

Availability and regulation of sperm washing

During research for this article, it became apparent that, for people who still want sperm washing as additional assurance against HIV transmission, information about the availability and regulation of sperm washing in the UK is not always clear. This is useful to be aware of when finding or recommending a clinic.

The Human Fertilisation and Embryology Authority (HFEA) is the independent regulator of fertility services. The HFEA licenses semen preparation and sperm washing is monitored in that category.²⁰

The HFEA also provides a database of licensed treatment centres, which they encourage new patients to use to find fertility services. The database shows that although 42 clinics in the UK say that they provide sperm washing, actually, sperm washing for people with HIV is only available at a small number of clinics, notably at Chelsea and Westminster Hospital and King’s College Hospital in London, and the Hewitt Centre for Reproductive Medicine at Liverpool Women’s Hospital. Prospective calls to some of the other clinics listed confirmed that there is no referral procedure for people with HIV to these services.

If you want to access sperm washing, ask your HIV doctor where you would be able to get this treatment.