NAPWA

Since 1997, the HIV Futures reports have provided important insights into the experience of being positive in Australia, and the latest instalment in the series is about to be issued. BRENT ALLAN wonders what it all means.

HIV Futures IV: State of the [positive] nation is the result of a survey of over 1,000 people living with HIV, from all walks of life and from all over Australia, conducted by the Australian Research Centre in Sex, Health and Society at Melbourne’s La Trobe University.

As the name suggests, this is the fourth in this series of reports into the Australian body positive. Like the previous reports, Futures IV is an indispensable snapshot of who we are, how we’re doing and the challenges we face.

The enthusiasm with which our community has embraced this important recurring investigation into our lives is impressive, as is the fact that so many positive people took the time to complete and return a forty-page questionnaire that poked and prodded at the deep recesses of their experiences of living with HIV/AIDS.

This report is vitally important for AIDS councils and the state and federal health departments, who use the information to better understand the lives of positive people and ensure that programs and services are delivered to the right people at the right times in the right locations.

But it’s just as important for people living with HIV/AIDS, as it provides a sense of who we are in relation to others with whom we share something in common, and thus a sense of what may be in store for us as individuals and as a community.

Good news, good health

Perhaps the best of the good news stories in the report is that nearly 50 percent of respondents rate their health as ‘good’ or ‘excellent’; and over 60 percent rate their general wellbeing in the same terms.

While these measures are by their nature somewhat ambiguous, our sense of our health and wellbeing represent two very important ‘states of being’ which obviously have flow-on effects on many other aspects of our lives. There is a relationship between these two measures — better health is related to greater wellbeing — but this isn’t always the case, and are these figures good enough? Why aren’t we feeling better? What are the things that are impacting upon our quality of life?

An overwhelming majority (87 percent) of respondents are currently using antiretroviralA medication or other substance which is active against retroviruses such as HIV. therapies or have used them in the past. Perhaps we can attribute our good health and wellbeing to the availability and success of these therapies. Or can we?

Over three-quarters of people currently taking antiretroviral therapies reported that they experienced difficulties taking them, and half the people taking them experience negative side effects.

Our complex and conflicted relationship with antiretroviral therapies is compounded by the fact that although the majority of us feel that treatments mean better prospects for HIV-positive people (77 percent), and while we are pretty good at taking our pills on time (65 percent), a substantial proportion of us turn to complementary therapiesA broad range of healing philosophies, approaches, and therapies that Western (conventional) medicine does not commonly use to promote well-being or treat health conditions. Examples include acupuncture, herbs, Traditional Chinese Medicine, etc. to delay the onset of illness, alleviate medication side effects, or boost our immune systems.

Most of us remain concerned over the future efficacy(Of a drug or treatment). The maximum ability of a drug or treatment to produce a result regardless of dosage. A drug passes efficacy trials if it is effective at the dose tested and against the illness for which it is prescribed. In the standard procedure, Phase II clinical trials gauge efficacy, and Phase III trials confirm it. of antiretroviral therapies. Almost two-thirds of us (65.2 percent) say we’re worried that our medication will stop working for us in the future.

More than a quarter of us have few treatment options remaining. Those of us with fewer treatment options remaining are less likely to say that we’re in good health, and more likely to have lower CD4 counts and higher viral loadA measurement of the quantity of HIV RNA in the blood. Viral load blood test results are expressed as the number of copies (of HIV) per milliliter of blood plasma..

Overall, it seems that many of us have a healthy sense of caution about antiretroviral therapies: although we accept them as vital tools in the fight against the virusA small infective organism which is incapable of reproducing outside a host cell. we want to use them wisely and when they are most needed. As a community, we seem to have a healthy level of scepticism about medical treatments — in other words we’re displaying signs of being wise, empowered consumers.

Healthy lives

What are we doing to increase our quality of life besides (cautiously) swallowing these pills and potions?

The most common activity we say we participate in is regular exercise, followed by healthy eating, sleep and compliance with medication. People who say they feel healthier tend to spend more time with friends, relaxing, and with their partners.

Almost everyone agrees that exercise, healthy eating and an optimistic outlook are important or very important strategies in maintaining our health and wellbeing.

For most of us, HIV GPs and specialists are our primary physicians (79.6 percent), but we still access information on treatments, HIV management and living with HIV from a much wider range of sources, including medical literature, the community sector, health professionals and peers.

Positive Living continues to be the most widely read HIV-related publication in Australia: 54.5 percent of positive people say they are regular readers.

One in five of us use the internet to find information about treatments, but we have a healthy scepticism about the quality of that material.

A number of respondents indicated that there were services they felt they needed but did not currently have access to — affordable complementary or alternative therapies (14.6%), peer support groups (11.7%), or services for positive people living in rural, regional and outer suburban areas (9.5%).

Get a life?

One — rather simplistic — way to interpret this report is to say that if you want to improve your sense of health and wellbeing, get some friends, a pet, a partner and an HIV-experienced treating doctor. In other words, get a life!

Easy to say, but for many of us, such simple solutions ignore the complexity of our lives.

Too many of us are living in poverty — nearly 70 percent struggle to pay for clothing, utility bills and rent, and more than a quarter are living below the poverty line. Too many are struggling with depression, anxiety and other psychological problems — one-third of us took medication for these conditions in the last six months. And too many of us face discrimination, stigma and abuses of privacy. Disturbingly, the most commonly reported discrimination comes from the health sector.

At a time when the federal government has resurrected plans to prevent people who are able to work more than 15 hours a week from accessing the Disability Support Pension, there are clearly still large numbers of positive people who are not working. The number of respondents in the workforce hasn’t increased in the last two years. Fewer than half of us are working. Most of us (58.1 percent) have left a career or in some way reduced our career goals at some time in the past.

Low energy levels, stress, depression, anxiety and poor health are all cited as reasons for stopping work. Of those of us who have returned to work, in most cases it’s because we needed the money, not because we felt better.

The picture that emerges from reading this report is that while the medical advances of the last decade have had a substantial effect, our medical health is only one part of the big picture. Our social health — our relationship to our communities, the levels of support we receive, our personal relationships and quality of life — is equally important.

Although for most of us our medical health has improved over the last few years, for too many of us our social health has not kept up.

• HIV Futures IV: State of the [positive] nation will be launched on 19 November 2004 at the Positive Living Centre in Melbourne. Copies of the report can be obtained from ARCSHS.

Brent Allan is the Manager of HIV Services for the Victorian AIDS Council and NAPWA Education Portfolio Convenor.