Positive Life NSW

Bill Whittaker on the Treataware Project.

Growing scientific knowledge and the continuing development of better HIV antiviral treatments are allowing more people with HIV to live longer and to enjoy better health. We should of course celebrate this fact, but there are also other positive people who are doing it tough, and who are struggling with continuing health problems. The experience of living with HIV is obviously different for each HIV positive person.

We are still learning about the long-term challenges of living with HIV. Were seeing more evidence that HIV and its treatment often complicates general health planning and management, and vice versa. And as people with HIV grow older, they’re also going to also face the same health issues with ageing as the general population does.

We need to ensure that our health care system is structured and supported to effectively and efficiently provide health care to the Australian HIV population. -To keep as many people with HIV living as long – and living as well – as possible.

To have our health systems work best, the people who are going to use them need to be empowered with information and then supported to use that information. -To know the basics about HIV; to know the issues about when to consider treatment; and to know the best options for maximising their health and wellbeing.

And that’s what the Treataware project is all about – encouraging people with HIV to be informed, empowered and involved in their health care decision making.

Some may ask, why should they? Why not just leave it all to your doctor and swallow the pills? Fair question, but the evidence is that outcomes for many diseases, not just HIV alone, are markedly better when health planning and decision making are done in a partnership between doctor and patient.

So it’s in the interests of all positive people to be involved and to take responsibility for your health care planning. Doctors and other health professionals very much welcome this from their clients. Treataware is also very much about supporting that partnership between doctors and people with HIV.

The project incorporates three main elements:

1. the Treataware 1800 infoline
2. the Clinical Trials Website
3. the Checklist Guide (booklet) to getting the best health care

The Treataware infoline is a national, free, and confidential service, available 2pm – 7pm Monday on 1800 817 713.

Trained HIV treatment educators are able to provide information about treatment, health planning and related health issues to people living with HIV. We hope it will also be useful to doctors and other health professionals, for positive organisations and AIDS Councils to refer complex treatment and health questions to. We would also like people to know we are able to provide an interpreter via the national Translator and Interpreter Service (TIS). People who require an interpreter need to call 13 1450 and ask to speak with NAPWA. We have also linked in with the National Relay Service and our operators are trained in receiving calls from deaf, hearing and speech impaired people. The infoline will run as a pilot until Nov 2008.

The second element of Treataware the Clinical Trials Website has been something we’ve been working on for some time. Its purpose is to provide an independent, central information point about HIV clinical trials that positive people can go to. Here they’ll find information about clinical studies in easy to understand terms. The idea is not only to promote transparency about HIV clinical studies being done in Australia, but also to actually support clinical research.

Australia’s magnificent HIV research record is the product not only of all the dedicated scientists and doctors we have involved, but also the positive people themselves – Australia has one of the highest rates of research participation of any country in the world.

The final part of Treataware is the Checklist Guide to getting the best health care. This printed booklet takes people step by step through the key issues that they should consider in health planning and decision-making. It covers issues like when to start treatment, adherence, how often various clinical checks are needed, safe sex and injecting; and steps to support general health and wellbeing.

The checklist guide is very much intended to be used jointly between doctors and positive people as they work through their health planning. It will be available in hard copy through clinics and community organisations and also downloadable through the Treataware website.

To sum up, we at NAPWA believe that the Treataware project provides an important new addition to the HIV resources available to HIV positive people and we hope positive people will take advantage of it.

The Treataware infoline 1800 817 713 is available 2pm - 7pm Monday to Friday. The clinical trials database and the Treataware checklist guide can both be found at www.treataware.info

Bill Whittaker is the Treatments Portfolio Co-Convenor at the National Association of People living with HIV/AIDS (NAPWA)

**Watch the TREATAWARE video clip promoting the new HIV treatment infoline …where Tobin Saunders meets his alter ego Vanessa Wagner!