New challenges for PLWHAs and support services

These improvements were timely. From the effects of complicated treatment regimes to poverty and mental health issues, the needs of PLWHAs were changing significantly and becoming much more complex. The focus of the Support Program underwent a dramatic shift from home support and palliative care, to the development of services that would improve PLWHAs’ wellbeing and quality of life.

It was a lengthy and difficult process to formulate the right combination of drugs for each individual with HIV/AIDS. Although combination treatments virtually halted HIV replication and repaired the immune system, the side effects for people on these treatments grew progressively worse. Many people were not adhering to their treatment regimes or were even dropping them altogether due to treatment fatigue. Given the importance of adhering to treatment regimes for long-term suppression of the virus, great efforts were made through education and counselling programs to assist people with sticking to their treatment plans.35

Due to the impact of AIDS-related illnesses and treatment side effects, many PLWHAs were unable to return to a normal working life, and as a result poverty also became a major issue. The HIV Futures II report released by the Australian Research Centre in Sex, Health and Society at La Trobe University in March 2000 revealed that one third of PLWHAs were living below the poverty line.36 VAC/GMHC data was even more disturbing, demonstrating that of 126 Community Support clients, 98 per cent were living on or below the poverty line.37

Over 54 per cent of PLWHAs in 1999 were struggling to pay for daily food, making it difficult for them to access appropriate nutrition. Three meal sessions per week were held at the Positive Living Centre (PLC), and a pantry was also established to provide food to clients at cost price. HIV Services implemented a nutrition enhancement project to deliver fruit, vegetables and nutritious meals to PLWHAs one day per week.38 The pantry service continued to expand over the next few years, including a diverse range of fresh fruits and vegetables, as well as dietary staples. By 2004, it was assisting over 100 people per fortnight.39

Inevitably, with poverty and an inability to work came a restriction in the social activities of PLWHAs, leading to increasing isolation and loneliness. One Community Support Program client commented ‘People are stuck at home [and] the four walls become like a prison cell’.40 The combination of social isolation, anxiety about long-term health and wellbeing, and debilitating treatment side effects meant that mental health was an area of growing concern. La Trobe University’s HIV Futures II report revealed that significant numbers of PLWHAs were experiencing depression and anxiety, which correlated with the experience of VAC/GMHC staff and volunteers, who had witnessed increased demand for psychiatric services.41 In 2000, the Centre Clinic had one psychiatrist, Mark Arber, working on a regular weekly basis, but, reported Director Dr Nick Medland, this was ‘really just a drop in the ocean’.42

Under the leadership of Manager Nicci Rossel, the VAC/GMHC Counselling Services Program developed an integrated and ongoing program of therapeutic groups to provide education and psychological support to clients in an understanding group context. A workshop program called Negative Partners was established through collaboration between the VAC/GMHC’s Health Promotion and Counselling Services Programs in 2002 and run in partnership with PLWHA Victoria. Negative Partners provided HIV negative men who had positive partners with the opportunity to explore the ways in which sero-discordance could impact on intimate relationships.43 Other therapeutic groups developed during this period were reflective of the VAC/GMHC expanding its activities beyond HIV/AIDS and sexual health, including an Anxiety Group and ReVisioning Group, which aimed to help gay and bisexual men break patterns of violence, abuse and controlling behaviour in their relationships. This was the first men’s behaviour change program to be offered to gay and bisexual men in Australia. In 2007 a therapeutic group for women living with HIV was established and continued to be developed in collaboration with Positive Women.44 Therapeutic groups were found to be beneficial to both the organisation and to clients. They were cost-effective, well-attended and offered individuals ‘a less intimidating, more socially supportive’ environment in which to learn about their behaviour. Rossel reported that ‘by actively participating in groups, clients can diminish feelings of loneliness, isolation, depression, and helplessness’.45

The Community Support Program, part of HIV Services, also addressed growing social isolation and depression among PLWHAs through two new initiatives in 2000. The Social Isolation Project provided social outings for small groups of clients by obtaining free or discounted tickets from various organisations for activities such as cinema, opera, sporting and entertainment events. This project later became known as PK Tix after Peter Knight, the founder of the Support Program. Area Support Groups also established an improved social program for clients. The feedback was extremely positive:

The concert at the Arts Centre on Saturday night was an absolute delight for me and an HIV+ friend who is in a similar financially dire situation to myself. That was the first quality cultural outing I have been to for over 10 years.46

Community Support also began facilitating Drop-in Groups in 2000, with fortnightly lunches for clients and organised social outings. These events were funded and supported by the Area Support Groups. Through these initiatives, clients were able to access activities they could not otherwise afford and make new friends, improving their mental health and wellbeing and making connections with other HIV positive people. One Drop-in Group participant commented:

‘My saving grace! … These treats make life a little rosier especially at times when the virus seems to dominate life and bring gloom.’47

To David Williams Fund Vignette


References


PLWHA Vic Pride March 2007

By the mid-2000s the needs of people living with HIV/AIDS were changing significantly and the focus of the VAC/GMHC Support Program underwent a dramatic shift. PLWHA Victoria at Pride March in 2007.

Living Positive Victoria

Tuckerbag delivery

The Tuckerbag Meals Project addresses the nutritional needs of people living with HIV/AIDS. Coordinated in partnership with the Royal District Nursing Service, volunteers pack food and recipes, which are delivered to clients’ homes.

 

Drop In Group

Drop-in Groups were introduced in 2000, with fortnightly lunches and social outings for clients to make connections with other HIV positive people. Advertisement for a fundraiser for North Drop-in at the Laird Hotel, 2003.

Paul Evans

Man with AIDS at home

Restriction in the social activities of people living with HIV/AIDS often led to increasing isolation and loneliness. A man with AIDS in the solitude of his home, Fitzroy, 1993.

Photograph by Mathias Heng. State Library of Victoria, H95.190/7