The life expectancy of Australians living with HIV has been steadily increasing and is approaching that of the general population. As more of us living with HIV in NSW deal with the changes and challenges of growing older, Positive Life has carried out community research, needs analysis and consultations on aging and aged care, as well as regularly preparing submissions advocating for the interests of our ageing peers living with HIV here in NSW.

Barriers to Aged Care for Australians living with HIV

Throughout 2018 to 2020, Positive Life NSW carried out a comprehensive body of work in response to the The Royal Commission into Aged Care Quality and Safety which was established on 8 October 2018 by the Governor-General of the Commonwealth of Australia following media coverage of abuse of residents in aged care facilities. Positive Life recognised this was a unique opportunity to advocate for the current and future health care and support needs of people living with HIV, both in NSW and around Australia and consulted with people living with HIV, our caregivers, partners and family/friends, as well as HIV service providers who reside in and operate within Australia using an anonymous electronic and paper-based survey between 20 May and 15 July 2019. Our final submission identified stigma, discrimination and neglect as significant barriers to aged care for Australians living with HIV. We published a community report based on this submission: People living with HIV accessing NSW Aged Care Services.

Australians living with HIV & Aged Care Royal Commission into Aged Care Quality and Safety – PLNSW submission

In April 2019, Positive Life held a HIV and Ageing Forum where we consulted with our peers living with HIV, HIV service providers and other sector representatives about the impacts of HIV as we age. In particular, we discussed the impact ageing might have on our ability to live well with HIV as we navigate our health needs and the health system.

HIV & Ageing Forum Community Report – PLNSW report

In 2016, the NSW Ministry of Health engaged Positive Life NSW to assess the needs of people living with HIV as we access mainstream and specialist health care in NSW. A discussion paper was developed that described our current and diverse health care needs as we are referred into and access specialist and mainstream health care. The discussion paper was informed by three major information streams, being:

The PLNSW 2015 PLHIV Access to Health Care in NSW Survey
Face to face consultation with PLHIV and service providers in Sydney and regional/rural NSW during the period 2012-2015; and
A review of relevant research and publications.

In January 2018, the final report, HIV Complex Care in NSW (Appendices) was published.

In February 2018, Positive Life provided input to the Aged Care Workforce Strategy Taskforce on issues relating to older people living with HIV in NSW, while highlighting the broader demographic and background considerations for all people living with HIV across Australia. We submitted that the capacity of the aged care workforce and aged care facilities to meet the care needs, expectations and service requirements of people living with HIV and our families and communities, will largely be contingent on the workforce and its employers systematically maintaining adequate knowledge levels and capabilities to effectively meet the needs of older people living with HIV. We recommended that the aged care workforce will need to receive systematic and routine training on the range of health and social issues faced by people living with HIV in Australia to achieve the required levels of awareness, knowledge and capacity, so quality standards of care can be achieved and maintained.

In February 2020, Positive Life responded to the Dementia, Ageing and Aged Care Mission Roadmap Consultation to ensure the Australian Government takes into account our community views and our voices regarding the state of the aged care system in Australia. We provided input that contributed to the support of health measures and quality of life for older Australians living with HIV as we age, live independently for longer and access quality care when we need it.

Further submissions to the Australian Government regarding the Aged Care Workforce in Australia included Submission into the Reimagined Personal Care Worker Discussion Paper, in July 2020 and in 2021 feedback and input into Training Package Products for workers in residential or community care settings with clients who require personalised support due to ageing, disability, or other reasons including HIV. We recommended that a personal care worker (PCW) should be trained to an accredited high standard, and remunerated accordingly. PCWs are integral to the safe, effective, and quality delivery of aged care services to all ageing people in Australia, including people living with HIV.

Retirement Income system and Australians living with HIV

In 2020, Positive Life NSW made submission to the Australian Government regarding the independent review of the retirement income system that the Government announced in September 2019. The Review is to consider the current state of the retirement income system and how it will perform in the future. Even though NSW has the highest number of people living with HIV in Australia (44.4%), Positive Life took a national approach in this submission. A substantial proportion of older Australian people living with HIV are financially disadvantaged by Australia’s retirement income system, and achieving adequate retirement incomes will affect all Australian people living with HIV at some point in time.

Disadvantage extends across the three pillars of 1) the Aged Pension; 2) compulsory and voluntary superannuation contributions and savings; and 3) voluntary savings, including asset accumulation and home ownership. If people living with HIV are to adequately provide for retirement, changes to the current retirement income system will be necessary. If this is not forthcoming, older Australian people living with HIV will continue to be financially disadvantaged in retirement and live below the poverty line.

Positive Life NSW submission to the Retirement Income Review Secretariat – PLNSW submission

Human papillomavirus (HPV) Working Group

In 2018, Positive Life and Femfatales developed a community-based national survey, ‘Survey on Cervical and other HPV-Related Cancers‘ targeting women and trans and gender diverse (TGD) people living with and without HIV to access awareness, risk and screening for HPV and HPV-related cancers of the cervix, vagina, vulvar and anus. The results of this survey highlighted a lack of awareness of risk, prevention, symptoms, and early detection of HPV-related vaginal, vulvar, and anal cancers.

