In 2015, Malaysia was one of the two first countries where the HCV Project was launched with Thailand. When Direct-Acting Antiviral Medications (DAA) arrived, the main goal of the project was to bring the medication into the country, where it was completely inaccessible at the time. The Malaysian AIDS Council, member of Coalition PLUS since 2019, managed to work with Third World Network (TWN), the Positive Malaysian treatment Access & Advocacy group (MTAAG+) and the Malaysian government to break the patents and make the DAAs accessible in the Malaysian territory in 2018. As MAC is doing a lot of prevention and education work related to HCV, Anushiya Karunanithy discusses how the access to the medication tumbled into more programs for HCV positive people and key populations in Malaysia.

Malaysia is the only country part of the HCV Project to obtain a government use licence to guarantee access to DAAs. What do you think led to this incredible victory for the community?

To me, it is undeniably the strong push from the community groups that have led to these necessary gains. The need for treatment was crucial for people living with HCV. I have witnessed and participated in their struggle for 10 years now, and seen some activists die during their fight to access treatments.

It took a tremendous amount of advocacy from the community-based organisations who, led by Positive Malaysian Treatment & Advocacy Group(MTAAG) in collaboration with the Malaysian AIDS Council, submitted a memorandum to the Minister of Health during the International Harm Reduction Conference in 2015. The event was held in Kuala Lumpur to demand to recognize Hepatitis C as a public health problem, as well as the need for governments to provide free DAA treatments to People Living with HCV(PLHCV). Following up from this, after several discussions between ministries, the government has announced Hep C as a public health problem in October 2016. One year later, in August 2017, the right of government use licensing was approved by the cabinet. In October 2017, the compulsory licensing (CL) was issued when at the same time Gilead Sciences has sent a letter to our Prime Minister to inform that Malaysia has been included in the voluntary licensing (VL).

Community groups have been there at every step of the way to make sure the best interests of people living with HCV or at risk of contracting HCV were heard. We played an important role when setting up the continuum of care services for key populations after the licence was approved. Hence, we knew access to treatment had to be made simple or we would lose patients. We worked closely with the Ministry of Health and civil society organisations on decentralizing and simplifying access to treatments so HCV+ people could get all their appointments at clinics that are closer to them.

Getting access to medication opened up the possibility of creating a lot of programs to improve care for HCV positive people. What kind of trainings were put in place to make sure health care providers could provide adequate support for the HCV+ community?

We were lucky enough to get funding with Unitaid through Coalition PLUS that allowed us to build multi-sectoral partnerships to train health professionals. The community groups have been involved since the beginning, therefore we were very present when the time came to train the health practitioners on HCV.

A lot of healthcare workers didn’t know basic knowledge of Hepatitis C nor what were the diagnostics and treatments available. Of course there is still a lot of work yet to be done, and covid-19 added more complexities to it, nonetheless we are very proud of everything we achieved so far.

As we’ve been collaborating with health care professionals on how to reach the targeted key populations for testing and treatment, we also conducted training to stop stigma and discrimination among health care workers. For us, it is clear that it is one of the main issues restricting access to healthcare for our key populations that we needed to act on. We’ve been training medical teams on sexual orientation and gender identity, as well as best practices such as non judgmental approaches and using the right name to build trust with trans clients.

We could train doctors on a national level so they could come back to their state and elevate the knowledge of their team. We’ve noticed a clear improvement among doctors working for the government, and we aim to train more private practitioners as well.

As treatment is getting better for most people living with HCV in Malaysia, it is unfortunately not the case for the incarcerated population. Can you elaborate on the Teman Project, MAC’s care program for HCV positive incarcerated people?

The incarcerated population in Malaysia cannot access tests nor treatments. Thus, we can only work with inmates whose time is almost completed to make sure we can direct them towards the resources they need when they get out of prison, whether it is getting tested because they don’t know their status, or accessing treatment if they know they are HCV+.

Our program is on a totally voluntary basis, they are informed of the existence of the program and can subscribe themselves. We work closely with prisons so our case workers are able to meet with the inmates two times before they are released, starting two months before.

We do not only provide a testing or treatment plan, we also work with them reflecting on how they will set themselves up when they leave prison; for example if they have nowhere to stay it’s less likely that they can get treated efficiently.

The third meeting our case workers have with inmates is literally on their exciting day. Our case workers accompany them to register for testing or treatment, helping create a first contact with the healthcare providers. We stay in touch with them for the six months following their release before referring them to other harm reduction organizations.

In terms of prevention, there is still a lot of work to be done with specific populations. As both homosexuality and drug use are criminalized in Malaysia, how does MAC manages to reach out to a key population like gay men involved in chemsex in such a complex context?

MAC regroups 46 community-based organisations that have already build trust with communities of men who have sex with men, people who use drugs and gay men involved in chemsex. A lot of our workers are or have been part of those communities, in that way trust has already been built.

We believe everyone should access healthcare indiscriminately. While leading a study on PrEP for men who have sex with men, some of the most important data we collected were that they had a higher representation of HepC positive people than the general populaition. That’s how we identified that we needed to know more on chemsex users, and we are coming up with a study specifically on that community.

On a more personal note, outside of your role of Project Manager for the HCV program, you gained a lot of following on social media by using your personal platform to do educational work. Among the themes you touch on, trans rights is an important one. As trans day of visibility approaches on March 31st, what are your thoughts on the importance of having trans people, and specifically trans women, involved in HIV and HCV community work?

As trans people, we need community led HIV and HCV activism so we can get what we need and what we want. We also have a lot of things to focus on as a community, since hormones are still not accessible in Malaysia and doctors are unaware of what our needs might be. Hence there are a lot of hormones circulating unprescribed with no monitoring of their side effects, which can have important consequences without professional intervention, like the failing of the kidney and liver.

Fortunately we have a lot of empowered trans ladies advocating for trans rights in Malaysia, and I am looking forward to seeing more young trans women getting involved in the fight. We need to animate the national conversation on HIV, HCV and trans rights, altogether.

To know more about MAC’s programs and updates, visit their website or follow them on Facebook, Instagram or Twitter.

You can find Anushiya Karunanithy on Twitter, TikTok and Instagram.