Dark clouds loom heavily over the little alcove to the right of the main cemetery in Gombak, where rows of once-white stones somberly mark these mostly unremarkable graves.
A few gravestones are worse for wear and in danger of teetering over. Some graves are barely noticeable save for their headstones.
Most of these graves are the final resting places of Malaysia’s earliest AIDS patients, according to “Along”, the 44-year-old guide from PT Foundation (PTF), an HIV/AIDS community health group. AIDS is the late stage of HIV (human immunodeficiency virus) infection when the body’s immune system is badly damaged due to the virus.
“During those days, whenever PTF receives HIV cases from HKL (Hospital Kuala Lumpur) … (and) if our team was not able to meet their family members or no one came to claim (their bodies), we (would bury them here),” he told Bernama.
Dozens of these stones pepper the landscape, the forgotten and the discarded testament to the awful early days of HIV/AIDS when few knew what it was and how it was transmitted.
Experts said most called it “the gay disease” then, not realising that it spread via blood and other bodily fluids, not just through sexual transmission, and that everyone was vulnerable.
For about two decades, the disease spread like wildfire, mostly through intravenous drug use. Despite awareness and abstinence campaigns, the trend was worsening until advocates, health authorities and policymakers bucked tradition in 2005 and gave drug users clean needles and a second chance.
HOW IT WAS
Malaysia recorded its first HIV case in 1986. Rather than continuing to spread through sexual activity or blood transfusion, as were among the most common methods in other countries in the early days, the most common method in Malaysia by far was via drug injections at that time.
Three years after the first case, injecting drug use accounted for 76 percent of the 750 HIV cases reported. By 2002, intravenous drug use contributed to 74.2 percent of all HIV cases reported in Malaysia.
“Because it's rapid with injecting drugs, it is the most efficient way to transmit HIV. Because blood from one person's vein goes directly into another person's vein when they share the needles,” said Palani Narayanan, director of the Drug Policy Programme at the Malaysian AIDS Council.
He was one of the many health advocates and activists working on HIV/AIDS prevention and outreach in the years since 1986, describing to Bernama the existence of drug dens in the heart of Kuala Lumpur, along with sex workers at that time.
The new incurable disease hit all the taboos in Malaysian society as it was linked to drug use and sex. Being in the drug trafficking corridor of Southeast Asia, Malaysia’s laws pertaining to drug use were rigid. Harm reduction policies were non-existent and the mindset was to criminalise drug use with an abstinence-or-nothing attitude.
Activists would pass pamphlets on HIV/AIDS as well as condoms to sex workers and anyone in the area, but there was little they could do about the driving source of the HIV epidemic then: dirty, contaminated needles.
They were hesitant to give out clean syringe needles as that might be considered an offence under the Dangerous Drugs Act, which prohibits administering drugs to a third party. That did not stop advocates from calling for effective harm reduction policies, but they were mostly met with objections and accusations of enabling drug addicts.
Hands tied, they tried to teach drug users how to sanitise their syringes and needles with water and bleach instead, said PTF acting chief operations officer Raymond Tai.
“You just push up the syringe and put it in and squirt it out. Then you do that repeatedly. Two times. But that was not the most practical thing to do when you are on the street, you know,” he said in his office at the Community Healthcare Clinic in Sentul here.
As a result, cases kept increasing. Many were left to die on the streets, at which point PTF would get the call to take them to the hospital.
“In a few cases as well, the people that contacted our guys would come and they would say, this man is (lying) unconscious in the back lane. And when we get there, the person is already died,” he added.
Tai remembered the time with grief, telling Bernama he had lost many friends to the disease.
By September 2004, a year before the needle syringe exchange programme (NSEP) became official, the number of HIV cases had gone up to 61,486, with 8,955 AIDS cases. The number of deaths due to AIDS then was 6,665. Worse, HIV cases via sexual transmission were also on the rise, with more women getting the virus from their partners.
In a 2005 editorial in the ‘Medical Journal of Malaysia’, Malaysian AIDS Foundation chairman Prof Datuk Dr Adeeba Kamarulzaman wrote that a survey of more than 6,000 inmates from 26 ‘Pusat Serenti’ (Rehabilitation Centres) across the country found more than half, including those who were aware of their HIV status, admitted to having sex with partners other than their spouse or with commercial sex workers.
She noted the rate of condom use among respondents was “very low”.
TURNING POINT
World health experts credit the NSEP as the turning point in the HIV/AIDS trajectory in the nation, along with the methadone programme. But implementation of such harm reduction policies was very much up in the air until the United Nation’s assessment of Malaysia’s progress on Millennium Development Goals came out in 2005.
