HIV-positive Malaysian woman leads fight against stigma

by Thin Lei Win | @thinink | Thomson Reuters Foundation
Tuesday, 28 May 2013 10:59 GMT

A shelter founded by a woman living with HIV gives much-needed physical and emotional support to HIV-positive Malaysian women and girls, who face hostile family members and have difficulty finding jobs

KUALA LUMPUR (Thomson Reuters Foundation) - Norlela Mokhtar, a formidable woman who has been living with HIV for 13 years,  is a staunch  supporter of women who have been infected as a result of their partner’s high-risk behaviour but are ignored by governments and prevention programmes.

“The authorities would go to places where men are injecting drugs (with HIV) programmes, but they don’t go to the houses where there are wives who are infected,” said Mokhtar, 49, a former government worker.  “I’m one of them.”

After being infected by her second husband, a drug user, Mokhtar did stints at the Malaysian AIDS Council and Malaysian Positive Network before establishing Persatuan Wahidayah Malaysia (Pewahim), a shelter for women living with HIV.

Nearly 30 women and babies have passed through Pewahim’s doors since it  opened a year ago and many more come regularly to take part in activities ranging from information-sharing to learning how to sew.

They bring similar tales: infected by husbands who use drugs, and abandoned by families who don’t know how to take care of people living with HIV, are concerned they too will be infected, and fear the neighbours’ judgment.

Some were very ill when they came to the shelter, with a low CD4 count - a measure of the white blood cells that play a key role in the body’s immune system - and urgently needing life-saving antiretroviral treatment (ART).

They stay until their CD4 count improves or, in the case of pregnant women, until they have given birth and their babies have been tested at least twice. The centre’s walls are filled with photographs of women who recovered and are leading independent lives - and of some who were reconciled with their families with Mokhtar’s help.


According to UNAIDS, the United Nations agency on HIV/AIDS, the proportion of women infected by the disease in Malaysia has risen steeply over the past two decades.

HIV/AIDS used to be a predominantly male epidemic, but the ratio of female to male victims has shifted significantly, from one women to 85 men in 1990 to 1:10 in 2000 and 1:4 in 2011.

Women still make up only 11 percent - about 8,400 - of adults living with HIV in Malaysia, but the infection rate is rising among women while showing a significant decline in men, UNAIDS said.

In 2011, women and girls constituted around 21 percent of reported new HIV cases compared with 5 percent 10 years ago – and 40 percent of the new cases were housewives. Also, 87 percent of HIV infections among women occur through heterosexual transmission.

This trend is not confined to Malaysia, said Jan Beagle, deputy executive director of UNAIDS, who visited the shelter on Monday on the eve of Women Deliver, the largest global conference focusing on the health and well-being of women and girls, taking place from May 28 to 30 in Kuala Lumpur.

It is also seen in eastern Europe, Central Asia, the Middle East and North Africa where infections are increasing among wives and girlfriends of men who also frequent sex workers, use drugs, and have sex with men.

But these women receive little attention and few resources, Beagle said.


“The numbers may be small but HIV is still the leading cause of death for women of reproductive age worldwide, a major cause of maternal mortality, and a major co-factor with TB,” she said.

“It’s all linked ultimately to the economic and social empowerment of women,” Beagle added.

Mokhtar agrees, saying that most of the women she has helped “come from a social-economic background where they cannot say ‘no’ to a husband who doesn’t want to use condoms.”

Malaysia is the fifth largest producer of condoms in the world, but has a taboo over condom use because of the view that it promotes promiscuous sexual behaviour that persists, hampering the fight against AIDS.

Selective religious beliefs in the majority-Muslim country also play a part.

“In our religion, there’s a saying, ‘The angel will not bless you if you say ‘no’ to the husband’ and that’s been used by men to get their wives to obey them,” Mokhtar said. “But our religion also says husbands must take care of their wives, yet that part is not spoken of.”

Private companies’ policy of requiring medical check-ups for those applying for jobs poses a big challenge to HIV-positive women rebuilding their lives, the women at the shelter said.

Pewahim currently has two paid staff including Mokhtar and a shoe-string budget of 100,000 Ringgit ($33,000). Funds from friends, religious leaders, and cosmetics firm MAC keep the shelter running. MAC equipped an empty house with dining tables and other furniture and provided sewing machines so the women could receive skills training.

Mokhtar wants the shelter to be not only life-changing but also sustainable. So there are big plans for next year, including a fund-raising drive through sales of  food, handmade jewellery and a calendar of women the shelter has helped.

“We’re trying to show that women with HIV look normal and fight the perception that the community cannot eat what we eat,” said Mokhtar.

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