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Falling through the cracks: PPTCT in India

By Maya Indira Ganesh

Parent to child transmission of HIV in India infects 56,700 children every year. The third phase of the National AIDS Control Programme aims to reach 7.5 million women and give prophylactic treatment to 75,600 infected mother-baby pairs. The task is ambitious: in 2005, just 2.9 million women were reached, though the target was 6.9 million

Prevention of parent to child transmission (PPTCT) of HIV/AIDS is a complex task. Like other efforts against the epidemic, much hinges on how effectively scientific progress and research can be transmitted through the under-resourced public health systems of most parts of the HIV-affected world. An anecdote from Africa shows how this can sometimes be successful (1).

In 2000, the pharmaceutical company Boehringer Ingelheim made large-scale donations of Nevirapine -- a single-use drug for mother and baby which enables the prevention of transmission of HIV -- to select countries in the developing world. However, the company found that countries were not accepting their donation. At the behest of the corporation, the international non-profit organisation PATH found that the resistance was a logistical issue. A woman giving birth at home needs to administer a teaspoon of Nevirapine syrup to her newborn, but many mothers have to travel miles for a chance to meet a health worker before they deliver, a last chance to actually collect the medication that could be lifesaving. Even if she were to collect the medication, how would she transport it home, keep it clean and remember how and when to administer it to her baby? Ingenious health workers in Kenya found a way to use materials at hand to fill an oral dispenser with the dosage, seal it, wrap it in aluminium foil and pack it in an old carton from another medication. PATH eventually stepped in to create safe, hygienic and clearly marked packaging for a single-use oral dispenser. The Nevirapine pouch reduces the risk of the syringe being accidentally squeezed, has clear instructions reminding the mother to give her baby the medicine, and a place for health workers to write down the medicine’s expiry date to prevent the medicine being handed off to another woman.

However, such stuff of great public relations is less common than could be wished for.

Programme requirements

Preventing parent to child transmission of HIV requires the safe and ethical testing of a pregnant woman to find out whether or not she is HIV-positive. Her husband needs to have been tested as well. She needs to return to the health centre to collect her test results and, if she is positive, she needs to be fully informed of what to expect and how she can minimise the risk of transmission. If she opts to have her delivery at a different health centre (if not at home), or possibly at her mother’s house which may be far away from where she’s received antenatal care, she has to be confident of sharing her HIV status and ensuring that she and her baby both receive nevirapine. She has to contend with the pressure of family and her own conditioning about how to feed her infant (replacement feeding poses the least threat of infection as against breastfeeding or mixed feeding). And so on. Therefore, ensuring that an HIV-positive woman minimises the risk of transmission of infection to her baby is fraught with the possibility of women falling out of the system, worsened by the limited access that women have to services anyway.

Parent to child transmission of HIV in India amounts to less than 4% of HIV infections but that still translates to 56,700 children infected every year (2, 3). This figure implies burdens and responsibilities for entire families -- from the spiralling cost of healthcare to dealing with social issues such as stigma and discrimination from the very beginning of the child’s life.

The PPTCT programme in India is part of a four-pronged strategy (4) that recognises vulnerabilities to HIV through the lifecycle. From prevention education for adolescents to the minimisation of the risk of HIV transmission in pregnant women, to the continuing care and support of affected and infected mothers and babies, the strategy aims to be an overarching focus on the entire lifecycle of risk and vulnerability. According to the national PPTCT guidelines, government hospitals should be able to provide HIV-positive pregnant women with Nevirapine as antiretroviral (ARV) prophylaxis, and at the onset of labour. The newborn infant is also provided a single dose of Nevirapine within 72 hours of delivery.

