Turan, Janet M. PhD, MPH*; Nyblade, Laura PhD†
*Department of Health Care Organization and Policy, School of Public Health, University of Alabama at Birmingham, Birmingham, AL
†Global Health Division, Research Triangle Institute (RTI) International, Health Policy Project, Washington, DC
The authors have no conflicts of interest to disclose.
This letter was produced under the Health Policy Project (HPP) funded by USAID (under Cooperative Agreement No. AID-OAA-A-10–00067), which includes support from the President's Emergency Plan for AIDS Relief. HPP is implemented by Futures Group, in collaboration with the Centre for Development and Population Activities, Futures Institute, Partners in Population and Development, Africa Regional Office, Population Reference Bureau, and Research Triangle Institute (RTI) International.
To the Editors:
The global community has set the following 2 important goals: the virtual elimination of new HIV infections among children; and a 50% reduction in HIV-related maternal mortality by 2015.1 However, HIV infection among pregnant women and infants remains unacceptably high—in the 2012 World AIDS Day report, UNAIDS estimated that globally there were 330,000 new HIV infections in children in 2011, and 37,000 pregnant women died because of HIV in 2010.2 This situation persists despite strong evidence of the effectiveness of antiretroviral therapy for improving maternal health and preventing mother-to-child transmission (PMTCT). PMTCT rates as low as 1%–5% can be achieved even in low-income countries,3,4 and HIV-infected pregnant women who receive antiretroviral therapy for their own health can live longer and healthier lives.5
Despite progress in expanding prevention of PMTCT services in sub-Saharan Africa and other low-resource settings,6 recent data reveal serious challenges, chiefly the low uptake and use of proven effective interventions for PMTCT.7 Although the need to expand the supply of services continues, mounting evidence demonstrates an urgent need to examine and respond to demand-side barriers in women's lives that affect their initiation and retention in PMTCT programs.8 We argue that HIV-related stigma is a key barrier to service utilization and that it will be impossible to reach the global goals without addressing stigma.
Women of reproductive age—and especially pregnant women—are particularly vulnerable to the effects of HIV-related stigma. Because a pregnant woman is often the first family member to be tested for HIV due to her contact with the antenatal clinic, she may be blamed for bringing the virus into the family and faces risks of social ostracism, gossip, abandonment, and violence if others discover her HIV-positive status.9 These factors are often compounded by gender norms that penalize women for perceived promiscuity and place women in positions of socioeconomic vulnerability.10
Our recent review of the PMTCT literature revealed a wealth of both quantitative and qualitative evidence of the adverse effects of HIV-related stigma on uptake and retention of services necessary for successful PMTCT.11 The multiple steps required to complete a full PMTCT program all increase the potential for unwanted disclosure of HIV status, heightening both women's fears of and the possibility of experiencing stigma at each step. Studies in South Africa, Kenya, and Zimbabwe have found significantly reduced rates of antenatal HIV testing, skilled birth attendance, and PMTCT adherence for women who report high levels of stigma and related lack of disclosure of their HIV status. There is even evidence that in a high HIV prevalence setting, HIV-related stigma can negatively affect maternity service utilization for the majority of women who are HIV negative, if the community starts to associate use of maternity services with HIV and AIDS.12 Modeling exercises indicate that these effects of stigma are cumulative across the PMTCT cascade and therefore may significantly affect HIV infection rates among infants; data from South Africa suggest that infant HIV infections could be reduced by 33%–44% if stigma could be markedly reduced.13
Alongside modifications to make clinical services more effective and accessible, there is also a need to integrate HIV-related stigma reduction components into services for pregnant and childbearing women, their male partners, and their infants in low-resource settings. Existing stigma-reduction tools and interventions,14 and measures to evaluate progress,15 can be modified for the specific needs of pregnant women. To reduce women's fears of stigma and help cope with stigma, programs can set up support groups for pregnant women living with HIV and involve women living with HIV in PMTCT service delivery. To reduce stigma and discrimination that women experience in families and communities, programs should develop culturally appropriate activities to reach out to and positively engage the communities and male partners of pregnant women living with HIV. However, it should be kept in mind that any PMTCT campaigns aiming to increase awareness in communities should be designed with the participation and input of advocacy groups and pregnant women living with HIV. Health services for pregnant and childbearing women need to identify stigma, provide health worker stigma-reduction training, and monitor stigma. Finally, it is essential to advocate for the development and implementation of policies that protect the rights of all persons living with HIV; that ensure support systems and legal protections for women; and that mandate nondiscriminatory treatment within all maternal, neonatal, and child health services.
