AIDS Action and Research (AARG)

This interview session brought together two respondents at the AIDS Action and Research Group, Universiti Sains Malaysia. The interviews were conducted in a hybrid environment. The authors also had the opportunity to participate in several programs implemented by the AIDS Action and Research Group, Universiti Sains Malaysia. All the information in this report was obtained during the interview session.

AIDS Action and Research Group, Universiti Sains Malaysia (hereafter referred to as AARG USM), was established in 1994 and is now in its 29th year of existence. It operates as a unit under the management and supervision of the School of Social Sciences at Universiti Sains Malaysia. AARG USM was initiated and collaboratively formed by several key university officials and experienced lecturers in the field of Social Work, including Professor Dr. Azlinda Azman and Professor Dr. Ismail Baba. Additionally, it includes representatives from university lecturers in various fields such as Anthropology, Sociology, Counseling, Communication, Economics, Accounting, and Public Health. These individuals share an interest in the development of HIV/AIDS awareness and emphasize the importance of community knowledge and education in building a highly informed society.

AIDS Action and Research Group Building (AARG), Universiti Sains Malaysia

AARG receives support and collaboration from various partners, stakeholders, and primary funders dedicated to fostering a healthy and sustainable society. These include the Malaysian AIDS Council, the Malaysian Ministry of Health, the Malaysian Ministry of Education, the Social Welfare Department, the Malaysian Social Institution, the Ministry of Women’s Development, Family and Community, Royal Malaysian Police, Religious Affairs Department, Malaysian Prisons Department, and other non-governmental organizations (NGOs) with a shared focus on HIV education throughout the country. Furthermore, AARG has been entrusted with the operation of the Needle and Syringe Exchange Program (NSEP) in the state of Penang, funded by the Ministry of Health since 2006 and ongoing. Between 2010 and 2016, AARG also assumed responsibility for NSEP operations in the state of Perak, supported by funding from the Global Fund. In May 2019, AARG initiated a Comprehensive HIV Prevention Program (DHSKP), encompassing Men Having Sex with Men (MSM), Transgender (TG), People Who Inject Drugs (PWID), People Who Use Drugs (PWUD), and Female Sex Workers (FSW) in Penang and nationwide.

From an educational perspective, the pursuit of quality education, rooted in the National Education Philosophy, aims to cultivate individuals who possess knowledge, skills, and positive attitudes and values. This approach strives to empower individuals to proactively manage risks, prioritize their health, and embrace a healthy lifestyle while addressing social challenges. It underscores the importance of providing educational input at every societal level to promote a holistic and informed citizenry. AARG is currently under the patronage of Professor Dr. Azlinda Azman, who serves as the Convener. Dr. Azman holds the positions of President of the Malaysian Social Workers Association and Director General of Higher Education in the Department of Higher Education, Ministry of Higher Education Malaysia. She leads the organization with support from the Deputy Convener and a team of six staff members, including event coordinators and executors responsible for mobilizing AARG. The organization also collaborates with independent volunteers, primarily university students and members of the public. Many of the staff and volunteers have transitioned from roles as activists and participants in AARG’s programs and other NGOs. Most volunteers come from social work backgrounds and receive training in client handling and counseling management.

AARG’s central mission and vision revolve around providing education, knowledge, and awareness about HIV/AIDS to all segments of society, with the goal of fostering a sustainable and harmonious nation. The organization also functions as a research and study unit focused on HIV/AIDS, producing educational and informative resources accessible to all stakeholders. These efforts contribute to reducing the significant stigma and discrimination associated with HIV/AIDS, while promoting the creation of a healthy and inclusive society.

Interview

Interviewees:

Mr. Wan Azuan Wan Ali:  Executor, AIDS Action and Research Group, Universiti Sains Malaysia
Mr. Jagathesan Kupusami:  Executor, AIDS Action and Research Group, Universiti Sains Malaysia

Q: Can you please introduce yourselves?

