What’s the problem?

In 2008, 430,000 children aged under 15 become infected with HIV.¹ Almost all of these infections occur in developing countries, and more than 90% are the result of mother-to-child transmission during pregnancy, labour and delivery, or breastfeeding. Without interventions, there is a 20-45% chance that a baby born to an HIV-infected mother will become infected. ²

Most infant HIV infections could be averted. The problem is that very few of the world's pregnant women are being reached by prevention of mother-to-child transmission (PMTCT) services. This page looks at why the situation is so dire, and what might be done to improve matters.

How can transmission be prevented?

The most effective way to prevent mother-to-child transmission of HIV involves a long course of antiretroviral drugs and avoidance of breastfeeding, which reduces the risk to below 2%. In developed countries the number of infant infections has plummeted since this option became available in the mid-1990s.

Since 1999, it has been known that much simpler, inexpensive courses of drugs can also cut mother-to-child transmission rates by at least a half. The most basic of these comprises just two doses of a drug called nevirapine – one given to the mother during labour and the other given to her baby soon after birth. These short-course treatments, combined with safer infant feeding, have the potential to save many tens of thousands of children from HIV infection each year.

Recognising this potential, the member states of the United Nations set targets for preventing mother-to-child transmission in 2001, as part of a landmark agreement called the UNGASS declaration. In this document the world’s leaders made the following pledge:

“By 2005, reduce the proportion of infants infected with HIV by 20 per cent, and by 50 per cent by 2010, by: ensuring that 80 per cent of pregnant women accessing antenatal care have information, counselling and other HIV prevention services available to them.” ³

The current situation

Since the UNGASS target, PMTCT services have been significantly scaled up. In 2005, only 15% of HIV-infected pregnant women received preventive drugs – barely making a dent in the number of infant infections. In 2006 the proportion was 23%,⁴ and by 2008 an estimated 45% of pregnant women living with HIV in low- and middle-income countries received antiretroviral drugs to prevent HIV transmission to their infants.⁵

Despite this increase, many countries still do not have enough PMTCT services and existing services are not reaching many of the local women in need.

Availability of PMTCT services

To achieve wide coverage, PMTCT programmes must be integrated into existing public health systems, with services provided by all antenatal and delivery clinics. So far, only a few developing countries have achieved this goal.

One reason given for the slow progress is that most health systems are poorly resourced: clinics are struggling to provide conventional services, let alone new ones. Yet although some improvements in infrastructure may be required, there is abundant evidence that PMTCT programmes are feasible even in the poorest parts of the world. ⁶ These interventions are cost effective and deserve to be seen as a necessary part of maternal and child health care. ^{7 8} Moreover, as researchers have noted:

“Should infrastructural improvements be necessary, the cost of these should be considered in the wider context of all the potential benefits to other health care areas. Thus the mobilizing of resources for MTCT prevention programmes should be seen as a catalyst for improving other areas of maternal and child health, and other areas of primary HIV prevention.” ⁹

Several countries in Latin American and the Caribbean – most notably Brazil – have already succeeded in providing PMTCT services to most pregnant women who attend clinics. ¹⁰ Thailand, too, has provided wide access since 1999. ¹¹

In Southern Africa, where HIV is very widespread among pregnant women, Botswana leads the way. High quality PMTCT services are provided in all of the country’s public facilities through the Maternal Child Health/Family Planning system, which serves over 95% of pregnant women. ¹² Test results from between November 2006 and February 2007 indicate that less than 4% of babies born to HIV positive mothers in Botswana were infected - a rate comparable with the USA and Western Europe.¹³

With sufficient effort, other countries could follow these examples.

Efficiency of PMTCT services

Preventing mother-to-child transmission might seem simple: just hand out lots of pills. In fact there’s much more to it than that. To begin with, the vast majority of women in the developing world have never been tested for HIV and don’t know whether they’re infected. This means that effective PMTCT programmes must provide counselling and testing services to determine which women need assistance.

And even if a clinic offers counselling and testing to every pregnant woman, the reality is that not all of them accept. Others, having been tested, fail to return to receive their results. This is just the beginning of a series of steps that leads to the ideal outcome, which is to reduce the risk of transmission as far as possible. At each step, some women drop out. By the end, it’s possible that only a minority will remain. The entire process is illustrated below.

This phenomenon can be seen in data from pilot PMTCT programmes supported by UNICEF between January 2000 and June 2002. Of more than half a million women who attended clinics in twelve countries, only 71% received counselling; of those who were counselled, only 70% took an HIV test; among women who tested HIV positive, only 49% received preventive drugs. Assuming that HIV prevalence among all women was similar to the rate among those who were tested, fewer than one in four HIV-infected women who attended a clinic went on to receive the drugs that they needed. ¹⁴

Many other studies in very poorly resourced areas have shown that such high drop-out rates are not unusual. ^{15 16 17 18 19} However, they have also found that some PMTCT programmes perform much better than others.

