Nine out of ten women and girls receiving care for HIV in the UK are of reproductive age.¹ Many women with HIV have a very strong desire to have children, and the availability of effective measures to prevent mother-to-child transmission has enabled thousands to do so safely. Indeed, questions about conception and pregnancy tend to figure highly on the list of HIV-positive women’s concerns.

But what about contraception? A woman with HIV – like any other woman – may wish to delay pregnancy for a more suitable time, to limit her number of children, or to avoid pregnancy altogether, and so will need advice and access to contraceptive methods.

Two small studies at this year’s BHIVA conference found that between a third and a half of heterosexuals with HIV were not planning to have a child in the future.^2,3

Getting appropriate information and advice on contraception is especially important because some types of hormonal contraceptives can be affected by antiretroviral drugs. In general, the contraceptives become less effective, while the antiretrovirals themselves are not affected.

Dr Sharon Moses works in sexual and reproductive health in Leicester. “We had a couple of women who came to the clinic, didn’t disclose that they were HIV positive, asked for their preferred contraceptive method, and then came back pregnant,” she says.

Now Sharon works more closely with the HIV clinic in Leicester and raises awareness among her immediate colleagues of the specific needs of women with HIV.

Of course, an HIV-positive woman’s choice of contraception may be affected by her desire to avoid HIV transmission as well as pregnancy.

As Ursula Harrisson, Clinical Lead for HIV Women's Services at the Chelsea and Westminster Hospital, comments, “A lot of women are quite happy using condoms. They see them as being a perfectly reasonable non-hormonal contraceptive that will give protection against HIV transmission and sexually transmitted infections, as well as pregnancy.”

However, some contraceptive specialists feel that condoms are a relatively ineffective method. When couples use them consistently and according to instructions, around 2% of women are still likely to become pregnant in a year. Many people find that they are less effective than that, because they don’t follow all the instructions on the pack or are not able to use them each and every time.

Many other contraceptive methods are more reliable. For example, contraceptive injections have a failure rate of 0.3%, and when the combined pill is taken with perfect adherence, the failure rate is 0.1%.

At the same time, it seems that not all women with HIV are getting information about the full range of contraceptive methods, perhaps because it is thought that condoms and female condoms are the only appropriate methods to use.

“Service users say they often feel that they are not allowed to use hormonal contraceptives because of being HIV positive, nor are they advised of any other contraceptives except condoms” say Beatrice Osoro and Stella Gwimbi from Positively Women.

Gráinne Cooney is a nurse practitioner in sexual and reproductive health at the Chelsea and Westminster Hospital in London. She says that women are always advised to use condoms, but “in reality, women may not always use them, either through choice or due to pressures in a relationship”.

Given that a condom may break – or that a partner may refuse to use one – many women choose a strategy of ‘double protection’ and use condoms in addition to another, more reliable, form of contraception.

Gráinne tells us that women often say “I just want to be absolutely sure – if we have an accident, I want to have something else on board that will protect me against unplanned pregnancy”.

For women not on antiretroviral treatment, almost all contraceptive methods can be considered. This means that as well as the condom, female condom, combined pill, progestogen-only pill, skin patch and vaginal ring, there are four types of long-acting reversible contraceptive available: injection, implant, intrauterine device and intrauterine system.

Contraceptive specialists often encourage the use of long-acting methods because they don’t require the user to remember to use them each time she has sex or to take them each day, and so failure rates are lower. Women may also prefer them because they are more discreet.

The only contraceptives not recommended for HIV-positive women not taking treatment are diaphragms and caps. These barrier methods are normally used with a nonoxynol-9 spermicide, and repeated use of this has been shown to irritate mucosal surfaces, causing genital sores and lesions. A lesion in an HIV-positive woman may make transmission to an HIV-negative partner more likely.⁴  However, some doctors think this advice is overly cautious.

If you are taking HIV treatment, the options change. Some hormonal contraceptives can be affected by antiretroviral drugs (ARVs), making the contraceptive less effective, potentially leading to an unwanted pregnancy.

There are possible drug interactions with both non-nucleoside reverse transcriptase inhibitors (NNRTIs) and protease inhibitors (PIs). Nucleoside and nucleotide transcriptase inhibitors (NRTIs) are not affected, but this is small comfort as almost everyone taking antiretroviral therapy will be taking either an NNRTI or a PI in addition to their nucleoside backbone.

However the evidence so far suggests that the new NNRTI etravirine (Intelence) can be used safely with contraceptives, as can drugs from the newer classes of integrase inhibitors, fusion inhibitors and entry inhibitors.

It’s also worth remembering that other medication may interact with hormonal contraceptives too – this is the case for the TB drug rifampicin, for example.

All types of hormonal contraceptives are affected by the use of these antiretrovirals, except Depo Provera and other contraceptive injections, and the Mirena intrauterine system. There are no problems with non-hormonal methods including condoms, female condoms and the intrauterine device (‘coil’).

Dr Eki Sangha, contraceptive expert at the Birmingham Heartlands HIV Service explains: “Both antiretrovirals and hormonal contraceptives may be processed in the liver by the same enzymes, with the contraceptive being processed faster than usual. The end result is that levels of the contraceptive hormones may not be high enough”.

