Jaafar Daud, chairman of the Selangor branch of Pengasih, a drug rehabilitation NGO, commended the government for its support of HIV/AIDS awareness initiatives, but said more needs to be done so that PLHIV can lead normal lives.
Stigma and discrimination
Having detected its first homegrown case in 1986, Malaysia now has almost 70,000 PLHIV.
However, in 2020, a health ministry study found that three out of four Malaysians attached some form of stigma to PLHIV, or discriminated against them.
Jaafar said the discrimination is particularly felt in matters of marriage and employment.
“To get married, we are required to fill out a form confirming our HIV/AIDS status. If we are honest and say we are HIV positive, the officer-in-charge would immediately say the marriage cannot proceed and that both sets of parents must be informed,” said Jaafar.
“Very few people show concern when a PLHIV is hospitalised or homeless. Very few people care.”
That discrimination persists even when a PLHIV dies, he added.
“The people who care do so for the sake of business. They want to act as undertaker because it pays more than when a normal person passes away,” he said.
Azman Daud (not his real name), a former drug addict currently residing at the Pengasih facility, shared his experience when attending the funeral of a friend who was HIV+.
Azman said that certain practices at the funeral were likely to further entrench the negative perception of PLHIV.
“They change into a full (hazmat) suit to bathe the body of the deceased. Anyone who sees it will associate the deceased with some form of illness, like Covid.
“We struggle with our self-esteem as a result of these practices, these gaps in how we are treated,” he said.
Jaafar recounted one incident involving the mistreatment of a resident, a former civil servant, by healthcare workers.
“They hid him away in a ward at the end of a corridor,” he said.
Azman has also faced discrimination at the hands of healthcare workers due to his HIV+ status.
“I had surgery to remove my thyroid. I was second in line on the list drawn up for that day but was the last patient they attended to.
“I know it was due to discrimination because the hospital staff were talking to each other about my illness during the operation. They rushed through my procedure as quickly as they could,” he said.
Government not raising public awareness
Jaafar said the government can reduce the discrimination suffered by PLHIV by raising awareness of HIV/AIDS through regular campaigns.
“Our government has done a lot to reduce the stigma for PLHIV, but they do not have enough programmes.
“Programmes run on World AIDS Day or International AIDS Memorial Day are one-off, so there is no consistent message going out. People easily forget, it has no effect,” he said.
However, Jaafar lauded the government’s efforts to reduce HIV/AIDS transmission between active drug users through lifestyle changes facilitated by substitute therapy and accessible healthcare services.
“We can easily access treatment, testing, counselling and so on. In fact, in every clinic we can access our highly active antiretroviral therapy medication.
‘Living examples’
Jaafar said Pengasih uses the shaking of hands as a strategy to show the limited forms through which AIDS can be transmitted.
“We are living examples that you cannot easily get infected with HIV/AIDS simply by shaking hands.
“So, we shake hands with ministers, with everybody,” said Jaafar.
Pengasih also aims to show the public that PLHIV are not weak, he said.
In fact, PLHIV are capable of achieving more than most, whether it be by climbing Mount Kinabalu or cycling from Perlis to Singapore.
“That shows we are very healthy,” he said.
Azman, an avid gym-goer, said that he wants to show that PLHIV are fit and active. Our HIV status cannot be discerned from our physical appearance, he said.
“PLHIV are not zombies,” he said.
“If I do not tell people I have HIV, they would not know. I am healthy, and even do weightlifting.”