A landmark case in Victoria ruled that HIV alone was no reason to exclude a positive woman from fertility services: a victory unimaginable just four years ago. With more HIV positive women now considering pregnancy a real option, Kirsty Machon looks at the latest thinking on the baby question.
The recent media flurry around the case of an HIV positive woman seeking Invitro Fertilisation services (IVF) underscores how emotive the issue of pregnancy can be, especially in the context of HIV. A Channel Nine website poll – blunt and unscientific as these instruments are – gives some indication of the depth of the general social anxiety. Asked simply ‘Should HIV positive women be allowed to access IVF’, 1,549 respondents said ‘YES’, compared to a whopping 11,638 ‘NO’ voters, an unusually one-side result.
One might expect this. Many people are likely to be unaware of the extent to which treatments have improved outcomes for HIV and the way they have dramatically reduced the risk of transmission during pregnancy. The wider public may be making the assumption that all babies born to HIV positive women are at risk of infection and death. The facts of the matter are quite different – and certainly less sensational.
In Australia, between 1998 and 2000, 56 children were born to mothers who were identified with HIV. Overwhelmingly (in 50 cases) the mothers knew they were positive at the time of their pregnancy, and in this group, none of the babies acquired HIV. The other six babies were born to women that were unaware of their HIV diagnosed until tests during or after birth, and three of these six babies were delivered HIV positive.
Without any kind of intervention, about 30 percent of children born to positive women will have HIV. Intervention means not only antiviral treatments, but also a range of other risk-reduction techniques, like delivery by Caesarean section, and bottle-feeding. The use of treatments to lower viral loadA measurement of the quantity of HIV RNA in the blood. Viral load blood test results are expressed as the number of copies (of HIV) per milliliter of blood plasma., plus other interventions, has reduced rates of mother-to-child transmission to as low as two percent.
That the news is good is evidenced by last April’s conference of the National Association of People Living with HIV/AIDS (NAPWHA) where a speaker was moved to comment that there was no greater sign of how things had improved than the presence of three very visibly pregnant positive women. Two of these women have since given birth to healthy babies (the third is not yet born), joining a long line of new positive mothers in what has been styled a virtual baby boom.
For women unaware of their positive status during pregnancy, the risk of a baby being born positive is higher. This has led to rumblings from practitioners about the need for widespread – even mandatory – antenatal HIV testing and some alarming anecdotal stories of women at major metropolitan hospitals being tested during pregnancy with neither consent or counselling, in flagrant contravention of testing guidelines.
Advocates have responded by pointing out that widespread antenatal testing would amount to a waste of health dollars. There’s little point in testing women who are not at risk of HIV. However, women in Australia, in general, have lower rates of HIV testing, and a statistically greater likelihood of being diagnosed only when they are ill. It may be good health practice, therefore, to encourage women to consider testing based on consideration of any risk factors, regardless of pregnancy.
For positive women who plan to have a child, a number of potentially stressful emotional and clinicalPertaining to or founded on observation and treatment of participants, as distinguished from theoretical or basic science. questions arise. Things like: How should I fall pregnant? What HIV antiviral drugs (if any) should I take during my pregnancy? Should I allow my baby to be treated with antiviralsA medication or substance which is active against one or more viruses. May include anti-HIV drugs, but these are more accurately termed antiretrovirals. after birth? How will I explain to people why I am not breast feeding?
Planning for pregnancy
One of the major risks for transmission of HIV is a high viral load or low CD4 count. With a high viral load, transmission may occur more readily. If you’ve a low CD4 count, pregnancy may be an additional burden on the immune system, and may increase your risk of illness. If you’re considering pregnancy, you should have your viral load and CD4 count tested, and discuss these results with your GP and specialists.
How should I fall pregnant?
Women whose partners are HIV negative may wish to self-inseminate with their partner’s semen, a relatively straightforward process that can be done at home. To maximise chances of conception, you should time the insemination to the time in your menstrual cycle when you are most fertile (a sort of reverse Rhythm Method): a doctor will be able to advise on how this is calculated.
