HIV Survivors Awareness Day

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Cassy O'Connor MP
June 2, 2022

Ms O’CONNOR (Clark – Leader of the Greens) – Mr Deputy Speaker, Sunday 5 June is International HIV Long-Term Survivors Awareness day. It is an annual event to honour people who have been living with HIV/AIDS since the onset of the AIDS epidemic in the 1980s, when I might note, quite of a few of the Gen Xers in here were growing up and going out into the world. We remember the terrifying spectre of the ‘grim reaper’.

Tragically, HIV/AIDS claimed millions of lives across the globe. Since 1981, according to the United Nations AIDS agency, 78 million were infected and an estimated 39 million have died of AIDs-related illnesses. And it is not over. In 2020, according to UNAIDS, 1.5 million people became newly infected and 680 000 people died from AIDS-related illnesses.

Today, many people in our community are long-term survivors. Around the world, 37.7 million people live with HIV, and 1.7 million of them are children. The 2022 theme of HIV Long-Term Survivors Awareness Day is, Mobilize to Thrive: Prioritize Quality of Life. It is a call to action to prioritise and improve the quality of life for long-term survivors and older adults with HIV. There are a number of these people in Tasmania, who I have had the privilege to meet.

HIV Long-Term Survivors Day is an opportunity to raise awareness that leads to action. And this is from survivors themselves. I am reading this statement:

We do not have the luxury of time to wait for the Government to do the right thing. We are tired, we are old, but we can still kick arse. The selection of June 5 for this annual observance coincides with the anniversary of the first official reporting of what became known as the AIDS epidemic on June 5 1981, when the Centre for Disease Control in the US first reported on five cases of a mysterious disease affecting young gay men. June 5 1981 is considered the start of the AIDS pandemic.

Today, HIV Long-Term Survivors represent a diverse group of people, diagnosed with HIV before the advent of highly active antiretroviral therapy in 1986. We make up about 25 per cent of all people living with HIV and AIDS: 1.2 million people are living with HIV in the US alone. That makes about 300 000 long-term survivors, defined as individuals who acquired HIV before 1986 and the introduction of the retroviral therapy.

Often overlooked, long-term survivors include people born with HIV or who acquired the virus as babies and are now in their thirties and forties. There are also people who are living with HIV and AIDS for more than a quarter of a century.

We are developing a social media campaign and tangible calls to action to improve the quality of our lives. It is up to us, they say, to set our action plan, addressing the present-day and future needs, issues and challenges facing people living longest with HIV/AIDS.

Long-Term Survivors Day is not a time to look back at our traumatic pasts. Our goal over the coming months is for you to set our agendas and priorities for moving forward and to take action to make changes. People living with HIV/AIDS deserve to age with dignity and some priorities that have been listed, making the quality of life for long-term survivors and older adults ageing with HIV and AIDS a true priority. Demanding universal treatment access to help end the HIV epidemic is the message of undetectable, untransmutable, prioritised, culturally-aware mental health care and overcome the challenges of poverty and economics insecurity to fight discrimination and invisibility which discriminates against older adults with HIV and AIDS, it is called ageism and we will not condone it.

A report by the national association of people living with HIV Australia, HIV and Ageing in Australia – The New Frontier, which was put out in April 2019 – finds that the vulnerability of long-term survivors, people with a longer duration of HIV infection constitute the most vulnerable sub-group among all people living with HIV who are ageing.

A study carried out by Guaraldi et all, in 2015 found that the prevalence of co-morbidities and age-related chronic diseases was significantly higher amongst HIV positive groups compared to the general population. That amongst HIV positive groups, duration of HIV infection was associated with an increased risk of multi-morbidity. Put differently, rank the time with HIV infection is a greater contributor to morbidity and lower quality of life, than chronological age.

Increased time, living with chronic disease, health and social implications, including younger age of HIV diagnosis, in effects of prolonged HIV treatment, or the effected longer time with untreated HIV infection. A study by Date (TBC 4.51.42) in 2018, writes that many of the longest-term survivors from the pre-retroviral therapy era continue to be impacted by the legacy of the early years of the epidemic. She suggested a diagnosis of complex post-dramatic stress or even a distinct aid survivor syndrome may be more accurate than that of a post-traumatic stress disorder in accounting for the psychological and psychiatric symptoms seen in some long-term survivors.

I acknowledge the great work of the organisation known as Positive Lives Tasmania which is a community organisation established to provide advocacy, support and connections for long-term survivors of HIV in Tasmania. I know for members that organisation is doing outstanding work. On behalf of the Greens, I acknowledge the lives, the struggles and the courage of long-term survivors of HIV and will mark Tasmania’s first celebration of HIV Long Term Survivor’s Day this coming Sunday.

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