UNSUNG HEROES BEHIND MALAYSIA'S HIV/AIDS FIGHT

When most people are winding down at home after a nine-hour workday, Muhammad Fitri Abu Bakar is just beginning another kind of mission. As dusk falls, he walks through narrow alleyways behind buildings or low-cost flats — places often overlooked — to fulfil a duty that rarely ends with office hours.

He doesn’t complain, even when drenched in the rain. What matters most to him is that there are lives to be saved.

“No, I’m not a doctor. I’m a Community Health Worker — and my ‘patients’ are people living with HIV/AIDS,” said the soft-spoken man in his early 30s when met by Bernama recently.

The truth is, the existence of Community Health Workers (CHWs) like Muhammad Fitri remains largely unknown to the public. They work with people at the margins of society — many living with HIV/AIDS in silence, away from the gaze and stigma of the community.

Muhammad Fitri is one of seven CHWs serving under the Kuala Lumpur AIDS Support Services Society (KLASS). Their responsibilities include conducting outreach programmes and distributing medications such as Pre-Exposure Prophylaxis (PrEP) — an antiretroviral drug taken by HIV-negative individuals at high risk — and Antiretroviral Therapy (ART), a daily oral treatment for HIV patients.

ALWAYS ON CALL

A graduate in engineering technology from Universiti Teknologi Malaysia, Muhammad Fitri joined KLASS soon after completing his studies, driven by a long-held passion for healthcare and a desire to help others.

 “We also have a duty roster and official working hours - nine hours a day - but there are times when our services are needed by clients (people living with HIV/AIDS) after working hours, and we have to go out into the field to meet them,” he said, adding that patients must adhere to a strict treatment regimen and cannot afford any interruption in their medication supply to control the amount of the virus in their bodies.

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(Human Immunodeficiency Virus, or HIV, attacks the body’s immune system and weakens its ability to fight infections. If left untreated, it can develop into Acquired Immune Deficiency Syndrome, or AIDS — the most advanced stage of the disease.)

The latest data from Malaysia’s Ministry of Health (MOH) shows 3,185 new HIV cases recorded in 2024, nearly half the number reported the previous year. Among these, young men aged 20 to 30 account   for three-quarters of cases — and 90 per cent were infected through same-sex transmission.

Reaching this group, however, is not easy. Many are reluctant to seek help, fearing exposure or discrimination.

“That’s where we come in — building trust so they feel safe enough to reach out,” said Muhammad Fitri. “Even though government clinics are always open to them, many still hesitate to go, afraid of being judged or recognised.”

Because of that, CHWs like him must take the initiative — conducting outreach in identified hotspots, universities, residential areas, and increasingly through social media, which has become a powerful tool to connect with at-risk communities.

ALMOST PUNCHED

Working with this community demands extraordinary emotional control — because some newly diagnosed individuals react with fear, anger, or denial.

“I was once almost punched by a client who became overwhelmed after learning he was HIV-positive. Luckily, I managed to calm him down,” Muhammad Fitri recalled.

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That incident, he said, taught him the true meaning of empathy.

According to him, many still associate HIV with a death sentence, causing those involved in high-risk activities to avoid testing altogether.

“They think that being HIV-positive means the end of life. But it’s not. HIV is no longer a death sentence. With treatment — and the right emotional support — they can lead normal, fulfilling lives,” he shared.

He added that the role of CHWs is often misunderstood as purely voluntary. In reality, CHWs receive a modest fixed salary through joint funding from The Global Fund and the MOH — a recognition of their vital contribution on the ground.

Another CHW, Lokman Hakim Fadzil, 27, shared a similar experience. He once accompanied a client who broke down in tears after receiving a positive HIV result. Through continued emotional support and counselling, the client eventually found strength to rebuild his life.

“Today, he’s healthy, in a relationship, and getting married soon,” Lokman said with a smile, noting that modern treatment can now suppress the HIV virus to undetectable levels — meaning it can neither harm the patient’s health nor be transmitted to others.

A BEACON OF HOPE FOR THE COMMUNITY

While CHWs form the backbone of Malaysia’s efforts to combat HIV/AIDS — often venturing deep into marginalised communities — they do so with limited resources and under immense emotional and mental strain.

According to KLASS President Andrew Tan, technical training alone isn’t enough. These workers also need strong emotional resilience to handle sensitive situations — particularly when delivering positive HIV test results.

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“In reality, many clients rely heavily on CHWs for emotional support — not for days or weeks, but months, even years. They need someone who understands them without judgment. Over time, this dependency can lead to burnout among the workers,” he explained.

Andrew described the situation as urgent. CHWs are not just information providers or field testers; they carry the weight of human hope — often from individuals rejected by their families or paralysed by fear of social discrimination. Yet, questions remain about fair compensation for their tireless service.

“Some of them may not have formal qualifications, but their field knowledge and lived experience are invaluable. Not everyone has the courage to work within these marginal communities,” he said, stressing the need for a structured professional recognition system for CHWs.

Encouragingly, Andrew noted growing institutional support, especially from Medical Assistants (MAs), nurses, and District Health Officers, who increasingly recognise CHWs as vital partners in creating a more inclusive public health ecosystem.

“They understand the language of the community, the issues they face, and the realities that bind them. They’re not just workers — they’re ambassadors of hope,” he added.

He also called for greater access to formal education pathways for those wishing to further their studies in counselling or psychosocial support. Field experience, he said, should be recognised academically — perhaps through special certification or professional training programmes.

“Just imagine the impact if we could develop more CHWs who are not only skilled in practice but also formally certified to advance their careers within the public health sector,” he said.