Improving efficiency means looking at nine main issues: accessibility; clinic resources; testing methods; fear and distrust; disclosure and discrimination; drug effectiveness; treatment for mothers; feasibility of replacement feeding; and male visits to antenatal clinics.

Accessibility

Poor women in the developing world have many responsibilities. Besides caring for their children they are expected to work hard preparing food, fetching water or tending crops. Many live a long way from their nearest health facility and have little access to transport. It is therefore hardly surprising that a third of the world’s pregnant women don’t attend antenatal clinics. ²⁰

Many other women visit clinics only once during pregnancy, and nearly two-thirds give birth unattended by a skilled health worker. ²¹ This already greatly reduces the number that can be reached by PMTCT programmes. The problem is compounded if women have to make follow-up visits to receive counselling, drugs or other services.

One study in Zambia found that a third of those given the drug never ingested it

To increase attendance, clinics should aim to be as accessible as possible. Improvements might include providing travel services or changing opening hours. For example, one programme in rural India boosted attendance by setting up a Saturday clinic. ²²

Women who are HIV positive should be encouraged to give birth at a clinic. Nevertheless, to attain high coverage, PMTCT programmes also need to reach those who deliver at home. One way to achieve this is to give a nevirapine pill to each HIV-positive woman in advance – perhaps even at the time of diagnosis – to be kept at home and taken at the start of labour. Yet although giving the drug in advance can increase the number of women who receive it, there is no guarantee that every pill will be swallowed. ²³ One study in Zambia found that a third of those given the drug never ingested it. ²⁴ Scientists in Uganda found better results, but only among a community used to taking part in scientific research. ²⁵

Moreover, to be fully effective, medication needs to reach newborn babies as well as their mothers. Infant doses are given in syrup form and are usually available only to women who give birth in clinics. ²⁶ Some programmes have however succeeded in dispensing the syrup in advance, inside sealed oral syringes, so it can be given after home births. ^{27 28}

PMTCT programmes can increase acceptance of self-administered drugs by working with traditional birth attendants, who attend the majority of home deliveries. With sufficient training, traditional midwives might also be able to provide other services such as HIV education, testing and counselling, and advice on infant feeding. ²⁹

Clinic resources

Shortages of HIV test kits, preventive drugs and other supplies can limit the efficiency of PMTCT programmes. It is therefore important to have reliable supply chains that are integrated into the systems serving maternal and child health clinics.

Staff shortages and motivational issues can also be very significant, especially when it comes to counselling, which takes a long time to do well. As a UNICEF report explains:

“PMTCT programs are being introduced into health care systems that in many cases are already seriously under-staffed due to lack of resources, outflows of trained providers to private institutions or to other countries that offer higher salaries, and, possibly, AIDS-related mortality. PMTCT interventions – although designed to be part of routine services – create significant additional work for staff already discouraged by long-standing problems such as low pay and inadequate medical supplies.” ³⁰

Ultimately, the best solution is to recruit more health workers. In the shorter term, better training, greater support and motivation can improve the efficiency of existing staff. Boosts to morale may include psychosocial support, improved availability of supplies, training on universal precautions, and post-exposure prophylaxis (PEP), which helps to prevent health workers becoming infected with HIV. ³¹

Another proven remedy is the recruitment of lay counsellors, either paid or unpaid, to help provide counselling. With a few weeks training and ongoing supervision, lay counsellors can give a good quality service and lighten the workloads of full-time professionals. ^{32 33 34}

Testing methods

The conventional form of HIV testing in antenatal clinics is called VCT – voluntary counselling and testing. According to the VCT approach, women are offered an HIV test and must choose whether they think it is worth accepting or not: many decide not to bother. An alternative model is routine testing, whereby women are told that HIV testing is a standard part of antenatal care, but they can opt out if they want to. Removing the special status that is often given to HIV testing helps to make it more acceptable.

Numerous studies have found that switching from VCT to routine testing can dramatically improve take-up of testing in PMTCT programmes. For example, at one hospital in rural Uganda, the proportion of pregnant women with documented HIV status at discharge more than doubled from 39% to 88% after routine testing was introduced. ³⁵ When Botswana changed its testing procedure nationwide in 2004, it immediately increased testing rates from 75% to 90%. ³⁶

The process can be made even more efficient if the basic information given before testing is addressed to small groups instead of individuals. One-to-one counselling on personal issues can then follow as required. ³⁷

Yet despite its benefits, routine testing doesn’t address the issue of women not returning to receive their results. This is why some programmes have introduced rapid testing. Unlike conventional HIV tests, which take days or even weeks, rapid tests can produce a result in as little as twenty minutes. This usually means that many more women learn their HIV status. ^{38 39 40} However, it also means that women have less time to prepare themselves for the result.