Palani said the then Prime Minister Tun Abdullah Ahmad Badawi and Health Minister Tan Sri Dr Chua Soi Lek realised Malaysia was lagging in managing HIV/AIDS. Managing infectious diseases was an important marker “because the rapidity with which they can spread, their multidimensional impact and the challenges they pose to prevention and treatment” may undermine development.
“This was the only Millennium Development Goal that we were not reaching. And to Pak Lah (Abdullah Ahmad Badawi) and Dr Choi Soi Lek's credit, they decided that … we must do harm reduction to tackle HIV programme, HIV infections in Malaysia,” he said.
With the help of officials from the Ministry of Health and Malaysian AIDS Council, and Dr Adeeba and others, Palani designed NSEP to cut down on HIV infection rates. The methadone maintenance programme was also introduced to help heroin users manage and control their addiction.
What came out was a policy that Palani said could serve as an example to other Muslim-majority countries.
PTF’s Tai said the methadone programme complemented the course correction.
“For first-time drug users, they were able to stay alert and do normal (things) (and) be productive. And as a result of that, they were able to get jobs. No matter what jobs, they got a job and they were able to sustain and support themselves. And of course that led to a better life, better hygiene, better nutrition. So all of that was the turning point,” he said.
Even then, there were protests, which delayed the implementation of NSEP by a year. The Malaysian AIDS Council and the government recruited Islamic scholars to educate the masses on HIV/AIDS and the importance of prevention in Islam.
By 2010, the Ministry of Health reported that NSEP had decreased the average number of new HIV cases per day, from 17 cases in 2005 to 10 cases in 2009. The percentage of new HIV cases in 2008 decreased to 57 percent, compared to 70 percent in 2005 before the implementation of NSEP.
The following years came with more improvements. HIV/AIDS treatments, such as antiretroviral therapies (ART) and pre-exposure prophylaxis (PReP) medicines, become cheaper and more accessible.
At the Red Ribbon Gala Dinner last Saturday to commemorate World AIDS Day, Health Minister Datuk Seri Dzulkefly Ahmad said HIV cases among intravenous drug users have reduced dramatically from 4,038 in 2005 to 87 in 2023. He also said the estimated population of people who inject drugs has gone down by 65 percent, from 170,000 in 2009 to 60,000 in 2022.
Thanks to NSEP and methadone, intravenous drug use is no longer the primary cause of HIV/AIDS in Malaysia. Sexual transmission is now the bigger cause at 96 percent of cases as of 2021, compared to intravenous drug users at three percent. The Malaysian AIDS Council expects the next phase of the epidemic to be concentrated among people who engage in risky behaviours, such as sex workers and men who have sex with men (MSM), possibly driven by amphetamine substances.
Which brings to a whole new complication for Malaysia.
CAN AIDS END IN MALAYSIA?
Malaysia aims to end AIDS by 2030, with 95 percent of key populations tested for HIV and knowing their results, 95 percent of people with diagnosed HIV+ receiving ART, and 95 percent of people on ART achieving viral suppression.
But given the latest figures, it is unlikely to meet such lofty goals.
The country had already missed its 2020 targets of 90-90-90. As of 2022, 81 percent of people who live with HIV know their status, 68 percent of people who live with HIV and know their status are receiving ART and 87 percent of people on ART are virally suppressed.
Experts cite the high incidence of stigma – the kind that causes one to disown or abandon a family member who died of AIDS – deeply-held taboos against sex and drugs, and lack of awareness about HIV/AIDS among Malaysians as barriers. Many of the people who would most benefit from prevention and intervention, such as MSM, transgenders and sex workers, have gone underground for fear of being exposed, while others are in denial or unaware of the risks.
Tai warned Malaysia is heading for a reckoning, saying that in order to tackle the disease properly the country needs to deal with those taboo topics head-on.
“One of the biggest challenges to this day is that WHO (World Health Organisation) and UNAIDS always recommend that the first place to start in any HIV campaign (is) to create an enabling environment. Because without (an) enabling environment, you cannot do all the interventions that you want to do,” he said.
But not all is bleak.
He said technology in the form of the Internet and social media has become a “leveler” and an agent of change, but warned that it could also set back the HIV/AIDS fight.
“All of them are a double-edged sword,” he said.
NOTE: This is the first of a two-part article on Malaysia’s response to HIV/AIDS, and how technology and other interventions may help Malaysia reach its goal of ending AIDS by 2030.
