Viewing the HIV response during pandemic times as a significant life experience: Perspective from a gay man living with HIV in Malaysia

By October 9, 2020 Learning, Newsroom, Regional

Yusralhakim Yusoff, National Technical Manager, Malaysian AIDS Council

I joined Malaysian AIDS council in November 2016 and am now serving as the National Technical Manager to oversee programmatic components of HIV response   at national level. I started my NGO work as an MSM Outreach coordinator at PT Foundation in 2012. Over the past 9 years, I have experiences working with different marginalised groups namely PLHIV, LGBTIQ, Sex workers, People who use drugs, Refugees and Indigenous people. I identify myself as gay who is also living with HIV. As a person who used to work in the humanitarian field and now works in HIV, the HIV response during the pandemic is a significant life experience for me personally. 

The Malaysian AIDS Council (MAC) was established in 1992 to serve as an umbrella organisation to support and coordinate the efforts of non-governmental and other organisations, working on HIV/AIDS issues in Malaysia. MAC works in partnership with government agencies, the private sector and international organisations to ensure a committed and effective response to HIV/AIDS issues in Malaysia.

MAC, comprising the Secretariat and its Partner Organisations, provides nationwide coverage of community-based HIV services and serves as the common voice for the communities served. Besides coordinating and streamlining programmes of its partner organisations, the MAC Secretariat also provides these organisations with the necessary training, funds and other resources to implement effective HIV/AIDS programmes within various communities in Malaysia.

What were some issues that you experienced living with HIV in Malaysia before COVID-19 hit your country?

Before the COVID-19, the pertinent issues as a person living with HIV I ever experienced (and are still experiencing) are:

  1. Stigma and Discrimination at different levels in different settings, such as at my workplace and in education. As a person who is trained in Maritime defence and hydrography, my HIV status forms the biggest bottleneck in pursuing my career.
  2. Insurance coverage for PLHIV is another issue, especially when living with HIV for almost 12 years and aging with HIV without insurance coverage really concerns me.

With the effect of COVID-19 outbreak, how did that affect your life, work, and access to HIV and other services? How have you been able to stay resilient? 

On a personal level, COVID-19 is something unexpected. Being in lockdown for almost 3 months has put me in a difficult situation in going through daily life. My anxiety mostly came from not being able to do work with my team effectively. At times, I have breakdowns which affect my health. In terms of HIV and other services to access, I’m very lucky that I have a good support system, I would say having a good support system is the most important tool of being resilient. This means either being connected with friends virtually or being surrounded by like-minded friends or peers during the lockdown. I used my personal skills, such as proposal writing to mobilize resources for the community. This is one way for me to overcome anxiety.

What are the issues and gaps that your organisation are trying to address in your community as a result of the COVID-19 effect?

The post COVID-19 has affected community groups in different ways. Acknowledging the gaps, we have adopted different approaches for short term and long term results. These include:

  1. Mobilizing financial resources to provide PPE, emergency ARV for migrant workers and refugees, hygiene kits and nutritional food packages for the affected community members and their families. For that purpose, more than 1 million Ringgit Malaysia have been mobilized from The Global Fund, Coalition PLUS, The Outright International, MOH and Malaysian Red Crescent to support more than 2000 community members, such as key populations and their families). 
  2. Combining Humanitarian aid together with the HIV outreach, testing and peer support activities to ensure the sustainability of HIV responses that are relevant to the current pandemic situations.
  3. Capitalizing online tools to reach out to community members. Learning from the COVID-19 experience, we strengthen the online interventions by providing all outreach workers with tablets, at the same time professionalising the online interventions. More than 200 community outreach workers have been provided basic training on creating digital platforms. We intend to invest and strengthen the digital platform further.  

How has COVID-19 outbreak changed the way that you/your organisation and other NGOs will be working in the future?

As an umbrella body which oversees national HIV response together with other partner organisation across the country, the COVID-19 has given us some lesson learned in term of:

  1. Crisis Preparedness – to closely work with other agencies, especially in the humanitarian field to immediately and effectively respond to the crisis situations. This includes mobilizing community workers/members to provide on site feedback and responses.
  2. Strengthening the differentiated HIV services for Key Population, to also address the gaps during the crisis. This means in this case focusing on online tools and platforms to be more resilient. It includes HIV self-testing that can be accessed via online platforms.

What are the worries from people living with HIV in Malaysia about the ‘new normal’?

  1. The main worries is the return of COVID-19 for the second or third wave that might affect the daily lives and might put people in hardship in their lives as their income is affectedespecially for the sex workers and other community members who relying on the daily wages.
  2. Other than that, PLHIV migrant workers who receive ARV from their country of origins might not receive their ARV if international borders are closed.

Are there any positive lessons learnt from the effects of COVID-19?

1.     The community system and network that is built for HIV response is as important as for the COVID-19 response, people are helping each other during the challenging time.

2.    Close monitoring and the transparency of COVID-19 data is as important as for HIV response, not in a way to provide panic but to provide urgency, awareness and financial prioritizations.

3.   COVID-19 related Stigma and Discrimination are hindering the COVID-19 responses, same goes to HIV responses.  

How is the Malaysian government addressing the issues experienced by people living with HIV? (are there funding from the Global Fund or elsewhere to help support?)

1.     As part of the preparedness, the existing strong relationship between the Government and SCO has provided good healthcare for PLHIV even during the  pandemic or lockdown. MAC together with the MOH has come to an understanding to make ARV access much easier. This includes providing 2 to 3 ARV months’ supply at once, ARV postage by hospitals and clinics directly to the PLHIV and community case worker assistance to deliver ARV to PLHIV in remote areas. 

2.     In cases where the government cannot provide, we work closely with other agencies like UNHCR to support ARV for refugees and GF to support the emergency ARV for affected PLHIV migrant workers.

What advice would you give to someone who is unsure of accessing HIV services during this time? 

To reach out to friends, community workers, NGO’s and get connected within the local peer support group. Furthermore to support each other.

Anything else you wish to add, please?

  1. At times when you feel alone or hopeless, it is important to reach out for help. 
  2. Stigma and discrimination either caused by COVID-19 or HIV, are both counter productive. 
  3. It is OK to take a step back and take care of your physical and mental health, especially when everything has to go very fast and you have to “catch up” now after the world has gone into lockdown for many months. 

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