HIV FUTURES 4: state of the [positive] nation

Summary of Findings

About the research

The HIV Futures research program is the largest of its kind in Australia. It is designed to provide HIV, health and funding agencies and HIV positive people themselves with a two yearly picture of the overall health, well being and social situation of people living with HIV/AIDS (PLWHA).

The living with HIV team, in collaboration with a broad range of health and community organisations, distributed the HIV Futures 4 survey nationally in late 2003/ early 2004. The survey asked PLWHA about their health, use of antiretroviral, complementary and other treatments, use of information and support services, and their housing and financial situation. It also asked about sex and relationships, people’s social support, recreational drug use, work and financial situation and future planning.

The research team consulted extensively with PLWHA, HIV and health organisations around Australia in order to ensure that the survey was asking the most important questions in the most appropriate and useful way.

This is a summary of the major findings from HIV Futures 4. If you would like more detail, please contact us for a full copy of the report (see below) or you can download it from our study website.

Who filled out the survey?

The HIV Futures 4 survey was completed by 1059 HIV positive Australians from all states and territories. This represents around 8% of the Australian HIV positive population. This included 960 men, 96 women and 3 transgendered people. The majority of participants were Australian born (78%) with thirty one respondents of Aboriginal/Torres Strait Island origin. The participants’ ages ranged from 18 to 92 years. Around 60% were from urban areas of capital cities, while 13% lived in outer suburban areas, 17% in larger regional centres and 10% lived in rural areas.

Research results

HEALTH AND HIV

People were asked about their diagnosis experience, their general health and well being, as well as the impact of HIV on their health.

HIV Antibody Testing: 25% had received pre-test counselling or engaged in pre test discussion (24% of those testing positive in the last two years), and 53% received post-test counselling (70% of those testing positive in the last two years). Pre and post test counselling was most often provided by medical personnel and respondents were generally satisfied with the counselling they received.

Current Health Status: 48% rated their health as good or excellent and 62.3% rated their general well being as good or excellent. Almost all PLWHA had taken a CD4/T-cell test and a viral load test. 26% of respondents had been diagnosed with an AIDS defining illness, 11% in the last two years.

Health problems related to HIV: 36% reported experiencing lipodystrophy; 30% experienced weight loss; 68% low energy or fatigue; 49% had a sleep disorder; 32% experienced confusion or memory loss.

Other health conditions: 39% of respondents indicated that they had experienced AIDS related illness. 44% indicated that they had a major heath condition other than HIV/AIDS. The most common other conditions were hepatitis C, cardiovascular disease and asthma.

Hepatitides: 27% had at some point had hepatitis A, 51% had been vaccinated against hepatitis A. 31% had at some point been diagnosed with hepatitis B, of whom: 72% had cleared the infection 17% had ongoing infection and 2% had a chronic infection. 59% had been vaccinated against hepatitis B. 16% of respondents were hepatitis C positive and 5% of those with hepatitis C had ever had treatment for this.

Prophylaxis: 23% were currently taking prophylaxis for opportunistic infections.

TREATMENTS

Antiretroviral Therapy:  71% are currently using ARV, 87% have used ARV at some time. 71% commenced ARV on the advice of their doctor and most (64%) were using a combination of three drugs.

77% of those currently taking ARV reported that they experienced difficulties taking them of which the major problems were: remembering to take the drugs on time; side effects; transporting medication; and taking medication in public.

Side effects from ARV are still a significant concern for those on treatment with 50% reporting that they experienced these. The most common were diarrhoea, nausea, and fatigue.

77% believed that ARV means better prospects for PLWHA, while 6% believed that it is still too soon to tell. 39% believed combination antiretroviral drugs are harmful and 24% said the side effects outweigh the benefits of antiretroviral drugs.

47% of those currently on ARV have taken a break from ARV therapy. These breaks often resulted in improved well-being, but deterioration of clinical markers 50% saw their doctor before, during and after the treatment break.

30% of those that had ever used ARVs had had an antiretroviral resistance test. 75% of those tested found resistance to one or more drugs and 81% of those with resistance changed treatments

65% had not missed a dose of ARV in the two days prior to completing the survey.

Complementary Therapies: Complementary therapies tended to be used in conjunction with allopathic treatment. 52% used vitamin and mineral supplements, 17% used herbal therapies, and 28% used marijuana for medicinal purposes.

