Reproductive Rights for Women Affected by HIV/AIDS? A Project to Monitor Millennium Development Goals 5 and 6

This 100-page report shares the results of a project carried out by a group of 7 non-governmental organisations (NGOs) based in Argentina, Kenya, Mexico, Poland, South Africa, the United Kingdom, and the United States. Their task: to monitor benchmarks related to two Millennium Development Goals (MDGs) relevant for the reproductive health of women affected by HIV/AIDS:

• MDG 5, which aims to improve maternal health by reducing the maternal mortality ratio by 75%
• MDG 6, which focuses on combating HIV/AIDS, malaria and other major diseases.

Participating NGOs - Ipas, Women Fighting AIDS in Kenya (WOFAK), Punto de Encuentro de la Comunidad, A.C. (PECAC), the Federation for Women and Family Planning, the Fundación de Estudio e Investigación de la Mujer (FEIM), the Gender AIDS Forum and the International Community of Women Living with HIV/AIDS - tried out the use of a monitoring tool - a resource titled Fulfilling Reproductive Rights for Women Affected by HIV: A Tool for Monitoring Achievement of Millennium Development Goals. Designed as a data-collection method, this tool is intended to make the MDGs more relevant to the daily work of organisations defending the rights of women affected by HIV/AIDS. Almost all the project partners gathered most of their information using oral or written surveys comprising sample questions provided by Ipas; 4 projects also organised focus group discussions (FGDs) with respondents. All the partner organisations reviewed documentation related to HIV/AIDS policies, laws, regulations and programmes within their countries, as well as a selection of information, education and communication (IEC) materials. They were asked to give respondents a copy of the Barcelona Bill of Rights (click here for a summary of this document, which is also available as an Appendix within this report). Through this process, each organisation was asked to assess 10 benchmarks from the monitoring tool.

"The data collected by the different projects using the monitoring tool showed that much remains to be done if MDGs 5 and 6 are to be realized." For example,

• Availability of voluntary counselling and testing (VCT) and post-exposure prophylaxis (PEP) - Many respondents lack pertinent knowledge. Further, access to VCT in rural areas is lacking, in some countries, and provision of PEP for survivors of sexual assault appears to be a relatively rare occurrence in all the project sites except South Africa.
• Fertility Regulation in the Context of HIV/AIDS - Women's access to general information about family planning and contraceptive supplies varies between and within the project countries. Knowledge of and access to emergency contraception (EC) is still limited, and the topic of abortion was avoided by many respondents.
• Parenting Options for HIV-Positive Women - Very little attention has been given to issues such as the availability of assisted conception methods and legal adoption by HIV-positive people.
• HIV/AIDS-Related Stigma and Discrimination - While some respondents (and project data collectors) knew of health facilities that provide high-quality care, all the projects reported that stigma and discrimination against women living with HIV/AIDS persist within the health-care sector (even during obstetrical and gynaecological care).
• Human Rights as a Framework for Provision of Programmes and Services - The large majority of respondents in all countries were interested in receiving more
  information about rights. However, both health-care providers and women living with
  HIV/AIDS did not seem clear on how such documents could be relevant to their work
  environments and daily lives.
• Involvement of HIV-Positive Women in Reproductive-Health Policies and Programmes - On the whole, the project results indicated that women living with HIV/AIDS are not involved in policy and programme formulation, design and evaluation at the local or national levels.

These findings suggest the following recommendations, shared in this report and summarised below, regarding use of the monitoring tool and the particular needs that must be addressed in fulfilling the reproductive rights of women affected by HIV/AIDS:

• Expand and intensify training for health professionals on occupational risks of HIV infection in conjunction with capacity-building on the rights of people living with HIV/AIDS - "HIV-positive women who have had treatment-literacy
  training can help explain why it is important for patients to be partners with health
  professionals in treatment implementation."
• Employ women living with HIV in prevention and VCT programmes as paid staff - Consult HIV-positive women, for example, about the kinds of messages that might have motivated them to have an HIV test sooner - and pay them for their participation - and train and employ (pay) them to serve as counsellors.
• Prepare and publish materials on family planning, contraception and options for
  avoiding and dealing with unwanted pregnancies in the context of HIV/AIDS - "While such materials can be developed through collaboration between governmental
  AIDS and reproductive-health/family-planning programs, NGOs can also play a role."
• Advocate for increased availability and accessibility of EC, PEP, and safe, legal abortion - "Information provision alone is not enough...: women's awareness and understanding of their rights will be meaningless if services are not available. Lobbying and advocacy on these issues with NGOs, through the media and toward policymakers is an important step..."
• Advocate and lobby for the possibility of HIV-positive women and men adopting
  children - "NGOs and government agencies entrusted with adoption programs
  should collaborate with associations of people living with HIV to discuss how programs
  can ensure that HIV-positive people are not automatically disqualified as prospective
  adoptive parents because of their infection. Adoption as a parenting option should be
  included in informational materials on sexual and reproductive health for people
  affected by HIV. Associations of people living with HIV can also begin disseminating
  stories about successful adoptions through newsletters, websites and conferences..."
• Disseminate information on human-rights standards in practical terms relevant to recipients' work and lives - However, "Mere dissemination of human-rights documents is nevertheless insufficient....They need to understand which international rights treaties their government has ratified, how those rights can be claimed through laws and regulations (which requires lobbying lawmakers), and how private citizens can bring forward complaints when their rights are violated....Information about these measures can be disseminated through articles in newsletters and journals, through brochures and leaflets, and through capacity-building sessions for both service providers and clients/patients."
• Promote capacity-building and skills-building for women affected by and living with HIV/AIDS so that they can participate meaningfully in advocacy and policymaking. - "NGOs and universities can provide a wealth of information on advocacy and policymaking strategies and procedures, and can contribute greatly to enhancing women's skills....NGOs can mentor and guide women in developing skills such as proposal writing, program design, strategic planning, documentation of program achievements, and monitoring and evaluation."

Reflecting on methodological issues that emerged from the research process itself, the author stresses that "providing the monitoring tool...together with some very simple guidance on implementing a data-collection exercise, was sufficient to enable partners in very different countries to collect information on the same topics....As well as the project team members, respondents also found this to be a valuable exercise for themselves and their organizations....It even motivated some respondents to begin undertaking their own research to increase their knowledge about the various issues raised - which was precisely one of the project goals."

Click here to access a related peer-reviewed summary on the Health e Communication website, and to participate in peer review.