PMTCT interventions can still be effective in the third trimester, during labour and even after delivery. Programmes should therefore seize every opportunity to offer testing to women of unknown HIV status. They should also consider retesting women who were previously negative, in case they have since become infected⁴¹ . A study of eight hundred pregnant women in Botswana showed an estimated 2% of pregnant women who had previously taken part in routine testing for HIV and were found to have a negative status developed HIV later in pregnancy or during postpartum. Therefore women with acute HIV infection and those who became infected after routing testing were missed. Using these results Lu L et al estimated 43% of mother to child infections in Botswana in 2007 may be due to undetected HIV infection late in pregnancy and postpartum. By integrating HIV counselling and testing into all parts of the maternal and child health system – including family planning clinics, labour and delivery services, postpartum care and even immunisation clinics – PMTCT programmes can reach significantly more women. ^{42 43 44}

These issues are discussed in more detail in our HIV testing in pregnancy page.

Fear and distrust

Some women refuse HIV testing because they are afraid of learning that they have a life-threatening disease – afraid that the resulting worry and stress will quicken death:

“I would like to know my status if this will prevent my baby from getting infected, but on the other hand I fear knowing that I am among the dead and I am to experience much suffering of AIDS, so I would not want to know my HIV status for fear of those deep thoughts.” - Polly, south-west Uganda ⁴⁵

Others refuse because they perceive few benefits of testing, either to their unborn babies (due to poor counselling, distrust or misunderstandings) or to themselves (if they are unlikely to receive long-term treatment).

The effects of PMTCT interventions are invisible, and they are based on medical concepts that are alien to traditional cultures. As health worker Macharia Kamau explains:

“Labour is already a stressful environment. You are pregnant, poor, vulnerable, marginalized, uneducated. At that point, what do you rely on? What your mother told you when you left home? Your cultural beliefs – or this stranger who’s standing there saying, ‘Take this pill?’” ⁴⁶

One study in Côte d’Ivoire found that a significant number of pregnant women who had been diagnosed with HIV were unwilling to take part in follow-up visits because they had had bad experiences when dealing with health workers. ⁴⁷ Problems included distrust of the staff and their medicines, dissatisfaction with counselling, disbelief of test results, and fear of hostile staff.

To allay concerns, clinic staff should try to be approachable and supportive, while programmes should seek to raise community awareness of PMTCT services and their benefits. Such promotion may take the form of videos, talks, brochures, radio programmes or songs. Working with community leaders – perhaps by setting up advisory boards – promotes the idea of collective ownership, and can help to raise acceptance of PMTCT services. ^{48 49}

Disclosure and discrimination

Many women are concerned that, if found to be HIV positive, their diagnosis will not remain secret:

“You see the woman who wants to test has to go from the waiting room where all women gather and enter the nurse’s office. After testing she goes out of the nurse’s office in full view of the other women who will read on her face that she tested for HIV and begin rumours.” - Masete, eastern Uganda ⁵⁰

HIV-related stigma and discrimination are found in all societies and can lead to social isolation and even loss of family support. Fear of such prejudice can cause some women to refuse HIV testing, or to not return for their test results. Often the greatest worry is the reaction of a male partner:

“An infant does not only need to be born HIV negative; it needs food and shelter, something that the mother may depend on her spouse to provide. To have learned of her status without consulting her partner is risky. To talk with him is difficult. To tell her partner that she is HIV positive is risky... Further, to know she is HIV positive and not tell is risky. She will be frightened about her own fate. Against these risks, she balances a new intervention with as yet no visible impact. In this tragic calculus, not having a test may seem the better path.” ⁵¹

Among pregnant women who do take a test and are found to be HIV positive, a high proportion (sometimes up to 70%) choose not to tell their partners. Most are afraid of violence or abandonment: in many societies it is common for men to blame their partners for being infected, even if they too have HIV. ^{52 53}

Disclosure to health workers and midwives can be hindered by concerns about confidentiality

An HIV positive, pregnant woman who has not disclosed her diagnosis to her partner, family or friends is generally less likely to accept preventive drugs and to practise unconventional methods of infant feeding, for fear of revealing that she is infected. PMTCT programmes should therefore seek to make disclosure less difficult for their clients, for example by running support groups or anti-stigma campaigns. ⁵⁴ They might also try to identify and assist those who wish to avoid or defer disclosure. ⁵⁵

