Adeeba Kamarulzaman: Fighting Diseases, Addictions and Social Biases

By Rachel Yeoh

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THE THIRD Dr. Wu Lien-Teh Society Award for Leadership in Public Health was awarded this year to Adeeba Kamarulzaman, the Pro Vice-Chancellor and President (Malaysia) of Monash University Malaysia.

Adeeba founded the Infectious Diseases Unit and the Centre of Excellence for Research in AIDS and was Dean of Universiti Malaya’s Faculty of Medicine (2011-2019). The infectious diseases expert was also the President of the Malaysian AIDS Council (2006-2010), and now chairs the Malaysian AIDS Foundation. Internationally, she is Vice-Chair of the WHO Science Council and also a Commissioner for the Global Commission on Drug Policy.

Penang Monthly sat down with Adeeba, right after her flight from Melbourne and just before receiving her award, to chat about her professional journey into infectious diseases, and particularly on her advocacy in HIV/AIDS matters.

Rachel Yeoh: You have been showered with many accolades throughout your career; let’s discuss your earliest memories on your path towards becoming an infectious disease specialist.

Adeeba Kamarulzaman: In terms of doing medicine as a whole, I wasn’t one of those people who knew it what they wanted to do. I don’t come from a medical family. But having said that, two of my brothers are doctors and they both married doctors and one of my sisters married a doctor. So among my immediate siblings and in-laws, we have a lot of doctors, but not before this generation, and sadly not after either; only one nephew and one niece are pursuing medicine.

But what happened was, I guess I did quite well at school, and was sent to Australia on a GPA scholarship immediately after SPM and got the grades to do medicine. It was, in a sense, a process of elimination: I knew what I didn’t want to do—I didn’t want to do engineering. It was a toss-up between law and medicine, and I thought, “Okay, I’ll do medicine!”

I was in my fourth year of medicine when HIV/AIDS hit the news. In fact, I was taught by an immunologist who, sadly, passed away from HIV/AIDS. 

The hospital I worked in, the Alfred Hospital at Monash Medical Centre, paid a lot of attention to this, and therefore received a lot of patients. And I guess I was inspired by the people I worked with.

Also, in order to do infectious diseases, you have to train in internal medicine and I did that. It was then that I kind of decided infectious diseases was for me. I initially wanted to be a cardiologist but quickly changed my mind. In the late 80s, early 90s, I was with a hospital called the Fairfield Hospital in Melbourne, and looked after patients with all kinds of diseases including patients with polio who were in the iron lung.

RY: You thought about being a cardiologist, but was there any incident that made you decide against it?

AK: I called it my epiphany. I also worked with really, really fantastic cardiologists, some of whom have just retired or are still working at Monash Medical Centre. And the nurses in the cardiology ward at Prince Henry Hospital, another hospital that I trained in, were just very inspiring, very, very smart and very capable. That was why I initially thought I wanted to do cardiology… until I kind of decided it’s very one-dimensional—the diseases were limited, it’s very biomedical. 

I guess I leaned towards the more social side of medicine. I didn’t know it at the time, but what I really appreciated was the broader aspect of HIV/AIDS. We had, obviously, in Australia, gay men who were affected, transgenders; very few people who use drugs. And one story that I’ve told several times is about this transgender woman from Brunei, and essentially, I was her only friend if you like, because we were both Malay-Muslim. When she came out as a trans woman, the Malay diaspora kind of shunned her and of course, when she had HIV/AIDS, even more so. I was about the only friend/visitor/doctor that she had, except for Imam Fahmi from the nearby Preston Mosque. The sad part about her was, you know, she was clearly dying and I was coming back to KL for a holiday. Whilst I was still in Melbourne, she asked me to ring up her parents and her family in Brunei to tell them that she was very ill and all that and they just basically didn’t want to know about it. And then I arrived back in KL and called them again and that time, they said, “Okay, we’re on our way to Melbourne.” But by the time they transited in Singapore, she had passed away—but it was so sad. She died and I wasn’t even there.

