Cover Dr Raja Iskandar is a senior consultant and associate professor of infectious diseases at University of Malaya's Faculty of Medicine
Dr Raja Iskandar is a senior consultant and associate professor of infectious diseases at University of Malaya's Faculty of Medicine
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The president of the Malaysian AIDS Council discusses ongoing efforts to support people living with HIV and the latest available treatments
As a senior consultant and associate professor of infectious diseases in the University of Malaya’s Faculty of Medicine, Dr Raja Iskandar Shah is sought-after for his professional expertise in the HIV field and leverages his position in influencing policy on various scales.
The passionate medical practitioner and Malaysian AIDS Council president is a strong advocate for HIV prevention and treatment. As of end of 2021, an estimated 81,942 people were living with HIV (PLHIV) in Malaysia, with 66 per cent receiving antiretroviral treatment (ART) by December. ART effectively controls the virus, enabling patients to lead full and productive lives. Though there’s no cure for HIV, the availability of potent, well-tolerated antiretroviral medicines has fundamentally transformed its treatment.
In HIV prevention, pre-exposure prophylaxis (PrEP), a pill or shot taken to prevent getting HIV, plays a crucial role in eradicating and minimising the rising rate of HIV infections. However, stigma and limited access still persist. Raja Iskandar says that JomPrEP, a clinic-integrated mobile app was developed to address this, allowing users to discreetly order PrEP medication or HIV self-test kits.
In light of World AIDS Day on December 1, Raja Iskandar discusses ongoing efforts to support people living with HIV, the latest available treatments and the importance of fostering an inclusive society.
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Above Dr Raja Iskandar (Photo by Daniel Adams)
Dr Raja Iskandar (Photo by Daniel Adams)
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First off, what motivated you to take on the role of president of the Malaysian AIDS Council (MAC)?
I have always been motivated by the activism surrounding HIV and the societal changes it has brought about historically. Those of us who work in HIV and infectious diseases become activists by default, as we are in a position where we can be the voices of the communities affected by HIV. Witnessing the strength of collective action and community resilience in the face of adversity has inspired me deeply.
I hold great respect for the work that MAC and its partner organisations have accomplished over the past 30 years, finding a balance between public health concerns, social justice, and the safeguarding of human rights. When the opportunity to lead MAC presented itself—I was vice-president at the time—it felt like the right moment to step up and bring my global and public health [experience], clinical [background] in HIV, and the voices of the key affected communities to the organisation.
Can you discuss the current state of HIV awareness and prevention efforts in our country?
Different generations have varying views on HIV, requiring tailored communication about its risks. While traditional prevention methods like condoms are well-known, awareness of newer prevention approaches, such as HIV PrEP, may be limited. Meanwhile, knowledge of U=U (undetectable equals untransmittable, which means that an HIV-positive person on ART treatment with an undetectable viral load cannot sexually transmit the virus) remains low among the general population and healthcare providers.
In 2020, 41 per cent of new HIV diagnoses in Malaysia had AIDS or baseline CD4 counts below 200. This is influenced by stigma, discrimination, low health literacy, and perceived low infection risk. Unless these are effectively addressed, the occurrence of late presentation will persist. To address this, we need to normalise HIV testing and offer it as an opt-out approach. With the success of Covid self-testing, we should push for more HIV self-testing, which can include digital and non-digital approaches, particularly for individuals who haven’t tested before or do so irregularly.
Can you elaborate more on MAC’s efforts in combating HIV-related stigma and fostering a more inclusive society?
One of our significant initiatives involves advocating for workplace rights protection for individuals with HIV. We also collaborate with media, celebrities and influencers to shape a positive and compassionate narrative around HIV/AIDS. This effort recently reached a milestone when we presented the Red Ribbon Media Awards, recognising media professionals for empathetic reporting on HIV/AIDS.
When addressing HIV, we need to frame it as a health-related, not moralistic issue. We emphasise the importance of involving key affected communities in the media—genuine stories from those who experienced or have overcome stigma and discrimination carry a powerful message, breaking down misconceptions and fostering understanding.
How does the organisation support individuals living with HIV/AIDS?
MAC and our sister organisation, the Malaysian AIDS Foundation (MAF), are engaged in several initiatives to mitigate HIV’s impact on people’s lives. We provide financial aid for second-line antiretroviral medication to individuals who cannot afford it, run a micro-credit scheme for female entrepreneurs living with HIV, and support income-generating projects for communities of former drug users. Our peer support programme, in collaboration with partner organisations, offers emotional and psychosocial aid to individuals recently diagnosed with HIV. We guide them through the initial stages of treatment, which can be overwhelming for many patients, and encourage PLHIV to report their experiences of stigma and discrimination to MAC.
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What are the latest treatments available and are they accessible?
HIV is treated with a combination of 2-3 drugs called combination antiretroviral therapy (c-ART), which suppresses the virus, boosts the immune system, and reduces transmission risk. Thanks to in-depth research, HIV treatment has evolved and gotten better over time. We can now treat HIV with a single daily oral pill with minimal side effects. Long-acting antiretroviral treatment is emerging, with two injectable HIV drugs given every two months as an alternative to daily pills. While there’s no cure yet, HIV treatment effectively prevents HIV-associated morbidity and mortality. The life expectancy of PLHIV in care and on ART approximates that of an HIV-negative person.
In Malaysia, the government has been offering generic forms of first-line ART for free in public hospitals since 2006. However, many people still can’t access the most effective and side effect-friendly medications due to restrictions on drug licensing, keeping the prices of these drugs unreasonably high. Addressing this issue is a key focus for us at MAC.
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Elizabeth Soong is the managing editor of Malaysia Tatler. She loves a good laugh, but is serious when it comes to work, and gets a high from dancing, cats purring, plus enjoys musicals or binge-watching a good TV series. Continually inspired by the people she meets, edits and writes about, you're welcome to see what she's up to on her Instagram @lizsoong.
