HIV-Positive Women Talk It Over in ‘Mama’s Club’

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Mama's Club members share AIDS information.

KAMPALA, Uganda (WOMENSENEWS)–Grace Tumuhirwe was infected with the AIDS virus when her uncle raped her at the age of 12.

A few years later, when she began to show symptoms, her family threw her out, and she rented a room in a Kampala slum. She found a boyfriend, who helped her with money, and soon she found herself pregnant. Now she has a year-old HIV-positive son.

Robinah Kaimbombo was married off as a teen to a much older man. He died of AIDS a decade later, leaving her with four children and infected with the virus herself. She was relieved when another man came along and offered to help with the bills. She insisted they use condoms, but one night, he came home drunk and raped her and she became pregnant again. When her daughter was born HIV-positive, her husband disappeared.

Fatumah Namata was infected with the virus by her husband. When she confronted him, he said it had nothing to do with him and left her with five children to support. Two of them are HIV-positive.

These women are all members of the Mama’s Club, a group that offers psycho-social support to HIV-positive mothers and pregnant women in Uganda.

Twice a month, the women gather in a room at TASO–The AIDS Support Organization–the country’s oldest and largest HIV-AIDS support group, in Kampala. They drink milky tea and brainstorm ways to make money, like raising poultry and selling crafts. They learn about how to care for HIV-positive infants. Those who are pregnant learn about their need to receive antiretroviral drugs during pregnancy and delivery and not breastfeeding past the first three months to prevent passing on the virus to their babies. They share stories of stigma and discrimination. But mostly, they sit and chat. They remind each other that they are not alone.

‘Pathetic Situation’ Forum

"Most of these women are single, widowed or have been chased away from their homes because of their HIV status," said Lydia Mungherera, a doctor who was working in the clinic at TASO in the late 1990s when she realized that a whole host of issues that were not strictly medical faced HIV-positive mothers and pregnant women. "The whole idea was to start a forum for all these pathetic situations."

In 2004, with a few small private donations, Mungherera gathered a handful of TASO clients who were also mothers to start the group.

Two years later, it has 50 members and a waiting list. Mama’s Club accepts infected women who are expecting or have infants up to the age of 3. During these early years, she said, infants are most vulnerable to developing health problems and mothers are just learning how to cope with the dual challenges of having a new infant and being HIV-positive.

With antiretroviral drugs and proper care, the risk of mother-to-child transmission of HIV can be as low as 1 percent. But in developing countries, the number of infants who are born HIV-positive is still unacceptably high, according to a March 2006 World Health Organization report.

According to the report, less than 10 percent of HIV-positive women in developing countries received the drugs that prevent mother-to-child transmission of the virus between 2003 and 2005. As a result, about 1,800 children a day are born with HIV. Each year, over 570,000 children under the age of 15 die of AIDS, most having acquired the virus from their mothers, the report said. It blamed frail health systems in poor countries and inadequate drug supplies, among other factors.

Ignorance and Stigma

Mungherera and members of the Mama’s Club said that ignorance and stigma are also to blame.

In Uganda and elsewhere, many women learn they are infected when they are pregnant. That’s when they will go to a clinic and be encouraged to take a test. Women who test positive under any circumstances are counseled not to have more children and not to engage in unprotected sex. But women say that’s easier said than done.

"In our country, the woman doesn’t have the right to say no to sex or to having children," said Pross Kevin, a 48-year-old member of the Mama’s Club. "The man is the one. If he wants to have sex–protected or not–it is his decision."

In Uganda, as in many African countries, women face huge cultural expectations to bear children. A romantic relationship is traditionally not considered legitimate unless it produces a baby.

Another problem, say club members, is discrimination against HIV-positive pregnant women by health workers. Members of the Mama’s Club went to a local human rights group with testimonies documenting the problems in order to bring them to the attention of the public. They described how nurses and midwives in the delivery ward at Mulago Hospital, Kampala’s major public health facility, had neglected and insulted patients upon learning that they were HIV-positive.

Shunned by Delivery Nurse

One woman said she believed her baby was infected with the virus because nurses refused to attend to her during delivery. Another woman said a nurse asked her "why she had gotten pregnant in the first place." Stories about the issue appeared in the local press. Though they have no hard statistics, Mama’s Club members believe that such instances of discrimination have become rarer since the issue was brought to light.

Recently, representatives from a local women lawyers’ group have visited meetings to educate the women on their legal rights on such issues as marital property and medical treatment in public hospitals. Also, the executive director of TASO, Alex Coutinho, gave a speech about the need for HIV-positive men to be more supportive of their partners and called for a "Tata’s Club."

The Mama’s Club survives on scattered private donations and the proceeds from a charity walk it held last year. Mama Club member Kevin said with or without money, the mothers will keep meeting twice a month.

"At least, if we are together then maybe we can help each other," she said.

Rachel Scheier is a freelance writer based in New York who has been living in Kampala in recent months.

 

For more information:

The AIDS Support Organization (TASO)
www.tasouganda.org

World Health Organization: Mother to Child Transmission of HIV/AIDS
http://www.who.int/hiv/pub/mtct/en/

UNAIDS Program
http://www.unaids.org/en/

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