Azuan: I am Mr. Wan Azuan Wan Ali, currently pursuing a Doctor of Philosophy in Social Work. I serve as a supervisor and executor at the AIDS Action and Research Group (AARG) at Universiti Sains Malaysia. My involvement in the field of HIV/AIDS began during my undergraduate studies, and I have since gained experience in working with various target groups, including People Living with HIV (PLHIV), Men Who Have Sex with Men (MSM), Transgender (TG), and Female Sex Workers (FSW). AARG is not only my main focus but also my primary job alongside my full-time doctoral studies in Social Work.

Jega: My name is Jagathesan Kupusami. I hold a degree in Anthropology and Sociology and currently work as a supervisor and executor at the AIDS Action and Research Group (AARG). My journey with AARG dates back to 2006, starting with volunteering for programs recommended by the organization during my undergraduate studies. Over the years, I have gained experience in working with specific target groups, including People Who Inject Drugs (PWID) and People Who Use Drugs (PWUD).

Q: What are your roles at AARG?

Azuan: I serve as the driving force and coordinator at the AIDS Action and Research Group (AARG), taking on a central role in managing all aspects of administration and operations. My responsibilities include overseeing program implementation, coordinating staff mobilization, managing external partnerships, monitoring team performance, and acting as a core leader within AARG. I work diligently to ensure the smooth operation of all AARG activities.

Jega: I am an essential member of the AIDS Action and Research Group (AARG), much like Mr. Azuan. Over the years, I have directed various programs, assumed the role of program manager, and been entrusted with coordination tasks. My journey with AARG began with smaller-scale volunteer work, such as distributing needles and providing drug usage information to clients in the field. Today, I collaborate closely with Mr. Azuan to structure and oversee both current and upcoming programs.

Q: How long have you been working at AARG?

Azuan: Since 2009, so I have been associated with AARG for about 15 years.
Jega: Since 2006, which means I have been engaged with AARG for approximately 18 years.

Q: Who is AARG trying to help?

Azuan: Among the groups are People Living with HIV (PLHIV), Men Having Sex with Men (MSM), Transgender (TG), People Who Inject Drugs (PWID), People Who Use Drugs (PWUD) and Female Sex Workers (FSW).

Q: How does AARG find its intended audience?

Azuan: AARG identifies its intended audience through collaboration with hospitals, clinics, and other healthcare institutions. These healthcare providers share valuable statistics and information about the target groups. Additionally, AARG conducts health examinations that are open to individuals from all segments of society, helping us gather essential data about our clients.

Q: How does AARG apply educational elements in the recovery process to the target group?

Azuan: AARG incorporates educational elements into the recovery process for the target group through interventions and counseling sessions. The information and education provided are initially consulted by beneficiaries, including hospital specialists and counselors, based on the client’s specific concerns. We aim to provide information disclosure, data sharing, and feedback, addressing issues such as the impact of encountered difficulties, as well as offering solutions and recommendations for rebuilding the social functions of those who faced challenges in effective implementation. This process contributes to fostering an informed and healthy community. Additionally, AARG emphasizes feedback on hygiene and healthcare, along with providing sex education on topics related to HIV transmission and infection.

Q: How is education implemented as part of the services offered by AARG?

Azuan: The implementation of education, as mentioned earlier, is carried out through various events organized by AARG, including talks, motivational speeches, forums, town hall discussions, seminars, workshops, conferences, and dialogue sessions. These initiatives encompass comprehensive education on healthcare, HIV/AIDS, and other relevant topics, making them accessible to individuals of all age groups and target populations under AARG’s supervision. The goal is to provide a structured curriculum that offers in-depth knowledge, covering aspects such as causes, consequences, risk factors, remedial measures, and strategies for building a healthier society.

Jega:  AARG also disseminates HIV/AIDS education materials through exhibit booths, brochures, infographics, and guides. These resources serve to inform and engage various stakeholders, starting from families and communities to government agencies and non-profit organizations. For instance, brochures and infographics are designed to raise awareness about the risks of drug use and needle sharing, emphasizing how HIV/AIDS can be transmitted through the circulatory system.