Eki continues: “There are a limited number of pharmacokinetic studies which have described the relationship between specific antiretrovirals and the contraceptive hormones oestrogen and progestogen. What we don’t have are any studies of the efficacy of contraception in women taking antiretrovirals, in other words solid evidence of the impact of these drug interactions on rates of contraceptive failure”.

Service users say they often feel that they are not allowed to use hormonal contraceptives because of being HIV positive, nor are they advised of any other contraceptives except condoms. Beatrice Osoro and Stella Gwimbi, Positively Women

The UK guidelines recommend that contraceptives not affected by ARVs should be considered. However, if a woman still wishes to use such a contraceptive, ‘double-protection’ with the additional use of male or female condoms is recommended. Using a partially effective method may be better than using no contraceptive at all.

 In the case of the combined-contraceptive pill (by far the most popular form of hormonal contraception in the general population), the guidelines also suggest that it may be possible to prescribe an increased dose of the contraceptive pill – perhaps taking an older product that contains a higher level of hormones, or taking a double dose.

However, not all professionals are comfortable with this. “It’s an unlicensed, non-evidence based practice,” Sharon Moses says.

The worry is that whereas the pill is safe for the vast majority of users, its use is associated with a very small increase in the risk of a blood clot, heart attack or stroke. A large dose is likely to increase this risk.

Several alternatives are available. In particular, there are two types of hormonal methods that do not interact with antiretrovirals. And both are long-acting and reversible.

Contraceptive injections deliver the hormone progestogen. The most commonly used in the UK, Depo Provera, should be taken every twelve weeks. It is extremely reliable.

However, there are a couple of points to consider. One is that after stopping the injections, it can sometimes take up to a year for a woman’s fertility to return. For a woman who doesn’t want to get pregnant right now, but may wish to do so after a few months, this may make the method unsuitable, particularly for older women who still want the possibility of having a child.

Another concern is that Depo Provera affects levels of oestrogen, causing ‘thinning’ of the bones. Whilst this is not normally a problem for most women (bone density returns after the injections are stopped), it may be more of a problem for women who already have risk factors for osteoporosis. Since less severe bone mineral loss (osteopenia) is more common in people with HIV than in HIV-negative people and using  protease inhibitors is associated with higher rates of osteoporosis, this may need to be taken into account.

Gráinne Cooney says that the approach at the Chelsea and Westminster is much the same as for any other woman. “The clinician will make an assessment of the woman’s risk of osteoporosis, which will include HIV status and use of antiretroviral therapy. All women are given health promotion advice on how to maintain healthy bones and are monitored regularly,” she says. “UK guidelines do not exclude women living with HIV from using Depo Provera.”

An intrauterine device (IUD, also known as a ‘coil’) is a small, flexible device that is often in the shape of a ‘T’ and is fitted in the womb by a doctor or nurse. The Mirena intrauterine system (IUS) is the hormonal version. Both can be left in place for several years.

Both the IUD and IUS remain effective when women use antiretrovirals, and both are very reliable.

They can affect a woman’s periods. IUD users often find that they are heavier, longer or more painful, whereas the opposite is the case with the hormonal IUS. Some women using the IUS find that their periods are irregular or stop altogether. Personal preferences differ – some women are pleased to have a method that reduces heavy, painful periods, whereas other women are disturbed by the absence of bleeding.

A check-up for bacterial sexually transmitted infections is needed before fitting an IUD or IUS. Any infection should be treated before the coil is inserted; otherwise there could be a risk of pelvic inflammatory disease.

Given the specific issues for women on HIV treatment, where can women go to get the right advice? In the general population, most women seek contraception from their general practitioner (GP) or from a community contraceptive clinic.

Many women with HIV continue to do so, but if they don’t feel comfortable disclosing their use of anti-HIV drugs or are not aware that it is important to do so, they won’t get the right advice. Also, some, but not all, mainstream services may lack confidence in dealing with drug interactions.

Disclosure and specialist knowledge are less likely to be problems if a service is provided by the HIV clinic, or by a service attached to it. Some HIV clinics are making particular efforts to address women’s sexual and reproductive health needs, by providing specialist clinics for women with HIV where contraception can be provided along with sexually transmitted infection screening, annual cervical smears, investigation of gynaecological problems and advice on conception.^14,15 Studies presented at this year’s BHIVA conference suggested that such integrated, holistic services would be popular.^16,17

There is a specialist clinic available to women at the Chelsea and Westminster, but Ursula Harrisson doesn’t feel that this is enough. “The problem with having a dedicated clinic once a week is that women don’t necessarily have the time to come in that day,” she says. “They may have their HIV appointment on another day or they may be busy with work or childcare.”

The hospital is developing a system so that specialist nurses and doctors are always available to address women’s health issues whenever the HIV outpatient clinic is operating.

However the services provided vary across the country, and many HIV clinics won’t have the resources to provide specialist services. Many women will continue to go to mainstream services for contraception.

But that doesn’t mean that the HIV clinic has no role to play. HIV clinicians and pharmacists will still be available to answer women’s questions about interactions between their antiretroviral drug regime and their preferred method of contraception.