SERVICES

Health Services: For HIV specific treatment 45% saw a HIV GP/S100 prescriber and 33% saw an HIV specialist/physician. For general health care treatment 50% of PLWHA saw a HIV GP/S100 prescriber and 22% saw a non-HIV GP. For 55% of respondents these were different doctors.

Other Services: The services most often used at AIDS organisations included: treatment advice, social contact, peer support, counselling, advice on financial matters, advice on legal matters, and complementary therapies.

Information: The most important sources of information on treatments were HIV GPs/S100 prescribers, HIV specialists, HIV magazines and newspapers, HIV/AIDS organisation publications, articles in the gay press and HIV positive friends.

The most important sources of information on HIV management were HIV GPs, HIV magazine/ newspaper, HIV organisation publications, gay press, and HIV positive friends.

The most important sources of information on living with HIV were HIV magazine/ newspaper, publications from HIV/AIDS groups, HIV positive friends, HIV GP, and HIV specialists.

Publications: Gay and HIV press were accessed by large proportions of the sample, as were HIV community publications (particularly within their constituency area).

Involvement with AIDS Organisations: 72% had some contact with HIV/AIDS organisations, mostly receiving newsletters or being clients of these organisations. 10% were employees of AIDS organisations.

THE SOCIAL WORLD OF PLWHA

Contact with Other PLWHA: Most (93%) knew another PLWHA. 18% had a spouse/partner with HIV, 62% knew acquaintances with HIV. 78% spent at least some time with other PLWHA. 23% had been involved with the care of someone with HIV/AIDS and 81% said someone close had died of AIDS related causes.

Disclosure: Almost all respondents had disclosed their HIV status to at least one person, generally partners, close friends and family. For 55% of respondents, their HIV status had been disclosed to another person when they did not want it to be (30% in the last two years).

Social Support: The most import sources of social support were partners/spouse, pets, doctors, and close friends.

Mental Health: In the last six months 33% of respondents had taken prescribed medication for depression and 31% for anxiety. 35% had ever had a diagnosis of a mental health condition. 7% had had such a diagnosis in the last two years. 27% of all respondents had ever been diagnosed with depression.

Planning for the Future: 22% planned only one day at a time, while 51% planned at least one year ahead.

Relationships and Sex: Over one quarter (27%) of PLWHA were not having sex at present. 46% of PLWHA were currently in a regular relationship. Of those in a regular relationship 38% had a partner who is also HIV positive, 59% had an HIV negative regular partner.

38% of the respondents had anal or vaginal intercourse with a regular partner in the past six months. Condom use with regular partners was strongly related to the HIV-status of the partner.

58% of the sample had sex with casual partners in the past six months. 37% of the men reported that they always used condoms with casual male partners.

Information about the most recent episode of sex with a casual partner in the previous six months was provided by over half the sample. Vaginal or anal intercourse took place in 73% of these instances.

33.9% used a condom with the most recent HIV+ casual partner, 72% with a partner of unknown HIV status, and 78% with an HIV negative partner.

50% of PLWHA would prefer to be in a relationship with someone who is also HIV positive. 61% of PLWHA expressed some fear of rejection from potential partners if they tell of their HIV status. The majority of PLWHA (64%) felt HIV had a negative effect on their sexual pleasure.

Only 13% of PLWHA agreed with the statement I feel more confident about unprotected sex because of the new treatments. Very few PLWHA felt that new treatments make safe sex less important than it was (8%) or that undetectable viral load means HIV is unlikely to be transmitted (10%). However, 28% of PLWHA agreed with the statement If there was a vaccine which prevents HIV I would not practice safe sex.

Recreational Drug Use: Alcohol was the drug most commonly used by PLWHA (76%), and 48% use tobacco. Over two thirds of respondents reported that they had never injected illegal drugs and of those respondents who had injected illegal drugs approximately one half had done so in the last 12 months. Of PLWHA who reported injecting drugs, 98% had not shared injecting equipment in the past twelve months.

Approximately one quarter of respondents reported having missed a dose of ARV at some point as a result of using illegal drugs and 8.0% reported having had a bad experience as a result of using both illegal drugs and ARV.

HOME, WORK & MONEY

Accommodation: 33% owned or were purchasing house or flat, 36% were in private rental accommodation, 18 in public rental accommodation.

77% of respondents stated that their accommodation was suitable for their current needs. Of those who said their accommodation was unsuitable, the main reasons given were that it was too expensive, was too small and lacked privacy.

