People with HIV need informed, independent advice to make treatment decisions

Continuing improvements in HIV treatment are helping many people with HIV lead healthy lives, but some HIV-positive people may not be well-enough informed about the latest treatment options, the National Association of People Living with HIV/AIDS (NAPWA) has said in a statement to mark the launch of an innovative new HIV treatments information project.

“The benefits of HIV treatments are unambiguous, and there is growing evidence that starting treatment sooner rather than later leads to better long-term health outcomes, yet a substantial number of HIV-positive people are avoiding treatment because they may be unaware of the latest research, are concerned about treatment side effects or they don’t know where to go for up-to-date information,” said Bill Whittaker, NAPWA treatments spokesperson.

To combat this, NAPWA has established a suite of new initiatives to help positive people make good health and treatment choices. The Treataware project includes a national HIV treatment information line, a website and a printed treatment guide, all of which combine to markedly increase the range of information available to people living with HIV in navigating what can sometimes be a complex treatments and health landscape.

Recent research from the UK[1] has shown that large numbers of people with HIV delay starting treatment for too long, despite being advised by their doctors of the need to start antiretroviral [1]A medication or other substance which is active against retroviruses such as HIV. therapy. This delay increases their risk of developing serious illnesses and lessens their likelihood of getting the best response from HIV treatments. While treatments uptake in Australia remains fairly good, NAPWA has developed the Treataware project to support positive people in making sensible choices about treatments based on the latest scientific evidence.

The project is the first of its kind in Australia. “The Treataware information phone line has trained educators standing by, five hours a day, five days a week,” Whittaker said. “We’ve also developed Australia’s first searchable clinical trials website specifically for HIV, and a comprehensive checklist guide to getting the best HIV care, which will be distributed through doctor’s offices, clinics and HIV organisations. Together, these three initiatives represent an important step in making health and treatment information more accessible to HIV-positive people.”

Whittaker stressed that “the central aim of the Treataware project is to support a strong partnership between HIV-positive people and their doctors in health decision making. Learning the basics about HIV and treatment, knowing how to manage side effects, and working with your doctor to maximise your health and wellbeing – all of these are essential skills which keep people alive and well for longer. These are the skills the Treataware project is intended to foster.”

The project will be launched by Dr Jonathan Anderson, a leading HIV clinician and the current President of the Australasian Society for HIV Medicine (ASHM [2]Australasian Society for HIV Medicine. The peak Australasian organisation representing the medical and health sector in HIV/AIDS and related areas. ). “Decisions like when to start HIV treatment can be challenging, so this along with other health planning is best done collaboratively between doctors and patients. We know this approach works as there is a wealth of research showing health outcomes are better when a partnership approach to health care planning is taken.”

“But to make that partnership work, people need good information on the basics of HIV, about treatments, managing side effects and tips for taking medicines correctly, so patients feel involved and supported. The Treataware phone line, clinical [3]Pertaining to or founded on observation and treatment of participants, as distinguished from theoretical or basic science. trials website and treatment guide will be very welcome additions to the resources available for HIV-positive people in Australia. They will also be helpful resources for doctors involved in HIV to encourage their patients to use,” said Anderson.

The Treataware information line is 1800 817 713, available Mon-Fri 2–7 PM Eastern Standard Time. The clinical trials website is at www.treataware.info.  [4]