Chuc mung nam moi!
Welcome to the year of the water tiger! In this edition of Poslink, community advocate, Jimmy Chen writes about including new voices in the HIV response as he introduces the Positive Asian Network Australia. We also hear about a recent partnership between the Centre for Culture, Ethnicity and Health and Living Positive Victoria and a story about how a tiger found its fearlessness.
The artwork for our cover this edition is by Prue Marks, long time contributor to the art and design behind Living Positive Victoria's health promotion during Lunar New Year celebrations.
New voices challenge and enrich us all
by Jimmy Yu Hsiang Chen
HIV has been with us for 40 years, but so has community. In 2022, we are seeing new voices step out to share their HIV journeys, in ways that both challenge and enrich us all.
Last year, on behalf of the National Association of People Living With HIV (NAPWHA), I led a national community conversation to better understand the experiences and needs of men living with HIV born in East or Southeast Asia.
Stigma always plays a big part in the journeys of HIV positive Asian men. It is experienced in dating, relationships and families, as well as during migration and in healthcare settings, especially in services with low caseloads of people living with HIV operating outside of the inner cities.
During our community conversation forums and interviews, I felt HIV positive Asian men forged a unique connection by sharing their experiences. This sense of peer connection and visibility is what has been missing for culturally and linguistically diverse people living with HIV in Australia.
Watch: learn more about NAPWHA's Health Literacy Framework from Louise Monteiro, Jimmy Chen, Anth McCarthy and Cristian Cortes here
My own HIV story begins when I moved from Taiwan to Australian on a working holiday visa. When I first arrived, I tested for HIV and STIs regularly. It was 2017 when I found out that I was positive.
I felt like my life had changed forever.
What would happen to my visa? How could I afford medication? Like many, I worried about my future and whether I was going to be alone forever.
I remember the nurse at the clinic gave me extremely helpful information about medication and what life can look like with HIV. It helped me believe that I would be fine. I started treatment, attended a peer workshop for the newly diagnosed and saw a counsellor. The workshop really opened my eyes. It enabled me to understand HIV knowledge and receive practical help. I felt empowered, and I saw the facilitators as role models. I thought that they were extremely brave, and I wished that I could be like them one day.
I started volunteering at ACON to give back to the community. But I feel like I have received more than I could ever give back.
Volunteering gives me a strong sense of community and belonging. I feel so connected to those around me in the HIV community.
Since then, I have continued to work closely with the HIV sector, especially with men who are gay, bi or have sex with other men. I worked for three years in health promotion and peer education at an HIV and STI testing clinic. Most recently, I have been working at NAPWHA on the HIV Health Literacy Framework Project for East and Southeast Asian men who are gay, bi or have sex with other men, which included our community conversations.
Towards the end of the year, this work has extended to developing the Positive Asian Network Australia (PANA). PANA is an advocacy network aimed at improving community for Asian people living with HIV in Australia. It involves different aspects of community development, such as building social and support networks and engaging research and policy development to include Asian PLHIV’s voices, ultimately to improve the health and quality of life experienced by our members.
Since PANA officially launched in 2021, we have established an online community on Facebook. We are able to share HIV related information quickly and build connections through regular community meetings and social events. Our engagement in research has led to me joining the HIV Futures 10 study as a co-investor, augmenting the survey by conducting a series of in-depth interviews with Asian people living with HIV. These projects expand the meaningful involvement of Asian PLHIV in the community response and improve our visibility and influence within the HIV epidemic in Australia.
Migrating to Australia with HIV isn’t easy. It is not like filing a document and waiting for a response. The cost, insecurity and the long, protracted process constantly impact on my quality of life.
There are many creative and skilful people in PANA who are willing to give back to this community. We are often made invisible or miss out on opportunities due to language, stigma and fear of further complicating our pathway to migration. Tailored and responsive support—like PANA—as well as other services, are needed. When I first moved to Australia, a free and friendly testing clinic made a lot of difference. Like me, a lot of temporary visa holders are focused on paying tuition fees and trying to make a living. An HIV diagnosis is an additional challenge many struggle to cope with.