41% of PLWHA lived by themselves. 50% of PLWHA also lived with pets. 68% of respondents had access to a car. 40% had ever changed their accommodation as a result of having HIV/AIDS and 11% had in the last two years.

Employment: Slightly less than one half of respondents were currently in paid employment (43%), with more than half of this number being in full-time work. The majority of the remainder described themselves as either not working or retired.

Most respondents said they had either left their career or in some way reduced their career goals as a result of their HIV diagnosis.

58% reported that they have stopped work at some time in the past for reasons relating to having HIV/AIDS. Low energy level was the most commonly cited reason for this, followed by stress, depression or anxiety and poor health. Of those respondents who had left work, 47% had returned to work and this was most commonly for financial reasons.

Just over half of those respondents working said that HIV has had an impact on their capacity to perform their work duties. Most commonly respondents reported that they tired more quickly, that they had difficulty concentrating and that they have had to reduce their work hours.

43% of PLWHA currently in work had not disclosed their HIV status to anyone at their workplace, while 25% did not try to keep their HIV status confidential. The most common difficulties for those who do want to maintain confidentiality at work were gossip and explaining absences from work.

Finances: Over half of respondents identified their main source of income as a government benefit or pension. As well, more than one half of PLWHA reported experiencing at least some difficulty with meeting the cost of daily living: 68% had difficulty paying for clothing; 68% for utilities; 64% for housing; 56% for food; and 53% for transport.

44% of those on a government benefit had been assessed by a commonwealth medical officer. While this resulted in termination of benefits or change in conditions for few respondents, it caused distress for 65% of those assessed.

Poverty: 27% of PLWHA are living below the poverty line. Just under one quarter of respondents have a partner with whom they share financial resources and this protects some from extreme economic hardship. Very few respondents who are earning an income from paid employment reported incomes below the poverty line whereas around half of those on government benefits are living in poverty.

Discrimination: 12% experienced less favourable treatment in relation to accommodation, 5% in the last two years. 34% experienced less favourable treatment because of HIV in relation to health services, 17% in the last two years. 23% experienced less favourable treatment in relation to insurance, 4% in the last two years. 18% of hepatitis C co-infected respondents experienced less favourable treatment because of Hep C in relation to health services, 13% in the last two years.

Concluding Comments

While the overall picture for people living with HIV in Australia is optimistic, there remain clear patterns of health and social disadvantage that require ongoing policy vigilance and service provision.

Clinical issues such as co-existing health conditions, mental health problems and treatment failure continue to remind us that HIV is far from a simple and manageable chronic illness for many PLWHA. The high rates of poverty noted in the HIV Futures Surveys are yet to be significantly reduced despite broad and sustained community response. The experience of discrimination in health care and other settings alerts us to the continued need for education and active policy implementation as well as broad community sensitisation.

The increasing reliance on the clinical sector for information and support demonstrates, not only the need for sustained education and training among health care professionals, but also suggests that the (re-)medicalisation of HIV presents continuing challenges to the community sector.

We hope that these national surveys of PLWHA continue to provide a valuable tool to health care professionals, community sector worker, policy makers and PLWHA themselves to reflect on the diversity and complexity of living with HIV/AIDS.

Getting copies of the full report

If you are interested in receiving free copies of the full HIV Futures 4 report, or more copies of this brochure, please contact us at:

The Living with HIV Program Australian Research Centre in Sex, Health and Society 1st Floor, 215 Franklin Street, Melbourne 3000 Tel (03) 9285 5382 Fax (03) 285 5220 Email: hivfutures@latrobe.edu.au 

The HIV Futures Team

The HIV Futures 4 research team is Jeffrey Grierson, Rachel Thorpe, Mark Saunders and Marian Pitts. The HIV Futures 4 Study is part of the Living with HIV Program at The Australian Research Centre in Sex, Health and Society La Trobe University

These results are taken from the report:

J Grierson, R Thorpe, M Saunders and M Pitts (2004) HIV Futures 4: state of the [positive] nation, monograph series number 48, The Australian Research Centre in Sex, Health and Society, Latrobe University, Melbourne, Australia

© Latrobe University 2004

The Living with HIV Program is a part of the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University. The program conducts social research into the lived experience of HIV. This research is guided by the Australian National Strategies on HIV, the Living with HIV Reference Group and the ARCSHS Scientific Advisory Committee. All research conducted is approved by the La Trobe University Human Ethics Committee and additional institutional and community ethics committees where appropriate. The HIV Futures Studies are funded by the Australian Government Department of Health & Ageing.