It is unlikely that the global commitments to virtual elimination of new HIV infections in children and reduced HIV-related maternal mortality by 2015 will be met unless major efforts at the global, national, community, and facility levels are made to identify and counter the multiple manifestations of HIV-related stigma facing pregnant women. These efforts should include setting targets for stigma reduction, measuring the impact of stigma-reduction interventions on service uptake, allocating resources for interventions, and monitoring the effects of policies aimed at reducing HIV-related stigma. Although it is yet to be fully recognized, reducing stigma is an essential piece of delivering care for all women, men, and children.
1. UNAIDS. Countdown to Zero: Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive. Geneva, Switzerland: Joint United Nations Programme on HIV/AIDS; 2011.
2. UNAIDS. World AIDS Day Report 2012. Geneva, Switzerland: UNAIDS; 2012.
3. De Vincenzi I. Triple antiretroviral compared with zidovudine and single-dose nevirapine prophylaxis during pregnancy and breastfeeding for prevention of mother-to-child transmission of HIV-1 (Kesho Bora study): a randomised controlled trial. Lancet Infect Dis. 2011;11:171.
4. Shapiro RL, Kitch D, Ogwu A, et al.. HIV transmission and 24-month survival in a randomized trial of HAART to prevent MTCT during pregnancy and breastfeeding in Botswana (The Mma Bana Study). AIDS. 2013. Accessed June 14, 2013. doi: 10.1097/QAD.0b013e32836158b0.
5. Schouten EJ, Jahn A, Midiani D, et al.. Prevention of mother-to-child transmission of HIV and the health-related Millennium Development Goals: time for a public health approach. Lancet. 2011;378:282–284.
6. WHO, UNAIDS, UNICEF. Global HIV/AIDS Response: Epidemic Update and Health Sector Progress Towards Universal Access: Progress Report 2011. Geneva, Switzerland: WHO; 2011.
7. Stringer E, Ekouevi D, Coetzee D, et al.. Coverage of nevirapine-based services to prevent mother-to-child HIV transmission in 4 African countries. JAMA. 2010;304:293–302.
8. Turan JM, Nyblade LN, Monfiston P. Stigma and discrimination as barriers to PMTCT and HIV care and treatment for maternal, paternal, and infant health. Presented at The XIX International AIDS Conference, July 22–27, 2012, Washington, DC.
9. Bond V, Chase E, Aggleton P. Stigma, HIV/AIDS and prevention of mother-to-child transmission in Zambia. Eval Program Plann. 2002;25:347–356.
10. Strebel A, Crawford M, Shefer T, et al.. Social constructions of gender roles, gender-based violence and HIV/AIDS in two communities of the Western Cape, South Africa. SAHARA J. 2006;3:516–528.
11. Turan JM, Nyblade L. HIV-related stigma as a barrier to Achievement of global PMTCT and maternal health goals: a review of the evidence. AIDS Behav. March 9, 2013. Accessed June 14, 2013. doi: 10.1007/s10461-013-0446-8.
12. Turan JM, Hatcher AH, Medema-Wijnveen J, et al.. The Role of HIV-related stigma in utilization of skilled Childbirth services in Rural Kenya: A Prospective Mixed-Methods Study. PLoS Med. 2012;9:e1001295.
13. Prudden H, Nyblade L, Dzialowy N, et al.. Modelling the Impact of Stigma on the Prevention of Mother-to-Child HIV Transmission for a Setting in South Africa. Washington, DC: Health Policy Project and London School of Hygiene and Tropical Medicine;Forthcoming; 2013.
14. Carr D, Eckhaus T, Brady L, et al.. Scaling Up the Response to HIV Stigma and Discrimination. Washington, DC: International Center for Research on Women; 2010.
15. Jain A, Nyblade L. Scaling Up Policies, Interventions, and Measurement for Stigma-Free HIV Prevention, Care, and Treatment Services. Washington, DC: The Health Policy Project; 2012.