Q: To what extent is the importance of HIV/AIDS education needed in each group of society?

Azuan: The importance of HIV/AIDS education across society is twofold. Firstly, it provides crucial knowledge and awareness to individuals living with HIV/AIDS who may be experiencing fear and hopelessness. It helps dispel insecurities fueled by unreliable social media content and misinformation. Secondly, in today’s age of rampant fake news, HIV/AIDS education is vital in countering myths and misunderstandings surrounding this sensitive topic. Such misconceptions can lead to increased stigma and discrimination. Additionally, HIV/AIDS education fosters a positive environment by enabling those close to HIV sufferers to offer support and motivation, ultimately strengthening individuals’ ability to navigate their lives with greater calm and resilience.

Jega: This education is not only focused on the target group but also on the surrounding community. Change cannot be seen if the community does not support it, because the community is an important element in the life of this target group. Therefore, we need to convey information, awareness and education to the community. For example, a family consists of a mother, father, brother and sister, so all members need to provide moral support to people who are involved in drug use. It can be concluded that this education needs to be applied to the community and society around this target group because they all play an important role in the form of support.

Q: What has been the most challenging issue during your service at AARG?

Azuan: One of the challenges faced by AARG is addressing the stigma and prejudice that are directed at those who are HIV-positive and AIDS-positive. To attain this goal, AARG facilitates counselling and practical interventions to assist clients in regaining their ability to deal with the stigma and discrimination they encounter.

Jega: As a result of the high stigma and prejudice in the community, where individuals with HIV/AIDS are perceived as unapproachable, people living with HIV are scared to disclose themselves to anybody, including AARG itself. This is certainly one of the challenges that the AARG faces.

Q: Does the establishment of the AARG have an impact on the community?

Azuan: Despite the growth of AARG, which is drawing greater interest from an assortment of resources, it is obvious that it is having an impact on nearby communities and even the entire nation through the implementation of initiatives made in collaboration with other stakeholders to create a healthy and sustainable society. While HIV/AIDS education alone may not bring about comprehensive change in an individual’s life, it serves as a significant factor that offers support and motivation to those living with HIV. AARG’s establishment has had a substantial impact on the development and empowerment of people with HIV/AIDS, helping them regain a positive outlook and function effectively as contributing members of a harmonious society.

Q: Looking at the future of AARG, how important is education in the formation of a sustainable country and a healthy generation?

Azuan: HIV/AIDS education plays a crucial role in forming a sustainable country and fostering a healthy generation. It is a collective effort that involves government bodies, ministries, NGOs, and the entire community. Through educational initiatives, activities, and campaigns, we aim to prevent HIV/AIDS effectively. With persistent collaboration and support from all sectors, individuals living with HIV/AIDS can reintegrate into society without stigma or prejudice. This education is essential for building an inclusive and healthy society.

Jega: I believe that the absence of HIV/AIDS education can have far-reaching health consequences for the population. Given the interconnectedness of society, a focus on health is imperative. It contributes to overall well-being, from individual families to the broader fabric of the nation.

Q: What is the message that you want to convey to people?

Azuan: I want to emphasize that HIV/AIDS education is essential for everyone, as it directly impacts our daily lives and personal hygiene. I hope this education can reach all segments of society. Additionally, I urge policymakers to develop policies that protect and ensure the well-being of individuals living with HIV/AIDS, fostering a harmonious community.

Jega: Life is relatively short, and it’s crucial for everyone to prioritize their health. However, we should also not be too self-centered and extend a helping hand to those around us. If someone needs assistance, we should offer it willingly. While individuals facing challenges and social issues may be a minority, they are still human beings who deserve our attention and support. We should focus on them and provide help when needed.

Reflections

Comparisons

In light of the comparison that can be drawn between the research conducted by our international partners and related similarities and differences, Mexico selectedthe non-profit organization FM4 Dignidad y Justicia en el Camino, A.C (Dignity and Justice on the Road). FM4 serves as a centre for migrant transit and short-term shelter.