However, HIV and some treatments may interfere with hormonal cycles, reducing fertility. This was the case for the Victorian woman seeking access to IVF. The upshot of that case was that HIV positive women seeking access to fertility services should not be necessarily excluded. Rather, all applications from HIV positive women will be considered on a case-by-case basis, and a range of factors will be taken into consideration. This means IVF may be an option for some positive women with fertility problems (related or unrelated to HIV or treatments). However, IVF is an expensive, invasive and time-intensive procedure, and you need to rule out the possibility of simpler alternatives like self-insemination first.
Some women with HIV opt to become pregnant in the most time-honoured way: sex. ‘Natural’ conception is very emotionally satisfying and important to some women and couples, although it does raise an obvious set of complications about the very real risk of transmission to a HIV negative partner. There are a range of risk-reduction measures used by people with HIV who have unprotected sex, but the risk is not negligible. These issues can be discussed in detail with a doctor you trust.
One of the most loaded questions for positive women is the issue of antiviral treatment during pregnancy, or in the period immediately following birth (postpartum). There is not exactly a wealth of information about the effects of HIV antiviral treatment on the foetus or on newborn babies, and some obvious reasons to be cautious about which drugs to use. However, the experience of the overwhelming majority of Australian women (and women around the world) is that HIV antivirals can be safely used in pregnancy and in newborn babies, and that they do dramatically reduce transmission of HIV.
Postpartum treatment does not mean your baby is HIV positive and needs treatments. The idea is that reduced doses of some HIV antiviral drugs (most commonly AZT and nevirapine), given to the mother and the child after birth may prevent HIV infection from ‘taking hold’ by reducing virusA small infective organism which is incapable of reproducing outside a host cell. to levels at which it cannot be transmitted, or cannot begin to infect cells and replicate. AZT is the drug about which most is known, largely because it is!tie!mosu-studied. But other drugs are sometimes used.
Some women do have grave fears about possible effects of antivirals on their newborns, to the extent that they do not wish to have the baby treated. You need to be aware, however, that you can be legally obliged to treat your child with HIV antiviral drugs during birth and in the few weeks after, even if you elect not to take treatments yourself during pregnancy.
Doctors, nurses and specialists involved in caring for you or your child during pregnancy or birth have legal responsibilities to report to authorities if they feel a child is at risk of harm. “Risk of harm” may include any risk which may arise from something which is not done to protect a child from harm, including the refusal of a parent to consent to standard-of-care medical treatments in life-saving situations. Recently, in one case, a HIV positive woman was threatened with the removal of her child because she did not agree to the baby being treated after birth. The situation was needless to say devastating for the woman concerned, who had been led to believe her wishes would be respected. Eventually, a community nurse treated the child at home. However, this was a stark reminder of the lack of appropriate counselling, support and information available for women with HIV in this situation, and underscores the need for all positive women planning pregnancy to seek out a supportive team of practitioners who are able to help balance the rights of the mother with the rights of her newborn.
On the other hand, no woman can be legally forced to take treatments herself during pregnancy, although research shows that about 88 percent of positive women will choose to do so.
There are standard-of-care guidelines your doctor will be familiar with, that outline the basic principles of treatment in pregnancy. In general, if you’re already doing well on a particular treatment combination, you won’t be advised to change your combination or stop treatment during pregnancy, unless you’re using a drug or combination (eg. efavirenz, or ddI and d4T together) considered risky to your baby.
If you don’t already take antivirals, however, and there is no immediate reason for you to start, you may be advised not to take treatments until the second trimester (about 12 weeks) into your pregnancy.
For women who do not want to take treatments during pregnancy, a range of short-term treatment options may be available during the final weeks of pregnancy, or during birth, which you may be prepared to accept, and which is designed to minimise transmission to your child during this period. You may also be asked to consider delivery by Caesarean section, though this isn’t always necessary or advised.
Finding good care
In the end, it’s impossible to apply a set of abstract clinical ‘rules’ to any individual case. All aspects of your pregnancy will need to be planned and discussed with your partner, and with your doctor. You should ask your doctor for referral to specialists who have experience in, or are sympathetic to, HIV positive women. The growing number of women who have had successful pregnancies may be your greatest resource of all. Your AIDS council or local PLWHA group may be able to put you in touch with other women who are planning pregnancy, or who’ve been there.