Now that PANA has launched, the future I see for Asian PLHIV is hopeful and brighter in every aspect. Speaking to someone from a similar cultural background can help immensely. A personal HIV journey becomes easier when you know your voice will be heard. The core work of PANA is advocacy, and we do this in a way that engages, connects and shows Asian PLHIV that their voice and stories matter. The road ahead is looking long and rough, but I am proud to be in the Asian PLHIV community and passionate about to helping my people.
Jimmy Yu Hsiang Chen is a community advocate who has been working in the LGBTIQ+ and HIV sector in Australia since 2017. He has played a lead role in the co-design of NAPWHA's health literacy framework for Asian-born men living with HIV in Australia and the establishment of PANA - The Positive Asian Network Australia. Photograph: (supplied).
Partnerships start with a conversation
with Bernice Murphy and Timothy Krulic
Bernice Murphy and Timothy Krulic catch up about a new relationship between the Centre for Culture, Ethnicity and Health (CEH) and Living Positive Victoria, the work of the Centre in sexual health and blood borne viruses, and how it has supported people from refugee and migrant backgrounds through COVID-19.
Hi Bernice, to get us started can you tell me a bit about the work of the Centre?
CEH is a unique agency that works to improve the health and wellbeing of people from migrant and refugee backgrounds.
We do that primarily through professional education of clinicians, allied health and other health service providers, government and community and not-for-profit organisations. We work on the basis that if people undertake professional development to understand cultural competence and cross-cultural communication that when people from refugee or migrant backgrounds attend their services, they will get a more timely, better quality of service.
CEH’s Multicultural Health and Support Service (MHSS) deals specifically with blood borne viruses and sexually transmitted infections in refugee, migrant communities and international students. Many of the larger source countries of refugees and migrants to Australia have things like hepatitis B as endemic in the population. Our focus is education in those communities. Viral hepatitis can be managed but left untreated it can go on to do some serious damage. Certainly, in the case of hepatitis B and C, it can lead to liver cancer. It’s much better to intervene early, do community education around understanding that there is no shame. This is not a reflection on you. You’re not a bad person because you have hepatitis but with treatment and management you will live a long and happy life. Particularly now that treatments work very well. This program also extends to our work in HIV and other STIs.
Our projects arm responds to emerging needs. Care needs to be taken when communicating with refugee and migrant communities.
If a pandemic can have a silver lining, it would be that our policy system is recognising that one size does not fit all in terms of communication for COVID-19.
We have had a range of successes that have fundamentally been about explaining COVID, restrictions, vaccination, those sorts of things, to communities. The issue now that we no longer have zero COVID will be that many more people will catch COVID in Australia and a percentage of those people will go on to develop long COVID.
We also manage Health Translations on behalf of the Department of Health. We understand that we potentially have the largest translated collection of health and wellbeing material in the world. A lot of our work is about taking information, recreating it in a way ideally with the involvement of communities into a format and language that they understand and then delivering it to the rest of the community.
Where does that strong connection with people from quite diverse and mobile backgrounds come from?
We are located in the Richmond high-rise housing estate. CEH is a program of North Richmond Community Health and the community centre has been here in one form or another for about 40 years. North Richmond was recognised for its expertise in working with people from refugee and migrant backgrounds. In the late 70s or early 80s there was a massive influx of East Timorese refugees into Australia and many, many of them settled in this estate. And many are still here and work here and have for a long time. The community health centre has always enjoyed quite good engagement with the local community which is very diverse. The development of CEH is a recognition of the skill that North Richmond Health had accrued in working with these communities.
What does your professional development work look like in the area of HIV and sexual health?
