In common with many other people with chronic diseases, people with HIV/AIDS often have to follow complex regimens of multiple medicines that have unpleasant and sometimes toxic side effects. In addition, they must take every dose, otherwise their infection will become resistant to the medication. Maintaining such complex and rigid regimens requires considerable knowledge and motivation. People Living with HIV/AIDS (PLWHA) Victoria has developed novel ways of ensuring that people  with HIV have access to the information they need to manage their medicines and maximise control of their HIV infection.

PLWHA Victoria

PLWHA Victoria was established in 1988 to provide services, alleviate hardship and improve the quality of life of people living with HIV/AIDS. The organisation employs a full-time Treatments Officer, Alan Strum, to provide information about HIV and its treatments.

PLWHA Victoria Treatments Officer Alan Strum

Treatments Information Service

Alan runs the Treatments Information Service, which provides information to people with HIV/ AIDS by email, telephone and face-to-face consultations. He receives 5–10 enquiries a week, and each enquiry takes anything from 5 minutes to 4 hours to deal with.

The enquiries cover a range of topics including  the HIV/AIDS disease process, transmission of the disease, HIV drug therapies, side effects, treatment holidays (stopping treatment for a while), switching treatments, drug resistance and staying healthy.

When providing information, Alan endeavours to give people a comprehensive understanding of the disease and its treatments, so they have the motivation and understanding necessary to persist with the treatments, and to take responsibility for their own health and well-being. He also endeavours to give people the knowledge and skills they need to make informed decisions about their health care, and to form collaborative partnerships with their healthcare providers.

Poslink newsletter 

PLWHA Victoria produces a bimonthly newsletter. The 24-page newsletter is a recognised source of up-to-date information for people with HIV and health workers alike. Half the newsletter contains news and information about PLWHA activities, social and political issues and happenings, reports of HIV/AIDS conferences, and personal stories. The other half is devoted to HIV health promotion and treatment information.

Alan writes the ‘Treatment Updates’ column, which keeps readers in touch with the latest research and information about HIV medicines, and alerts them to potential problems. It contains brief summaries in lay language of new and changed HIV treatments, and newly discovered side effects and drug interactions. The summaries are derived from reports of research conducted throughout the world, conference reports, and information released by pharmaceutical companies and authorities, such as the US Food and Drug Administration. Treatment interactive events Alan also organises three treatment interactive  events a year. These are stimulating events where people can socialise, be entertained, and learn about key HIV/AIDS health issues in a safe environment.

Topics covered recently include:

• the pros and cons of taking treatment holidays, and how, when and why to take them
• sexual dysfunction associated with HIV and its treatments, and ways of overcoming it
• changing lifelong habits, such as smoking, poor diet and sexual practices, in order to achieve a healthier lifestyle and a better quality of life.

Events are held on a Sunday afternoon in an inviting and comfortable cafe-bar with a good atmosphere and privacy. The event topics reflect the community’s current health and social needs.

Vanessa Wagner, a well-known and openly HIV positive drag-queen entertainer with training in HIV treatments, co-ordinates the events and makes sure they flow smoothly and are entertaining. She uses her drag-queen act to engage the audience, so they feel comfortable enough to participate and enjoy the event.

Each event opens with a few songs by an entertainer, comedian or band to relax the audience and get them interacting with each other.

After a break for food and drinks, a team of volunteers role-play a series of scenarios. The scripted scenarios are based on real-life examples, and each delves into a particular aspect of the health or treatment issue. For example, the medication breaks’ scenarios discuss the circumstances in which breaks may be appropriate, emphasise the need for them to be carefully planned and monitored, and highlight the need to prevent weight loss by maintaining good nutrition.

After each role-play, a panel of experts, which may include a doctor, dietitian and psychologist, discusses the scenario’s key issues, imparts relevant information and answers questions. Afterwards, the audience has the opportunity to mingle and talk personally with the panelists.

A detailed summary of the scenarios presented, including the panelists’ and audience’s comments, is published in the Poslink newsletter. This ensures that the health messages and information presented are disseminated as widely as possible to the PLWHA Victoria community.