The Experience of NACWOLA, Uganda

Coping with the stigma of positive motherhood

Von Annet Biryetega

The National Community of Women Living with HIV/AIDS (NACWOLA) was founded in the year 1992 in Uganda. It started with a low profile as a support group for HIV positive women to share their problems and experiences and to support one another. Today it is a country-wide membership organization working to promote positive living for women living with HIV and AIDS through psychosocial support and economic empowerment. This also counts for “positive mothers”.

In East Africa, Uganda took the lead in responding to the HIV epidemic early on and managed to achieve reductions in prevalence already during the 1990s with the epidemic now stabilized overall. The 2006 UNAIDS statistics for Uganda revealed that Uganda’s prevalence marginally increased to 6.7 percent in 2005, and that it was significantly higher among women (nearly 8%) than among men (5%). Factors such as poverty, gender inequality and social marginalization of specific population groups are contributing factors that put women and children at great risk of HIV infection.

Challenges of positive motherhood

Many HIV-positive women are not formally employed. Therefore they do not have a reliable source of income. This means that they have to depend on their husbands for all their essential needs. Such a situation makes pregnant positive mothers very vulnerable because they often cannot afford the healthy diet required for women infected with HIV during pregnancy. Many African men in the rural communities would prefer spending their income on alcohol than prioritizing the needs of their wives.

Women have little access to medical treatment as they depend on the man’s permission and money to be able to attend a health facility. A Ugandan woman elaborates: “Here in Busia, a man controls everything, the woman can’t have any income. She has to depend on the willingness of the husband to go for medical services”.

The woman’s position in a home is that of a dependent - submissive to her husband. This violates her rights to make informed decisions, to economic empowerment and self-determination, as well as to access treatment, care and protection, especially in the instance of women living with HIV and AIDS. A pregnant woman can develop health conditions which require immediate, emergency medical attention, but she may not have transport to go to hospital, and even if she had the money she would have to wait for her husband to give her the permission to travel there.

The cultural setting in many African societies is predominantly patriarchal. The practice of polygamy is also still widely practiced. In various societies a man is entitled to marry many wives as long as he is in position to pay the bride price. Under Islamic law, also recognized by the Marriage Act, a Moslem man has a legal right to marry four wives. Other conditions that encourage polygamy include statistics that indicate an irregular ratio of women to men. This has resulted in a wide spread belief that polygamy is necessary; which concurrently provides a ripe environment for the spreading of sexually transmitted infections (STIs) as a number of people co-exist in “one” sexual relationship.

Most women in Uganda live in rural areas and have very little access to information about the existing health services. For instance most women suffering from an STI may be unaware of the fact – which is very dangerous to an HIV-positive pregnant mother. There is limited support within the community to avert the situation due to lack of access to treatments for STIs and regular sexual health screening. Challenges also surround access to support for safe conception as well as services for the Prevention of Mother to Child Transmission (PMTCT).

NACWOLA works with HIV-positive women and has experience of their fear of stigma as well as their social exclusion. Irine is one of them. She lost her husband a few years back. Shortly after his death, members of the community asked the Local Commissioner to tell Irine that women in the area are worried because she was a potential danger. When she asked for support, first the Local Commissioner and then her bother-in-law who knew what his bother died of demanded sex before they would intervene on her behalf.

In the early years of the AIDS epidemic, there was a tendency to discourage HIV-positive mothers from getting pregnant, due to the fear that their bodies would be further weakened and concerns that the newborn will soon be left an orphan. Such a concept has been challenged by scientific findings, the life-lengthening effects of antiretroviral therapy and recent efforts to establish PMTCT programmes. Unfortunately some people in the communities still lack information or simply do not trust such programmes. So it comes to be that stigma of positive mothers and their new born babies continue.

All mothers are expected to breastfeed their babies, therefore family members in most cases traumatize a mother who keeps her baby on infant formula. It is also expensive to buy infant formula so some mothers start on the formula feeding method but they get defeated along the way.

A rights based approach

NACWOLA’s specific ways of supporting HIV-positive mothers to cope with stigma is to encourage them to be open and share their experience with other positive women while keeping the spirit of optimism. NACWOLA also promotes psychosocial support through initiatives such as “Memory Work” and the “Hope Project”. In order to make positive women more independent, NACWOLA encourages income generating activities for the women and their family. It is important to keep the family relationship peaceful. Women are taught that living with HIV requires a holistic approach. This includes good nutrition, counselling, information about drugs and their side effects and an understanding of the context of women’s lives. NACWOLA promotes access to prevention, care and treatment services by providing counselling and referrals to other service providers.

The challenge of some people in the communities who reject babies born to HIV-positive mothers arises from ignorance. Prevention of Mother to Child Transmission (PMTCT) programmes are fairly new and not everybody has all the necessary information about their efficacy and safety. In Uganda, the PMTCT programme was started by the Ministry of Health as a pilot project in 1998 in five sites and then expanded to cover the entire country. PMTCT is now offered by service providers like The Aids Support Organization (TASO). At the TASO PMTCT site supported by the US Centre for Disease Control and Prevention (CDC) and WHO, HIV-positive pregnant women are screened for ART eligibility and provided with the necessary treatment as appropriate. But the overall reach of such services is still limited. According to the Uganda AIDS Commission, in 2005 just 12 percent of HIV-positive pregnant women received antiretroviral treatment to prevent transmission of the virus to their unborn children.

NACWOLA supports women who have tested HIV positive to access such programmes. This returns hope to HIV-positive mothers by assuring them that, if the programme is adhered to, there is a high probability to save the unborn baby from becoming infected. This revives the wish of women that they can still practice their reproductive health rights and have healthy children.

The rights based approach of NACWOLA aims to strengthen HIV-positive women’s self confidence and self esteem, and support them in setting up self help groups. Furthermore, NACWOLA plays a significant role by bringing their experiences into the process of developing national priorities and policies, and by actively participating in the provision of services targeted at such women. NACWOLA promotes the rights of HIV-positive women, and focuses attention on their needs through high level advocacy. NACWOLA is recognized as playing an important role and being uniquely situated with regard to gender inequality and HIV in Uganda by virtue of its composition as a membership organization run for and by HIV positive women.

* Annet Biryetega is the Coordinator of the National Community of Women Living with HIV/AIDS in Uganda NACWOLA based in Kampala. Contact: nacwola@infocom.co.ug, www.designerswithoutborders.org/nacwola.html