Well Beyond 50: a single destination for everything HIV and ageing.
by Dean Cassano and Mark Stoové
One fabulous consequence of effective HIV treatment is that the community of people living with HIV are living longer.
In Australia, well over half of all people living with HIV are now aged over 50 and there is an emerging and critical need to provide effective and community-centred services to support people to age well with HIV.
The new Well Beyond 50 website is a single destination for everything related to HIV and ageing. It aims to simplify and enhance access to community connection, information and resources that will enable people to live and age well with HIV.
Well Beyond 50’s launch last month marks a major milestone in a project that began in 2019, involving organisations across community health, research and clinical services. As a team, we are very excited to finally announce the launch of the website and introduce it to the community.
Engaging the community
Our vision for Well Beyond 50 was to be a trusted, one-stop-shop for everything related to HIV and ageing.
To achieve this, it was vital to not only understand the overarching health needs and concerns for people ageing with HIV, but also gain some insight into the barriers people experience to wellbeing and community connection.
We teamed up with the HIV Futures study at La Trobe University and asked respondents aged over 50 some questions about their health and social needs. Responses revealed that people ageing with HIV experience a range of challenges beyond those directly related to HIV. Isolation, loneliness and poor mental health were prevalent concerns affecting quality of life. These findings guided several focus group discussions with community members in 2020 to deepen our understanding of lived experiences of ageing with HIV and preferences for addressing these needs through a website.
Engaging with the community was pivotal. It ensured that the platform would reflect the needs of people ageing with HIV in Victoria.
Many perspectives were gained that translated directly into the new website: the bright look and feel, the clear layout of functions and content, as well as the visibility and representation of older people living well with HIV, through videos, stories and photos.
Visibility and connectedness
When landing on the Well Beyond 50 site, the first thing that users see is a collection of portrait and group photos of the community. These photos help people navigate the website, which has been divided into five key sections to reflect the broad themes that came from research and community engagement.
The first section, Personal Stories, contains interviews with members of the community, who discuss their experiences of ageing with HIV. We also hear the personal story of a clinical with long community connection and experience in HIV management. With three interviews currently online, the page gives a glimpse of what is to come as the website matures, with written stories, letters from the community and video interviews to be added.
The Health Topics section provides clear, up-to-date information on common health concerns that affect everyone who is ageing and their specific importance for older people living with HIV. Written in collaboration with HIV specialists from Alfred Health, these pages offer users a trusted source of information on different health topics, as well as ways of reducing risk and seeking support.
Connecting people with the right support is the ultimate objective of the website. This is in relation to health concerns as well as programs and resources to assist with day-to-day needs.
A Social Hub offers a place where users can find information on volunteering opportunities, events or peer-led programs. It also provides links to groups and online communities of people living with HIV for socialising and networking. While our Service Directory provides information about organisations, services and clinics that support older people living with HIV.
Lastly, the section on Support and Future Planning looks at a variety of topics related to ageing well and planning for future needs, whether through My Aged Care, nursing services, or assistance with care coordination.
Growing and evolving with time
Going live is a milestone for the website, but it is only the beginning for this resource, which will grow and evolve with time. Our research and engagement with the community highlighted that for the website to be reliable, it has to be current and up to date, which includes updating content based on new research, additional services available, or common questions that come through the website's Ask a question page.
All parties involved in this project are excited to present the new website and share it with people living with HIV in Victoria and those who are looking for information on healthy ageing. As we look towards the future and the changing effects of HIV in Australia, we are committed to seeing this platform grow and working with the community in this journey.
Seeking a deeper connection
By Cathy Chapman
Don't come home pregnant or get AIDS.
These were the chilling words, just like the impression from the grim reaper ads, said to me by my father when the AIDS pandemic was in full swing.
I almost did both, in a way. I did get pregnant in 1992 and in 1995 I was diagnosed with HIV.
I grew up with strict Italian parents. I was never allowed to go on school camps or stay over at friends' houses. I was pretty much left to my own devices. My parents were always working long hours in fruit shops. A couple of those shops had premises upstairs to sleep in. We moved around a lot and that made it hard to maintain friends.
Living behind fruit shops was not as interesting as it seems. I felt lonely and I would eat almost anything in sight, except for fruit. I had put on so much weight and was constantly teased about it. My self confidence plummeted.
This made it difficult to have the confidence to get through life. Boys were not interested in me. Employers would judge me on my weight.
All I ever wanted was to settle down and find a good man and live happily ever after.
I never had casual sex and I lacked experience with dating men. I thought, in a way, that I was protected from HIV. I was always told nobody would want you if you have AIDS.
Everyone I knew was afraid of it. The stigma had stuck. I was still naïve about HIV but I decided to keep reading and educating myself about it after I became positive. I now offer advice to various people. I am concerned some people do not use protection in casual relationships. If I can save somebody from acquiring HIV then I am happy.
I did not start meds until after my mother passed away in 2008. I spared my parents the knowledge that I had HIV. I was afraid of their reaction and what my father would do if I told him.
I spent some time at Fairfield House when I started treatment. I thought I was going to die. I saw so many sick people. The medication made me feel sick and I did not want to take it. Eventually, I was put onto a single pill combination of emtricitabine and tenofovir.
Amazingly, my blood results showed that with only one pill that I was doing ok. With improvements in treatments and more research done on HIV I was put onto a three-in-one pill. Up until this day, I am undetectable.
Recently, I told a person about U=U. They didn’t know that you can’t pass on HIV if you have an undetectable viral load. This message is so important and needs to be out there.
My biggest dilemma has been telling potential partners that I’m HIV positive. I was lucky to find someone understanding and in 2016 in met my current partner.