CLINIC AND COMMUNITY

As key stakeholders in Malaysia’s national HIV response, the Malaysian AIDS Foundation (MAF) and the Malaysian AIDS Council (MAC) continue to play a strategic role in empowering CHWs as agents of social change — and in recognising their immense contributions.

According to MAC Deputy President Dr. Nur Afiqah Mohd Salleh, CHWs serve as “the gatekeepers to a fairer, more compassionate healthcare system,” especially for groups historically marginalised from mainstream services.

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She cited the launch of the Differentiated HIV Services for Key Populations (DHSKP) model in 2019 — a joint initiative by the MOH and MAC — which expanded the CHW role significantly. Today, they are not only trained to conduct HIV screenings but also serve as counsellors, referral agents for antiretroviral therapy (ART) — the daily oral treatment for HIV — and peer educators on sexual health, all delivered with empathy and without discrimination.

The work of CHWs received formal recognition from former Health Minister Khairy Jamaluddin during the launch of the KK 2.0 Initiative at Klinik Kesihatan Pandamaran, Klang, in 2022. This initiative — a smart partnership model between government and NGOs (known as GONGO) — builds upon the first KK Model Project introduced at Klinik Kesihatan Kuala Sungai Baru, Melaka, in 2015, aimed at strengthening Malaysia’s Harm Reduction Programme.

At its core, DHSKP is a central module within the KK Model 2.0 Initiative, designed around the concept of a ‘community-friendly clinic.’ It integrates CHWs and civil society organisations directly into the public healthcare system, focusing on key populations at risk — such as men who have sex with men (MSM) and transgender women — to ensure more inclusive, responsive HIV services.

Meanwhile, KK 2.0 serves as the overarching framework combining clinical, community, and NGO approaches to strengthen public health outreach. It covers HIV screening, counselling, treatment, and prevention, including the PrEP programme — an antiretroviral drug taken by HIV-negative individuals at high risk. Through this initiative, CHWs receive field incentives and micro-grants to offset logistical costs such as travel and the distribution of self-test kits.

“The impact has been remarkable,” said Dr. Nur Afiqah. “Among injecting drug users, HIV infection rates have dropped from over 22 per cent in 2009 to below 8 per cent in recent years. The Harm Reduction Programme — supported by CHWs through safe needle exchanges and methadone therapy — has saved thousands of lives.”

Today, MAF and MAC are shifting their focus to address the rise of sexually transmitted HIV infections, particularly among MSM and transgender women — where the role of CHWs once again becomes indispensable.

Yet, major challenges remain. Nearly half of people living with HIV in Malaysia report having faced discrimination — being denied proper treatment,  subjected to prejudice, or intimidated under punitive laws targeting sex workers and drug users. These legal and social barriers often deter them from seeking help.

In response, MAF and MAC have jointly expanded efforts to provide legal aid, safe community centres, and sensitivity training for healthcare providers, employers, and service personnel. They also work closely with mainstream and digital media to reshape public narratives around HIV, making them more inclusive and grounded in human rights.

EXPANDING ACCESS

To ensure that healthcare reaches beyond urban centres, Dr. Nur Afiqah said MAF has launched the Sabah and Sarawak Health Access Programme (SHAPE) to serve patients in remote and rural areas of East Malaysia.

Starting in Kuching, SHAPE has since expanded to Miri and will soon reach Bintulu. The initiative provides travel subsidies, free testing, and temporary accommodation at transit centres such as Teratak Kasih Tok Nan (TKTN) in Kuching — another example of a human-centred approach that restores dignity to care.

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In Sabah, the programme has grown from its initial base in Sandakan to Kota Kinabalu, marking a crucial step in ensuring that geography is no longer a barrier to treatment or hope.

Digital platforms like ProtectNow.my and TestNow.com.my also serve as discreet bridges between users and healthcare services. Those afraid to come forward can order anonymous self-test kits, chat with counsellors, or connect with nearby CHWs online.

“Many are not afraid of the disease itself — they’re afraid of society’s judgment,” said Dr. Nur Afiqah. “That’s why digital platforms like these offer a safe first step for people to start caring about their own health.”

Despite the hurdles, both MAC and MAF remain confident in the strength of community-driven partnerships. With grassroots networks, inter-sector collaboration, and a people-first approach, the vision of ending HIV/AIDS as a public health threat by 2030 no longer seems impossible.

KEEPING CLOSE TO THE COMMUNITY

Meanwhile, a MOH source told Bernama that the PrEP programme has become one of Malaysia’s most significant HIV prevention strategies. Introduced in phases since 2023, it now benefits over 9,000 high-risk individuals across 35 government health clinics nationwide — excluding Labuan.

Although all government clinics provide basic HIV screening, PrEP-designated clinics offer a comprehensive service package that includes sexually transmitted infection (STI) screening, counselling sessions, and sexual and reproductive health education. The programme is implemented in collaboration with MAC and funded by The Global Fund, with the long-term goal of making PrEP freely available at all public health clinics.

“This programme is not just about medicine. It’s about touching lives, rebuilding confidence, and giving a voice to those who have long been silenced,” the source said.

So far, HIV infection rates among PrEP users remain below 0.2 per cent, with most new cases arising from poor adherence to medication.

The source also praised the dedication of CHWs and civil society organisations in ensuring that information, treatment, and care reach every layer of society.

“Through community strength, genuine compassion, and the courage to care, we’re not just breaking chains of infection — we’re rekindling hope. This fight doesn’t belong to one agency alone. It belongs to all of us, as a society that refuses to decide who deserves health and who doesn’t,” the source added.