Counselling, consent and communication

However, the issue in India eventually is one of how the public healthcare system reaches out to women and children at risk. As of December 2005, there were 488 PPTCT centres in the country, 90% of which were in high-prevalence states. NACO reports that 2.9 million women have been reached through its programmes by 2005, whereas the target for the year was 6.9 million (5). Under NACP III (National AIDS Control Programme 2007-2012) NACO aims to reach 7.5 million women and provide ART (antiretroviral therapy) prophylaxis to 75,600 infected mother-baby pairs (6). The PPTCT programme, funded by the Elizabeth Glaser Paediatric AIDS Foundation (EGPAF), is another initiative that supports nine organisations in Andhra Pradesh, Maharashtra, Karnataka and Tamil Nadu in diverse private sector, faith-based and NGO-supported healthcare settings (7). EGPAF’s support is focused, yet is the only other significant player in PPTCT service delivery.
Within these large national public health efforts, the details matter. The PPTCT programme mandates that women are to be counselled on HIV and informed enough to give consent. How this is handled is difficult to say, and not many assessments of this aspect of PPTCT services are readily available.

What is becoming the norm is ‘opt out’ testing, in which all women are informed either verbally or through information leaflets that they will be tested for HIV unless they specifically state they don’t want it. The rationale behind opt out testing is that it normalises HIV testing and tries to ensure that as many women as possible are tested. The problem with this approach of ‘sweeping’ a whole population is that, in the regimented routine of antenatal care settings, women may not realise that they can refuse a test, particularly if they are young, poor and not well-educated.

An assessment of innovations in PPTCT service delivery in four Mumbai hospitals conducted for UNICEF and the Mumbai District AIDS Control Society by this writer found counsellors and doctors saying that providing counselling was one of the most challenging aspects of PPTCT in a busy hospital setting. Beyond addressing the fear, stigma and misunderstandings associated with HIV, counsellors found it difficult to address the more sensitive issues of sexuality, gender, addressing both male and female partners and their needs (8). Moreover, counsellors consistently raised the issue of the pressure to fill in endless registers and records, a common administrative burden that seems to mark the fight against HIV; sometimes women get herded through the tests and counselling when, in fact, that is precisely where they require time and attention. There appears to be a sincere effort to ensure that women don’t miss out, but this could result in hurried counselling.

Many women may have missed or avoided every opportunity to be tested and then arrive for delivery at centres where PPTCT facilities are available. Despite the potential benefits of reduced transmission risks, rapid testing during labour raises ethical dilemmas about pre-test counselling and the ability of women to give consent at such a time. Moreover, women in labour need to be aware that rapid tests also result in false positives and they need to be reassured that ART will be stopped if confirmatory tests are negative. All this requires a skilled and sensitive labour room within an efficient healthcare setting.

A continuum of care and support

After an HIV-positive mother delivers her baby, she should ideally have a network of care and support services to ensure that she maintains her health and that of her baby. Reproductive and sexual healthcare options, general health resources, counselling and emotional support systems, nutritional advice, are just a few of the things an HIV-positive mother needs. These can be provided through a network of referrals to public and private healthcare settings, CBOs and NGOs. A recent study by Horizons conducted in three locations across the country found that this was limited (9) although bigger towns and cities have access to a range of services. Interestingly, this study found that women in Imphal, Manipur, had better access to a range of well-networked healthcare settings because the prevalence of HIV has, over time, implied the need for services. The population has also had to deal with HIV in their midst for a lot longer. The assessment of Mumbai hospitals found that health centres that developed ties with NGOs were generally better at outreach and in follow-up care and support to HIV-affected families (8).

Are fathers really part of the programme?

Male partners are traditionally not welcomed in an antenatal care setting. While individual centres may make efforts to reverse this, the woman is more likely not to get the care she needs if her male partner does not understand the risks and vulnerabilities associated with being HIV-positive. For example, while PPTCT policies mandate the routine testing of women, their male partners are often not tested. This could result in situations like the following: a newly-married pregnant woman’s HIV-positive husband is not tested, and her test results emerge negative (as she is in the window period, or has had enough sex to get pregnant but not enough to contract HIV) when in fact she and her child (and future children) face a significant risk. While the change of acronym from the earlier PMTCT (prevention of mother to child transmission) to PPTCT was intended to call attention to the role and responsibility of men in the transmission of HIV to their children, the recent NACO policy guidelines and strategic targets do not specifically mention, apart from the testing of husbands, how men as fathers and caregivers are to be incorporated into antenatal care of the mother-to-be.

What about drug resistance?