When I was first diagnosed, I never thought 26 years later that I would be here. Although I was well, the doctors thought my days were numbered. I thought of things differently and made the most of the people in my life. At the time I heard of people cashing in their super and booking trips to make the most of the time they had left. That’s what most people did back in the nineties as we were told there was no hope for us.
During lockdowns last year I decided, due to loneliness, that I would connect with others who were HIV positive. I joined many groups including Living Positive Victoria, Thorne Harbour Health and Catholic Care. Zoom calls got me through so many negative difficult hard times. It was great to talk to people who were experiencing the same feelings. I know I’ve made some lifelong friends.
I also joined a self-management program, Taking Charge for people living with HIV over 50. We were given realistic tasks to complete and talk about our plans to make our lives happier and easier. Most recently, I participated in Positively Women, a research project using art to express what it means to be a woman living with HIV in Australia. We were encouraged to close our eyes, let our thoughts flow and paint what we remembered from the year of our diagnosis.
I am now considered a long-term survivor. I wear this with pride. I feel HIV has made me determined and stronger to lead the life that I want. I have been approached to participate in interviews and research. If I can offer advice or support I am happy to do so.
I’ve learnt from HIV to not be defeated. I urge people to take treatment, eat healthier meals and reach out to friends. Mutual support is important to long term survival of HIV. We cannot control what people think about HIV. It is important rather to do what we can for, and believe in, ourselves.
My Aged Care or disability support might be right for you
by David Menadue
HIV positive seniors might not have expected to be here to have to deal with aged care. If you’ve lived long enough to experience significant fragility or disability in your life, there are a number of options available to make things easier to live a better quality of life.
My Aged Care – Barry’s story
Barry was told when he was diagnosed in the late eighties in London that he should return home to Australia and get his personal affairs in order. He might only have a short time to live.
"I was diagnosed over thirty years ago and thought at the time that living into my eighties was a pipe dream.”
Now, he is grateful to have been offered a Level 2 package with My Aged Care, which handles many of the health-related costs he would struggle to afford on an aged pension.
“I've been given a case worker who can approve finance to cover things like physiotherapy, swimming classes and any aids I might need. But they have also sent handymen to replace my air conditioning, change ceiling lights and taps in the kitchen and to regularly do my garden.”
Barry discovered My Aged Care by chance. “I rang my local Council to get my gutters cleaned as I won't climb ladders these days.” The Council worker said it would be easier if he joined My Aged Care for these types of tasks. “I rang the number the worker gave me, and they picked up straight away. After few questions they sent someone to my house for an assessment.”
The assessor agreed Barry needed some help and initially put him on Level 1 of My Aged Care, which covered enough for four services to his home. “It's not your money but stays in your account with them and can be accessed by the My Aged Care staff to pay any bills for your care.”
He was asked to select one out of several public and private providers in his area.
“I chose Northern Health which has offices near me. I liked that they had a fully inclusive policy and would happily look after anyone from the LGBTI or HIV positive community. They also don't charge huge administration fees which some private providers are known to do.”
The same Case Advisor has stayed with him ever since. “I can ring her at any time if I have a problem and they've been very responsive.” After a fall last year, his package was lifted level to Level 2, which allows greater expenditure. “If my health falters in the future, knowing that I can have my level of care increased relatively quickly has given me peace of mind. I know the packages can take time to deliver these days but once you're in, the service is very good, from my point of view."
You can access My Aged Care if you're over 65 and have a significant level of frailty or disability. It is probably a good idea to start with your GP, as they can provide details of your medical history, but any healthcare worker can help you.
There are four different levels of packages starting at $9000 a year for four hours care a fortnight and going up to Level 4 (high care needs) at $52 500 if you need in home care or assistance of some kind nearly every day. Waiting times for higher level packages can take many months but you will be provided with help in the interim if you are assessed as needing help. If you are an aged pensioner the service is free and part pensioners pay a small fee with self-funded retirees paying up to $32 a day for services, depending on their income level.
The National Disability Insurance Scheme (NDIS) - for under 65s
If you're HIV positive, under 65 and experiencing significant impairment or disability you can apply for an assessment for support through the NDIS. Like My Aged Care, there are numerous providers who have to go through extensive training to receive accreditation to be able to care for the range of disabilities they may look after.
We are fortunate in Victoria to have Thorne Harbour Health accredited as an NDIS provider and they have a number of trained support workers who can visit people in their homes, help them with care or home duties, take them on social outings, for a coffee or to medical appointments, for instance – aiming to make their lives easier and more manageable.
Dan O'Brien is the Support Coordinator for Thorne Harbour Health's NDIS program. He said that Thorne Harbour Health has provided NDIS services for just over two years to date.
"We support people from the LGBTIQ+ and PLWHIV+ Communities who have been funded under the NDIS in relation to their disability. We have a small group of clients at the moment and the numbers are growing all the time as people seek safe, stigma free services."
"The principle of the NDIS is that, once a client is assessed as needing a certain level of support, they will be given an account with funds to be able to manage their support needs. Often with evidence from their GP, physiotherapist, occupational therapist or psychologist, for instance, a plan is drawn up about the various therapies and care requirements they'll need and a funding package is worked out."
“The NDIS is a person-centred system and the individual gets to have more input into making their own decisions on what they need for a good quality of life. The client is even able to change the agency they are using if it is not to their satisfaction. If a client wasn't happy with a service, there are others who are offering LGBTIQ+ friendly services. Apart from Thorne Harbour Health, Pride Victoria offers NDIS services to the LGBTIQ+ and PLWHIV Communities.”