We have expertise working with communities on sensitive issues, which extends to HIV. Helping people have those sensitive conversations is increasingly the sort of workforce development that we are asked to do. How do you raise the issue? How do you talk about it? A lot of sexual and reproductive health agencies who are very good at working with English speaking people don’t seem to have reach into other communities. They know of people who live in the area who never attend their services. How do we address that?
Last week we had an experience when we were invited by a health service to come up and do a talk on sexual and reproductive health with some women who gather regularly in Mildura. We sent our rep up there only to be told that the women had cancelled. They’re not going to come to an event called sexual and reproductive health.
There is often a piece of engagement that needs to go on before you can raise what may be very sensitive topics. If you framed it as something much less sensitive, then you can get people coming along to talk about their health.
Some people will say that they’re not interested learning about STIs because you only have sex with your husband. We need to find another way into that conversation. It’s about taking the time to engage with the community, understand what’s important to them and understand how they frame certain issues.
CEH and Living Positive Victoria recently signed our first MOU. What can you tell me about the new relationship?
Partnerships start off with a conversation. Who are you and what do you do? Where do we have common interest and what can we do to further it? For both of us, we hope that the partnership would increase our reach into refugee and migrant communities who are living positive or at risk of contracting HIV. We are here to support Living Positive Victoria to improve its effectiveness in with working with culturally and linguistically diverse communities.
We have a pre-existing relationship, but the MOU makes that more concrete, with obligations on both sides. There was a meet and greet a few weeks ago. I wasn’t able to make it but I heard that I missed a really good session. There was a lot of enthusiasm and commitment. There is agreement to share resources and do workforce development together and we are trialling a community advisory group, which Living Positive Victoria will have a spot in.
What communities do you think we might be able to gain better engagement with through work force development and sharing that kind of expertise?
Working with faith groups is a good example of where professional development may help with the kind of community engagement that needs to be done before you can do sexual health promotion with refugee and migrant communities. Whether the community leader is the pastor, the imam or another faith leader depending on the religion you have got to have those people on board before you can get a look in the door.
There’s often years of work in encouraging people to understand that HIV is not an issue of shame or anything else. It’s an illness. It should be treated as such.
There are effective treatments and people will go on to live long and healthy lives if it’s diagnosed and managed well. Which is a different message than what it was 20,30 or 40 years ago. Previously, there were terrible side effects from treatments, and the outcomes were not good. Now, the earlier the diagnosis the better the outcomes. It’s a good story that people need to be updated with.
It’s like you said earlier about connecting people in a timely way. It can take people a long time to find organisations. It would be quicker for us to find them if we had historical engagement and reach into places like faith communities.
That’s right. For us, the relationship with Living Positive Victoria is about identifying new communities where HIV is an issue. What we know anecdotally, is that refugee women are diagnosed quite late and often during pregnancy. There are many reasons for this. In addition, men travel to countries with high HIV incidence and come back to Australia. It’s important to know in which source countries, communities and pathways where it’s an issue.
Thank-you so much sharing all of that. To end, I wanted to ask if there was one thing that you could change overnight to improve the health and wellbeing of refugee and migrant communities living with HIV, what would it be?
What I would hope is that the stigma around HIV continues to reduce. I think there has been a dramatic reduction around HIV over the last 40 years. And I would hope that that would continue. As treatments improve it really is just another blood borne virus. Prevention has also come along way. More can be done to increase the uptake of PrEP for refugee and migrant communities. But it really is the stigma that isolates people and prevents them from seeking treatment and help. We need to reduce the shame that is associated with it in some communities. If I could pick something overnight, it would be the thing that’s hardest of all: changing attitudes towards HIV.
Bernice Murphy is the Manager of the Centre for Culture, Ethnicity and Health. Bernice has worked in homeless and family violence, women’s health, counselling in community health, family planning and school nursing. Equitable access to services has been a theme throughout her career. Photograph: (supplied) a Multicultural Community Action Network workshop for Latin community exploring the basics of HIV.
