KUALA LUMPUR, July 20 — When Moon was diagnosed with HIV in 2004, she was told by her doctor that she only had months left to live.
As an 18-year-old transgender woman, Moon was advised by the medical staff that there was no treatment for people living with HIV (PLHIV) and that the best solution for her was to pray and “repent.”
She only managed to find the proper care that would save her life when she got transferred to Sungai Buloh Hospital a few months down the line.
Sixteen years later, Moon not only lived to tell her story but she volunteers her time and efforts to help newly diagnosed PLHIV get back on their feet again.
Her experience was at the centre of Ineza Roussille’s award-winning short film My Life, My Story: Moon which won the top prize at the Malaysian AIDS Foundation (MAF) Red Ribbon Short Film Competition in 2015.
Being able to talk about her journey in her own words was an important step for Moon to reach out to other PLHIV who are facing the same struggles that she went through when she was first diagnosed.
“Many people have told me how meaningful the video was to them. I’m very grateful to Ineza for presenting my story in a way that was easy for everyone to understand.
“I know newly-diagnosed PLHIV who watched the video and they said it helped give them the courage and inspiration to keep going.
“From there, they would Google me up and reach out to me for support and guidance.
“The film was made five years ago but up until now, I still have people contacting me from all over Malaysia because they saw me in Ineza’s film,” Moon told Malay Mail.
Roussille said she picked Moon to star in her series of short films My Life, My Story because of her calm confidence and open attitude towards sharing her story of living with HIV.
The filmmaker said she wanted the series to be diverse as well, with a gay man, a married couple, and a single mother also starring in the films to share their individual journeys with the disease.
Working with marginalised communities meant Roussille had to ensure that the subjects of her films had the right support and protection in case of any backlash from the public.
“I take the responsibility of who I put on camera and what might happen because of that very seriously.
“We always do assessments beforehand to work out the risks of this person being on camera in a video online, especially if the person is from the LGBTQ community.
“I never want to put someone in danger and you know how horrible online comments can get.
“We want to make sure our subjects are confident with taking the risk and we build a support system for them in case there is backlash.”
Even with the hostile climate towards marginalised communities in Malaysia, Roussille said it provides even more reason to push back against it by giving a voice to those who have been silenced.
Strength in adversity
Reflecting back on her diagnosis, Moon said the caring staff at Sungai Buloh Hospital and support from her family played huge roles in helping her push on in her battle with HIV.
In Roussille's short film, Moon talked about how the stigma and discrimination towards PLHIV caused her to self-harm and sink into depression.
She gradually built her confidence back up through counselling sessions and became motivated to help others in the same way.
“Initially, I told the counsellors, ‘There’s no treatment for me. I’m just waiting to die. Why are you making me go through all this trouble?’
“That’s when they hugged me and told me, ‘Eating your medicine is your treatment. If you take it on time, you will be okay.’
“I was lucky to have a supportive family as well. I have nine siblings and my late parents were still around at the time, and they would visit me in the hospital to make sure I was fine.”
Moon now extends that same love and support to other PLHIV by volunteering through treatment adherence peer support programmes (TAPS) at various hospitals and community clinics in Malaysia.
She now looks after more than 400 PLHIV to make sure they stick to their treatment schedule, a job that she likens to taking care of a large family.
“Many newly-diagnosed PLHIV are very solemn when we first meet and I do my best to give them advice and knowledge from my own experience of living with the disease.
“I often tell them that the shoes they’ve been wearing for two weeks, I’ve been wearing for almost 17 years. That’s when they start opening up and asking me all kinds of questions.
“It’s good to know that after talking and opening up about their worries, they can leave the room with a smile on their face.
“Seeing their health improve is my greatest reward. I had one person who went from using a walking frame to walking on their own two feet again.”
Even during the Covid-19 pandemic and movement control order (MCO), Moon continued to visit hospitals knowing that there were PLHIV in the wards who needed her guidance more than ever.
“I was very stubborn. When others were told to work from home, I went to the hospitals because I knew the patients there needed my help.
“The risk of getting sick at a hospital is very high but I stuck to the standard operating procedures to keep myself safe and Alhamdulillah, I feel that God also protected me so I could do my job.”
Roussille’s short film continues to help Moon in her advocacy work today and is often used by TAPS counsellors to educate and motivate newly-diagnosed PLHIV.
MAF and the Sime Darby Foundation are hosting the second round of the Red Ribbon Short Film Competition this year and are calling on young filmmakers to conduct research on various issues related to HIV and AIDS and present them in a short film format.
The themes for this year’s competition revolve around sexual transmission, advances in HIV treatment and prevention, and stigma and discrimination experienced by PLHIV.
The two categories available for the competition are for secondary school students (aged 13-17) and tertiary education students and the public (aged 18-30).
MAF is also bringing back the People’s Choice Award where all video submissions from both categories will be up for public voting and the video with the highest social media engagements (likes and shares) will win the award.
Winners of each category are entitled to get cash prizes of up to RM3,000 along with trophies and certificates of excellence.
Participants may submit their video entries by the deadline of August 15 through online platforms such as YouTube or send a download link via WeTransfer by completing the submission form on the official competition website.