Until today, the social aspect is what keeps me going.

RY: I do not know anyone who has HIV/AIDS. Is it because nobody admits to it as it is such a “tabooed illness” or is there a drop in infections? Or a lack of awareness?

AK: You don’t know anyone?

RY: No, actually.

AK: I’d like to think that there is a bit more knowledge and less stigmatisation, but you’re absolutely right. And I think what may be also happening is that we’ve all been caught up with you know, other diseases, Covid-19, dengue… and the effort put towards general awareness has definitely… gone away.

In the early days, we used to publicise it—general awareness programmes, education campaigns, etc. People in their 40s and above would have been through these campaigns from the 1990s and early 2000s. Having said that, the numbers are coming down in certain groups.

In Malaysia, we have what’s called a “concentrated epidemic”, in the parlance of the medical world. So men who have sex with men, transgenders, people who use drugs and, to some extent, sex workers. So, the Ministry of Health (MOH) and the Malaysian AIDS Foundation are doing more targeted programmes, because we know that this is where infections are still occurring. So, with the limited resources that we have, we create targeted programmes to bring people in to get tested early; tests that you can order online, through prevention programmes known as PrEP, the Pre-exposure Prophylaxis. Also reaching out to them through social media is useful; evidence has shown that in an epidemic, where a disease is much more concentrated in key groups, it’s better that we put our effort and limited resources there rather than doing billboards and all that, which doesn’t really work in terms of generating awareness. You want people who are at higher risk to come forward and get tested because treatment not only saves their lives, it prevents their immune system from deteriorating.

But also if we can keep the presence of virus down to what we call “undetectable”, they will not pass it on to their partners, to their babies. In the case of sexual transmission, if it’s consistently at an undetectable viral level, you can have sex without condoms and still not transmit it.

Hence, you might have heard of this 95-95-95 campaign to get to the end of AIDS, which is: that 95% of people who are living with HIV have been tested. Of those who test positive, 95% should be on treatment, and of those who are on treatment, 95% should have an undetectable viral load. Malaysia is not doing so great, in terms of achieving the 95-95-95 goals.

There are about 10 countries that either have achieved it or have surpassed it. I kid you not, most of these countries are very poor countries. They’re getting a lot of support from global funds and the US and so forth. Even countries like Eswatini, formerly Swaziland, where there were concerns that the whole country might be obliterated by HIV/AIDS, have achieved the goal. 

RY: What is hindering Malaysia?

AK: Stigma at all levels. Stigma at the personal level, what we call internalised stigma, is a very powerful thing. You may be afraid to come forward because you are taking drugs and are afraid someone is going to arrest you, or you’re a sex worker, and people are going to ask how you got HIV. You know, they have so many other concerns around them that HIV doesn’t become a priority.

Australia is well on its way to eliminating or reaching the elimination of HIV, but what they’re seeing is pockets of increased infection among migrants to Australia, from Southeast Asia and others. And one of the main drivers is, again, the internalised stigma that they’ve lived with all their lives. And even in a society as relatively open, accepting and tolerant as Australia, that stigma to come forward, that fear is still… very entrenched.

Hence, the importance of us providing other avenues so they don’t have to come into contact with a healthcare professional until later. That’s why we see that a significant proportion of patients who are diagnosed for the first time with HIV are already advanced in the disease. Either they had been too scared to be tested in the first place, or they tested themselves but were too afraid to come forward.

Colleagues and I have looked into this and, yeah, that is to me, the Achilles heel for us reaching our goal of ending AIDS and—to be fair, it’s not just in Southeast Asia, it’s everywhere.

RY: How is it possible to address this stigma?

AK: One is, of course, continuing education. And the other is policy, right? Some countries have laws against discrimination, and that has been identified as key if we are really serious about ending AIDS.

I think there are many interventions and it has to be multipronged—at the most basic level, it is education.