Finding fearlessness
Shaun was born in the year of the tiger. He writes about how self-compassion was part of his path to overcoming his fears about HIV.
The tiger represents fearlessness in the face of adversity, but my HIV journey wasn’t that straightforward.
When I was 17 and living in Malaysia I had a very ambitious dream – to become a Neurosurgeon. I was so excited when I received an offer to study abroad. My plan was to study for my senior year of high school in Adelaide and then pursue a degree in health science.
Before I could fly over to Australia, I needed to apply for a student visa and complete a health check. I made the appointment without any hesitation, but I’m quite afraid of needles. I remember that I was so restless in the waiting room that my dad walked over to me and whispered in my ear to tell me that I should just sit down quietly. When it was time, the nurse told me that everything will be alright. I saw a very huge needle gauge, but it didn’t take too long for her to withdraw about three-four tubes of blood.
I received my results in person. The nurse who withdrew my blood walked over to my seat and I knew something was not right. My dad and I were in the doctor’s consultation room together. Everything had come out great, except for two tests. I didn't think my dad was going to be able to handle what was said next. Then the doctor told me, Shaun, you have tested positive for HIV and Hepatitis B.
I broke down right then and there. I felt like my life was over. I cried on the way home and just didn’t know what I should do.
I grew up in a very conservative Malaysian Chinese family. As a high achiever, everyone tends to have even higher expectations of you. You are typically not allowed to make mistakes. Everyone’s looking up to you – not just your family members, but the entire community that surrounds you. After that day, my depression was at an all-time low. I blamed myself a lot. I felt embarrassed and I was scared that I would be judged. Slowly, I started to do my own research, looking at what I should do next.
It was not long after the test results that my parents made the decision to consult an infectious disease specialist. After telling him my story, he said that the main decision to make was whether to start HAART. Based on my blood work, he wrote me a letter stating that I was OK delay starting treatment while living in Australia.
Nothing else changed that year. My parents didn’t discuss HIV or ask about how I felt about being HIV positive. We decided not to tell other friends or family. The day of my diagnosis passed in the blink of an eye and my parents came over to Australia with me to help with settling down in my new environment.
At the time I was worried. I didn't know what would come next and I fell into denial. I am the type of person who will not let fear get in the way of life. I was born in the year of the tiger! But that was not the case with HIV.
Before I knew it, it has almost been eight months since I was diagnosed. I was confused and ashamed. I kept asking myself: how could this be? Eventually, I convinced myself that I was dying.
The turning point came for me when someone asked me why I cared so much about what other people had to think or say. It was okay to be afraid of the uncertainties, but if I wanted to be happy, I should follow my heart and do what I want in life. After that I slowly but surely started to accept my diagnosis.
If HIV was going to be part of me, I decided that I could at least control my response to it.
I walked into a sexual health centre and they decided to put me on a new treatment. I didn't know exactly all of the risks, but I am glad I started when I did.
It is six years ago now that I got the positive diagnosis. At that time I wasn’t kind enough to myself. Now I know I am doing something to take care of myself every day – I never miss a pill and my viral load is undetectable. Taking charge of living with HIV brought other benefits. I am more open with my parents and they will ask about my health too. I started to love myself more and appreciate what is around me. I have given myself a second chance to talk about HIV and forgive myself.
Shaun* is a Victoria-based member of the Positive Asian Network Australia (PANA) and has been living with HIV since 2016. Photograph: (Shutterstock) Melbourne Chinatown during Lunar New Year in 2019. *a pseudonym was used to protect privacy.
The artwork for our cover this edition is courtesy of Prue Marks, from Ography. Prue is a long time contributor to the art and design behind Living Positive Victoria's health promotion during Lunar New Year. We have put together a gallery showcasing some of the banners we've displayed at festivals and celebrations across Victoria Street and Southbank over the years.
ISSN 1448-7764
Credits:
'Strength can require change' (2022) Prue Marks and Living Positive Victoria.