Challenges play a significant role in the Young Global Researcher Project, which involves multiple nations in its implementation process. The issues faced by the institutions interviewed in Mexico are quite similar in terms of limits and problems associated with stigma and prejudice, albeit in the context of different concerns and target groups. However, the commonalities in the challenges faced by both organizations are evident in how NPOs, which work tirelessly to protect the rights of affected groups and ensure their well-being, address stigma and prejudice within the community.

One challenge faced by FM4 is convincing someone that they are not too old to engage in recreational activities. The organization’s predicament in this scenario revolves around finding ways to eliminate the deeply ingrained prejudices and negative perceptions held by the specific individual in question. The non-profit organization expressed that they are pressed for time when it comes to dispelling negative stereotypes about migrants, particularly those held by the migrants themselves. During the interview, the study’s interviewer also delved into the issue of discrimination and the challenges individuals face as a result of being discriminated against. This issue hinders their ability to connect with their target groups, as people in those groups are often afraid to seek help due to the stigma and derogatory comments they might face.

We believe that instead of trying to completely eliminate prejudice, it is more realistic to focus on strategies that minimize its impact and the negative ideas associated with it. Firstly, this involves garnering public support and awareness for social norms and anti-prejudice initiatives. Educating the public about practices that promote respect and inclusivity for migrants and providing information about who migrants are and what they do is crucial. In essence, recognizing that every person is unique and holds different viewpoints is essential. It is inappropriate to impose our own perceptions on others and expect them to conform. People need to be mindful of the diversity in personal opinions.

As demonstrated by the research, intergroup contact emerges as one of the most effective strategies for reducing prejudice. Effective intergroup communication should be designed to capitalize on various facilitating factors, including equal status, cooperative interactions, shared goals, and support from authorities. According to the contact hypothesis, meaningful engagement in activities can influence children’s racial perceptions and reduce prejudice. To contribute to the reduction of HIV stigma, we can all play a role by carefully selecting our words and opting for supportive language rather than stigmatizing terminology when discussing HIV. Open conversations about HIV can serve to destigmatize the topic and provide opportunities to debunk myths and educate others about HIV. However, it is important to exercise caution when discussing HIV and individuals who are HIV-positive.

Upon examination, the interviews conducted in the aforementioned studies shared several common elements. Both studies emphasized the importance of a supportive and nurturing community in an individual’s upbringing. To effect a change in an individual’s behavior regarding the challenges they face, it is essential to involve not only family members and close friends but also the broader community and other stakeholders. The central concept here revolves around the necessity of education for individuals as well as their families, friends, and communities. Without proper education and a comprehensive understanding of the issues at hand, individuals may find themselves struggling to overcome challenges. This is because a sense of belonging is fostered when we are part of an active community. It enables us to establish personal connections while also supporting the continuous growth of ourselves, others, and our environment. Connecting with individuals who share our values, interests, and worldviews reassures us that we are not alone and fosters a sense of appreciation. In essence, belonging underscores the significance of community, as it provides us with a stronger sense of self and aids us in coping with challenging events and emotions.

References

https://aarg.usm.my/index.php/12-website/29-utama

https://aarg.usm.my/index.php/en/16-aarg

Researchers

Hi everyone! My Name is Muhamad Firdaus bin Mohd Nazri. I’m 23 years old and originally from Malaysia.  I’m the second child of four siblings. Currently, I am taking my Bachelors in Social Work at the School of Social Sciences Universiti Sains Malaysia.  I am active in various associations and clubs at the University. In addition, I am also involved with several charity NGOs as a volunteer. I’m involved in the field of volunteering such as participating in humanitarian missions and involved in organising programs that have an impact on the community.

Hola! I am Alissa Anne Alexander, but people call me Lissa. I grew up in Malaysia and have lived here 22 years. I am currently pursuing a Bachelor’s Degree in Social Work at the faculty of Social Sciences at the Main Campus, University of Science Malaysia. As a student of social work, I am involved in The Parish Integral Human Development Ministry (PIHDM) which assists people who require essentials, and several other NGOs with help from the church youth organisation.