One good idea is to involve male partners in the PMTCT programme. If couples are counselled and tested together then there is less potential for blame and recrimination. Counsellors can emphasise the man’s responsibility for protecting the health of his partner and family, and can promote the use of PMTCT and other services, resulting in much higher take-up rates. ^{56 57 58}

Possible ways to increase male participation include hand delivered invitations and routine testing for men who accompany their partners. ⁵⁹ Unfortunately, it is usually far from easy to persuade men to attend what they regard as women’s clinics dealing with women’s issues. ^{60 61}

Disclosure to health workers and midwives is also very important, especially at the time of delivery, but can be hindered by concerns about confidentiality. A less common worry is that health workers or traditional birth attendants might refuse to help someone whom they know to be infected:

“We deliver at our local midwives, who do not have gloves, so if you tell her that you are sick, that you have the virus, she may refuse to attend … so you don’t tell her.” - Jane, south-west Uganda ⁶²

Possible improvements include better training of health workers and midwives, and clinic layouts designed to ensure privacy.

Drug effectiveness and adherence

Nevirapine, given in one dose each to mother and child, is by far the easiest type of drug for PMTCT programmes to administer. However, it only reduces the risk of transmission by around 50%, and it can encourage HIV to develop drug resistance. This means that if a woman begins taking antiretroviral treatment within a few months of taking single-dose nevirapine, she might not receive any benefit. ^{63 64 65}

Longer courses of drugs – involving daily doses for several weeks – are more effective at preventing HIV transmission and less likely to cause drug resistance. ⁶⁶ The problem is that the obstacles that prevent women receiving nevirapine are even greater in the case of longer regimens. In particular:

• More money and resources are required to supply the extra drugs
• Women may need to make additional clinic visits to collect their medication
• The drugs can cause side-effects including anaemia
• Women who are taking pills every day and storing them at home are much less able to avoid disclosing their HIV status to their partners, friends or relatives
• Some women may have difficulty adhering to daily treatment.

Problems with drug adherence are often the result of poor patient education. Antenatal clinics commonly lack the time and expertise required to educate women about the drugs they are given; to communicate the importance of taking every dose at the right time; and to provide follow-up support as required.

Faced with such difficulties, many PMTCT programmes feel unable to switch from nevirapine to longer regimens. Some experts suggest focusing on attaining a good level of access to the single-dose drug before considering anything more ambitious. ^{67 68} Yet the unfortunate truth is that, as long as programmes supply a drug that is only 50% effective, many babies will continue to become infected.

Treatment for mothers

Ideally, pregnant women in the advanced stages of HIV disease should be offered antiretroviral treatment to protect their own health, as well as to further reduce the risk of mother-to-child transmission (which is normally higher among women at this stage of infection). Treatment prevents children becoming orphans by keeping their mothers alive for longer. It is also a powerful incentive for women to take part in PMTCT programmes:

“Women do not see the reason to test for HIV if there are no tangible benefits for themselves and their infants. The women argue that it is not enough to protect the infant from HIV; women want to survive to raise their infants.” ⁶⁹

Yet, of all drug interventions, long-term treatment is the most difficult to administer. ^{70 71} In most cases, PMTCT services are provided at antenatal clinics, while treatment (where available) is provided at treatment clinics. Even if they are located in the same building, the two programmes tend to have different working methods and separate medical records.

Treatment clinics often have little experience of dealing with the extra complications associated with treating pregnant women, and they are not used to treatment being urgent. Usually patients are put on a waiting list for weeks or even months and must undergo lengthy “treatment literacy” lessons. In the case of pregnant women, any delay increases the risk of mother-to-child transmission. In the worst-case scenario, a woman may end up receiving no preventive drugs at all before giving birth.

Antenatal clinic staff rarely have expertise in assessing which women need antiretroviral treatment. To provide this service they require special training and extra resources, preferably including expensive CD4 testing equipment. They must have time available to carry out the assessments and referrals in addition to their other duties.

Having overcome difficulties to attend an antenatal clinic, a pregnant woman may have little enthusiasm for joining another queue at her local treatment facility, especially if, despite her illness, she does not feel particularly unwell. If she does attend then there is even less chance that she’ll be able to keep her HIV status a secret.

Although there are no easy answers to these problems, a vital first step is to improve communication between the different medical services. ⁷² Beyond that, substantial investment in training and resources is required.