RY: What have been the most significant game changers when it comes to either advocating for awareness or treatments you have seen so far when it comes to HIV/AIDS?

AK: Without a doubt, both prevention and treatment. Let’s talk about prevention first.

We know that things like condoms work. We know that the Needle and Syringe Programme[1] works. I guess for me, for Malaysia, that was a game changer, the fact that the government allowed us to implement it to such an extent that now it is part and parcel of the MOH programme; that has seen a reduction in numbers. It led to people discussing openly about the possibility of decriminalising drug use, etc. I think that has been quite a journey—frustrating, but we’re inching forward.

Image credit: David ST Loh.

RY: Let’s go into drug policies. Could you briefly outline the history of drug policies in Malaysia and the current approach towards decriminalisation? Also, what areas of improvement do you want to see after decriminalisation?

AK: Yeah, the journey has been long because it’s very complex. The negativity towards drug use is very entrenched in society, but it’s a natural progression for me, seeing the impact of the Needle and Syringe Programme in particular.

Also, I had a big research programme in Kajang recently—having worked there for more than 10 years. I have fantastic colleagues from Malaysia and also colleagues from Yale—and seeing the futility of what we’re doing. It started off with the first grant we received from NIH (National Institutes of Health). At the time we wanted to scale up the methadone treatment in prison.

Because of the large number of people who come in daily on charges related to drugs in Kajang, you know, like 100 to 200 people coming in a day. And the majority— not all of course, some are in for immigration charges—but overall, around 60% are in prison for personal, nonviolent drug use; Section 15, Section 12 and Section 39C. We had people who came to me and said we really needed to advocate to the government and Dr. Zul, the current Health Minister. Already during his first term as Health Minister, he was very open to it. After many engagements with MPs and Ministers—current, past and present—we are getting support from the likes of YB Azalina, the Law Minister; she championed the abolishment of the mandatory death sentence, which is very much connected to the drug policy reform as well. YB Ramkarpal, when he was her deputy, was also very supportive and went to see the Portugal model. However, things get complicated because there are so many laws involved.

There is a lot to be done. First of all, just educating the public on the complexities of drug use is no simple matter. It’s not about weak morals. It’s family breakdown, it’s poverty, it’s boredom, it’s hopelessness, it’s mixing genetics and other kinds of environmental pressures. It could happen to anyone.

The second aspect is also to get a general understanding that is—I keep going back to the word—“complex”. They are many types of drugs—from the simplest which is cannabis, all the way to new synthetic drugs like fentanyl. What actually happens to an individual who uses this drug is actually quite different. 

You also need to understand the different ways to intervene, and how it is not so simple to come off drugs. By just putting them in prison hoping that they will get better—that doesn’t work! You’re actually making things worse. I mean, what treatment is available to them by locking them up in prison? You’re not channelling them into treatments or interventions that work, you’re putting them into an environment that actually makes things worse because (a) the prison officers are not trained to deal with addiction, (b) someone who’s in there for softer drugs will be exposed to a whole load of people who are using hard drugs, who are trafficking, etc. As soon as they leave prison, there’s a whole community waiting for them to reconnect.

We had 100 people enrolled into Harapan One, our first clinical trial for methadone prerelease. And we know that if our research assistants didn’t take them from the day they are released from prison back to their homes or halfway homes or whatever, they are going to be taken by traffickers. That is because these traffickers understand that they are vulnerable, right? The addicts are going to be wanting drugs as they are not completely “clean”—they don’t have a roof over their head, they don’t have a job, they don’t have money. So where do they go?

I am so convinced that what we’re doing is just madness. It’s just madness. And it’s costing millions and millions every day, doing this in hopes that they will get better.

Then, there is also the interruption of the family unit. Let’s say a father of two, with children who are five and 10, is put into prison. You now have two young children without a father figure. However bad he may be, when you don’t have someone in a household who can earn a living, it actually makes things worse.