By April 2019 Positive Life NSW released the joint survey report: ‘A Community Perspective: on human papillomavirus (HPV)-related cancer among women and, trans and gender diverse people’, which made the following recommendations:

Assess awareness and knowledge of HPV infection and risk for 4 HPV-related cancers (cervical, vaginal, vulvar, and anal) among women and, trans and gender diverse people in Australia;
Assess the knowledge gaps to inform the development and implementation of population-specific educational resources to increase community and healthcare professional awareness of HPV and related cancers;
Assist with the prevention of morbidity and mortality by increasing screening, early detection and treatment of HPV-related cancers, and;
Assess rates of HPV vaccination in women and, trans and gender diverse people.

The results of the survey indicated there was a need to raise awareness, improve screening rates and increase vaccination rates among the populations surveyed.

As an outcome the HPV Working Group was convened in July 2019 to implement key recommendations outlined in the Joint Report (p.30, A Community Perspective 2019):

Raise awareness of HPV-related cancer risk and symptoms (cervical, vaginal, vulvar, and anal) among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people;
Increase screening for anogenital HPV-related cancers and particularly anal cancer among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people;
Increase vaccination rates among HIV-positive and immunocompromised women and, trans and gender diverse people;
Increase awareness of the new National Cervical Screening Guidelines;
Increase clinician awareness of the need for entire lower anogenital tract examinations among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people;
Increase clinician-initiated discussion of HPV-related cancers; among women and, trans and gender diverse people living with HIV, and immunocompromised women and, trans and gender diverse people; and
Increase awareness of HPV-related cancers in the general public and sexual health for women (cis and trans), trans men and gender diverse people.

The HPV Working Group is made up of health professionals who work with women, other allied health professionals, researchers, stakeholders, and women and trans and gender diverse people with a cervix/vulva/vagina including those living with HIV. The group is chaired by Positive Life NSW and meets quarterly.

People living with HIV and HIV Associated Neurocognitive Disorder (HAND)

In 2015, Positive Life conducted a community survey which asked people living with HIV about our concerns and experiences of HIV associated neuro-cognitive disorder (HAND). The results of this research identified five key areas for resource development to assist both people living with HIV to talk about HAND and for healthcare workers, service providers and significant others on how to respond meaningfully when addressing or raising concerns about the possibility of HAND with people living with HIV.

Developing resources to assist people living with HIV Associated Neurocognitive Disorder (HAND) Report

In 2016, we published two companion booklets, one for people living with HIV and one for partners, friends and family of people living with HIV experiencing HAND.

HIV Associated Neurocognitive Disorder (HAND) Booklet

HIV Associated Neurocognitive Disorder (HAND) Booklet for partners, friends and family

We acknowledge and thank the members of the ‘HAND Think Tank’ who contributed to the development of the resource, Multicultural HIV and Hepatitis Service (MHAHS) for their feedback and editing to make the resource accessible for those from culturally and linguistically diverse (CALD) backgrounds.

We would also like to pay special acknowledgement to those people living with and affected by HIV who contributed their valuable time to complete the survey and those people living with a HAND diagnosis who participated in the final focus testing of this resource to better reflect the needs of people living with HIV and affected by HAND.

We also acknowledge the work in the development of this resource by: Prof Bruce Brew, Department of Neurology, St Vincent’s Hospital, Darlinghurst; Denise Cummins, Clinical Nurse Consultant, Sydney District Nursing, Community Health, Sydney Local Health District and David Crawford, Treatments Officer, Positive Life NSW.

Anal Cancer Advocacy Group

The Anal Cancer Advocacy Group was established in 2013 to:

Raise awareness of HPV-related anal cancer in high risk populations (all people living with HIV, HIV-negative gay, bisexual and men who have sex with men [GBMSM], trans and gender diverse identifying people) and the need for regular screening and early detection of anal cancer
Raise awareness of HPV-related anal cancer in clinicians treating high risk populations and the need for regular screening and early detection of anal cancer
Advocate for referral services at hospitals (a few major hospitals in centres of populations at high risk) where HRA can be performed as a diagnostic service
Advocate for expanded access to HPV vaccination in high risk population groups.

The group is made up of clinicians, researchers, and representatives from a range of HIV sector organisations and the Cancer Council of NSW. The group is chaired by Positive Life NSW and meets quarterly. While anal cancer is uncommon in the general population with an incidence of 1.00 per 100,000 person years, some groups are at an elevated risk of anal cancer including

gay men living with HIV, relative risk up to 50 (incidence 100 per 100,000py in some studies)
heterosexual men and women living with HIV, relative risk 10 or more (incidence 20 per 100,000py)
HIV-negative gay men, relative risk 5 or more (incidence 10+ per 100,000py)
Other groups at higher risk include people who have taken immunosuppressive drugs following organ transplant and women with previous anogenital dysplasia/abnormalities (approximately 10 per 100,000py)

Approximately 85% of anal cancer is caused by the human papilloma virus (HPV). HPV16 is by far the most common cause, accounting for 90% of all HPV-related anal cancer.

In 2016, Positive Life conducted a community-based Anal Cancer Awareness Survey, which was published as a community report, ‘PLHIV and Gay Men’s Awareness of HPV Related Anal Cancer’.

HIV complex care and ageing in NSW

In 2013, Positive Life and the South East Sydney Local Health District (SESLHD) HARP Unit developed a discussion paper. This was a background tool to assist HIV Complex Care and Ageing Health Care Forum participants to better understand and focus on the clinical and service needs of people living with HIV who are ageing with complex care needs.

HIV Complex Care and Ageing in NSW – PLNSW report