Feasibility of replacement feeding

Because HIV can be transmitted through breast milk, a mother’s method of infant feeding has a strong influence on the likelihood that her baby will become infected. The only certain way to avoid transmission is to abstain from breastfeeding and provide replacement foods instead. However, even where this is feasible, it is likely to increase the risk to the baby from other illnesses such as malnutrition and diarrhoea. Therefore many impoverished mothers are best advised to breastfeed even if they are HIV positive. What should never be recommended is mixed feeding – giving a baby other foods or liquids as well as breast milk – because this carries the greatest risk of HIV transmission.

Replacement feeding is not feasible and safe unless mothers have access to a reliable supply of safe water and fuel, as well as the ingredients for the food itself, and even then it can be time-consuming and expensive. These issues are discussed in more detail in our HIV and breastfeeding page.

It may seem obvious that PMTCT programmes should assist HIV positive mothers by offering free supplies of infant formula. However, there are some drawbacks to this approach. The most significant worry is that by distributing formula, clinics may inadvertently encourage mothers to give up breastfeeding, even if they don’t have HIV. ⁷³ In addition, mothers who have the resources to practise safe replacement feeding are the least likely to need free formula. Therefore some experts argue that supplying free formula is not an effective use of money.⁷⁴

Male visits to antenatal clinics

A study from Kenya revealed that where women are supported and accompanied by their male partners, they are more likely to consistently visit antenatal clinics.⁷⁵ Few men usually accompany their wives on visits to antenatal clinics for fear of being ridiculed by peers. However it has been shown that when male partners are involved, both partners can get tested for HIV, know their status, and therefore improve the baby’s chances of a healthy survival. Even dangerous practices liked forced breastfeeding or forced early weaning are less likely if both parents are involved in this decision. According to the study, HIV positive pregnant women who did not disclose their status to their partners would not return to the clinic, therefore putting the baby’s life in jeopardy.

These findings indicate that promotion of programmes aimed at increasing male attendance in antenatal care could function to reduce the risk of vertical transmission and infant mortality. About 80 percent of antenatal clinics in Kenya offer PMTCT services, but the uptake of counselling and testing is below 50 percent. The government is considering various incentives, such as waiving maternity fees for couples who attend PMTCT sessions together, to boost male participation.

Accumulation of factors

Most of the issues discussed above affect more than one stage of the PMTCT process. This means that there are many points at which failure can occur. Even if only a small proportion of women drop out at each point, the cumulative effect can be large. Therefore it is essential that programmes look at each of these points to try to improve their performance. The table below illustrates which issues affect each step of the journey towards ensuring that a child is uninfected.

Process	Issues
Attend clinic	Accessibility Fear and distrust
Offered test	Clinic resources Testing methods
Agree to test	Testing methods Fear and distrust Disclosure and discrimination Treatment for mothers (an incentive to test)
Get results	Accessibility (if necessary to return to clinic) Testing methods Fear and distrust Disclosure and discrimination Treatment for mothers (an incentive to test)
Offered drugs	Accessibility (if necessary to return to clinic) Clinic resources Disclosure and discrimination
Accept drugs	Fear and distrust Disclosure and discrimination Treatment for mothers
Take drugs	Accessibility (if necessary to return to clinic) Fear and distrust Disclosure and discrimination Drug effectiveness and adherence Treatment for mothers
Drugs to baby	Accessibility (if necessary to return to clinic) Fear and distrust Disclosure and discrimination Drug effectiveness
Safer feeding	Fear and distrust Disclosure and discrimination Clinic resources Feasibility of replacement feeding

Conclusion

In recent years, efforts to widen access to antiretroviral treatment have caught the attention of politicians, non-governmental organisations and the global media. Meanwhile, PMTCT has been largely neglected. Although some large donors and organisations are working with national governments to improve access to PMTCT services, there are few that seem to regard this as a major priority.

Yet there is plenty of evidence to show that PMTCT services can be provided through existing public health systems, even in the poorest parts of the world. Brazil, Thailand, Botswana and other countries have already made these services a standard part of maternal care. It is now time for PMTCT to be scaled-up throughout the developing world as a matter of urgency.

Swift progress will depend on strong leadership from national governments, and on the committed support of foreign donors and non-governmental organisations. It will also require sustained advocacy from campaigners and the media.

And the programmes that are provided need to ensure that they are reaching as many women as possible. As this article has shown, this means addressing not just practical issues, but also social, cultural and personal factors. People’s attitudes towards HIV are central to the success or failure of PMTCT.

These life-saving interventions need to reach more than a lucky few.

To learn more about how AVERT is campaigning for wider PMTCT coverage, and what you can do to support this drive, please visit our Stop AIDS in Children campaign page.

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