A significant technical issue in PPTCT is the drug resistance that mothers develop to nevirapine. This prevents them from being able to take the drug should they become pregnant again. Recent research from the Harvard AIDS Institute in Botswana indicates that delayed dosage of the drug could address the problem, as drug resistance decreases over time (10). However, studies of this nature in India are not conclusive; it is unclear what the effects of single-dose Nevirapine are on mothers and babies. UNICEF and NACO are now planning to conduct a nationwide study of existing drug regimens and will propose shifts in treatment protocols if they do indeed find that single-dose Nevirapine significantly affects HIV-positive mothers and babies (4). NGOs supported by EGPAF follow a combination of drugs, providing a tail of Zidovudine and Lamivodine to address the issue of resistance (Dr Sanjeevani Kulkarni, PRAYAS, personal communication). However, this is not a national protocol endorsed by NACO and is not followed across its PPTCT facilities.

With drug protocols being patchy and research forthcoming, it is as yet unclear what the fallout will be. However with Nevirapine being relatively cheaper than the more complex combination drug therapies, and easy to administer, in a country like ours it may be the only chance for some women to protect their babies. There have also been concerns about drug toxicity in long-term use of Nevirapine resulting in skin infections and life-threatening liver toxicity; underweight women face a particular risk from Nevirapine-related liver toxicity, which is not uncommon in India. Diagnosing and managing such adverse effects are not easy and require constant medical attention and monitoring, not something that the average HIV-positive mother in India has access to (11).  

PPTCT is about many things -- both the capacity of public healthcare as well as of the people who staff and run them. It is about the social and cultural issues and attitudes surrounding pregnancy and childbirth and how they are integrated into the delivery of information and treatment. It is about balancing an efficient service delivery mechanism against an empathetic engagement with women and babies at risk. For programmes to be effective there are many variables to be controlled; systems being as they are, things fall through the cracks, and unfortunately so do far too many women and children.


  1. PATH. Nevirapine Pouch: Packaging HIV Protection for Infants. 2007. Accessed online at http://www.path.org/projects/nevirapine_pouch.php  on October 17, 2007
  2. Indian Academy of Paediatrics (IAP) and National AIDS Control Organisation (NACO). Guidelines for HIV Care and Treatment in Infants and Children. New Delhi: NACO; 2006. In Mahendra et al. Continuum of care for HIV-positive women accessing programmes to prevent parent to child transmission: Findings from India. Horizons Final Report. Washington DC: Population Council; 2007
  3. UNICEF. UNICEF India -- Children’s issues: HIV/AIDS http://www.unicef.org/india/children_2358_htm. 2006. In Mahendra et al Continuum of care for HIV-positive women accessing programmes to prevent parent to child transmission: Findings from India. Horizons Final Report. Washington DC: Population Council; 2007
  4. Mahendra Vaishali S et al. Continuum of care for HIV-positive women accessing programmes to prevent parent to child transmission: Findings from India. Horizons Final Report. Washington DC: Population Council; 2007
  5. UNICEF. Children and AIDS Programme Update. New Delhi: UNICEF; July 2007
  6. NACO. UNGASS India Report: Progress Report on the Declaration of Commitment on HIV/AIDS. 2006.Accessed online at www.youandaids.org on October 22, 2007
  7. NACO/WCD/UNICEF. Policy Framework for Children and AIDS, India. New Delhi: NACO; 2007
  8. Elizabeth Glaser Paediatric AIDS Foundation. www.pedaids.org. Accessed on October 20, 2007
  9. Ganesh I. Innovations in PPTCT Service Delivery in Four Mumbai Hospitals: A Qualitative Assessment. Unpublished report for UNICEF and MDACS. Mumbai; November 2005  
  10. Lockman et al. Response to Nevirapine-Based Antiretroviral Therapy After Single-Dose Nevirapine, New England Journal of Medicine. January 11, 2007. Accessed online at http://www.aids.harvard.edu on October 15, 2007   
  11. Aidsmap. Treatment and Care during Pregnancy. 2007. Accessed online at http://www.aidsmap.com on October 22, 2007

(Maya Indira Ganesh writes on issues related to gender and health. She has been associated with several organisations working with gender, sexuality, child sexual abuse and domestic violence)

InfoChange News & Features, January 2008