Recently, we formalised a group in the form of a secretariat funded by the Global Fund to work in a more structured and systematic manner. What we want to do is to work concurrently with the media—in an awareness campaign, reaching out to the general population, to policymakers, etc.

I have enough humility to understand that the health sector is not ready to undertake this, but the second thing is that a whole heap of training needs to be done—counselling, addiction treatment, you know, and to understand the different types of drugs and the impact and the intervention that’s needed. Then training the judiciary, the magistrates, the police… That’s a huge parcel of work.

The third is to actually look at the laws one by one to see which does or does not need to be changed.

A couple of weeks ago, Professor Allison Ritter, a colleague of mine from UNSW (University of New South Wales), who has been doing a lot of evidence-based work, including looking at a very sticky area called threshold, which is defining if someone is a drug user or trafficker. If they are found with a quantum of drugs on them, is it for personal use or is it for sale? We actually have this in our laws. Every country that has moved towards decriminalisation decides on this threshold differently. So, we had Allison walk through with us what to do about this threshold. Every time we speak to the police or policymakers, it is hard to decide if someone is a drug user or not. Portugal, for example, one of the earliest countries to decriminalise drugs, quantifies that if you have had less than 10 days of use, you shouldn’t be criminalised.

As we rolled out the pilot projects, we made sure that they were monitored and evaluated so we could go back to the naysayers and say, “Well, actually, this is what happened.” That’s really critical. Malaysia is not very good at having programmes that contain monitoring and evaluation. So, we want to do things a bit differently. 

Then, there is community engagement. Instead of putting people in prison, let them be managed in the community—we have wonderful community organisations like PENGASIH that’s all over the country. That can take on some of that role, they have “lived experiences” to be the kind of support that can reduce the risk of relapse. But they also need funding and capacity building.

Oh, and before I forget—everyone thinks that those who use drugs will immediately become addicted, right? Well actually, that’s not true. Each drug has its harm and the level of addiction is different. We know that out of 100 people who use drugs, only 10 will need treatment. Because there is a whole spectrum of drug use: there are people using it for the first time, others only when they go to a party, there are those who use it frequently but have it under control and can function normally. And there are people who need help.

At the moment, we are wrongly diagnosing addiction using urine tests, like urine test equals bad people, equals drug addicts.

Addiction, diagnosed clinically, is having substance abuse disorder because they have all these cravings and withdrawals. Urine tests just indicate someone may have used drugs. I wish I could tell you more but it is a whole other story altogether.

Image credit: David ST Loh.

RY: Let’s move on from the heavy issues to a simple question before we close. Describe one day in your life for me.

AK: [laughs] Well, if it was last week, it was crazy. A normal day means me going to work, coming home and doing more work. About four or five times a week, I have someone come in to exercise with me. Because if she doesn’t come, I don’t do it. So that is usually at 6.30 in the mornings on weekdays and weekends a little later.

Then, I go to work. It is not so intense now compared to when I was president of the International AIDS Foundation. Because they work in Geneva, it was 10pm calls for me. There’s a bit less of that now except for the WHO Science Council work and that’s not as frequent, and a few other things like the Lancet Commission on Health and Human Rights which will be published soon. We’d like to share that with you. 

You know, my husband and I live crazy long busy days, we prefer to eat at home, but we often get people dropping in to have cups of coffee even on weeknights.

RY: You play host as well amidst your busy schedule?

AK: Yeah, I am so blessed. I have someone who helps me with the cooking and cleaning. I’ve been blessed throughout my career and even when I had young children, I had someone who did all of that. That’s the beauty of living in Asia. It makes me sound so elitist, but that’s the truth. Otherwise, how do you do it?

RY: Yes, that is true. Thank you so much Prof, it was delightful chatting with you.

AK: Thank you, it was a pleasure!


[1] More in the Needle and Syringe Programme introduced by Adeeba Kamarulzaman: https://www.

Rachel Yeoh

is a former journalist who traded her on-the-go job for a life behind the desk. For the sake of work-life balance, she participates in Penang's performing arts scene after hours.