Join us for CHINWAG: Positive Connection

May 19, 2020

***  CHINWAG has now concluded  ***

This is a safe, inclusive and dynamic virtual space where every Friday, for one hour, the ever fabulous Vanessa Wagner will be hosting a Zoom video conference event called CHINWAG: Positive Connection with a team of HIV Peer supporters.

  • 5:00-6:00 pm (Brisbane, Canberra, Melbourne, Sydney)
  • 4:30-5:30 pm (Adelaide, Alice Springs, Darwin)
  • 3:00-4:00 pm (Perth)

CHINWAG: Positive Connection aims to create a fun space for people living with HIV to have a yarn, unwind and come together.

THANK YOUS

Over 12 weeks the series of events has been wildly popular exceeding all our hopes for the project and we are immensely grateful to you for spending your Friday evenings with us and creating such a warm, open and supportive space.

Chinwag would not have been possible without our incomparable host, along with an amazing stable of special guests, each of whom brought their expertise, passion, and generosity to the event, giving their time to help our community through COVID-19:

  • Friday 22 May: Inaugural meeting with Vanessa Wagner
  • Friday 29 May: Christopher Brett-Renes (Psychosexual therapist, health educator and sexual health/HIV researcher)
  • Friday 5 June: Joel Murray (ACON Senior Manager of the community health programs team, which includes the alcohol and other drugs program and needle syringe program)
  • Friday 12 June: Brent Clifton (Project Coordinator of RISE study at Kirby Institute UNSW)
  • Friday 19 June: Associate Professor Edwina Wright (Infectious diseases physician & clinical researcher at The Alfred and Burnet Institute)
  • Friday 26 June: Nic Holas (HIV activist; campaigns director for Change.org Australia; co-founder of The Institute of Many)
  • Friday 3 July: Vikas Parwani (Solicitor of The HIV/AIDS Legal Centre – HALC)
  • Friday 10 July: Michelle Tobin (Community Advocate for the well-being and human rights of Aboriginal and Torres Strait Islander people in NSW)
  • Friday 17 July: Greg Owen (London-based HIV advocate and co-founder of I Want Prep Now in the UK; PrEP Lead for Terrence Higgins Trust)
  • Friday 24 July: Jules Kim (CEO of Scarlet Alliance)
  • In July-August, Chinwag will break for 4 weeks
  • Friday 28 August: Professor Sharon Lewin (Inaugural Director of the Peter Doherty Institute for Infection and Immunity)
  • Friday 11 September: Bruce Richman (Founding Executive Director of Prevention Access Campaign)

For any questions regarding this event, contact Charlie Tredway (Project Officer; Community Engagement) via email on charlie@napwha.org.au

MORE THANK YOUS

We had incredible team of HIV peer supporters from across Australia join us each week to provide valuable lived experience, one-on-one support and linkage to care:

  • Sarah from Living Positive Victoria
  • Glenn from Queensland Positive People
  • Ruan from Bobby Goldsmith Foundation
  • Neil from Positive Life NSW

We also would like to thank ViiV Healthcare for their support to help bring this initiative to life. It has been an honour getting to spend this time with every single person who attended.

Professor Sharon Lewin and Bruce Richman join Chinwag: Positive Connection

This is an initiative which is responding to a NAPWHA survey in April 2020 where we looked at the impact of COVID-19 on people living with HIV. From the 150 participants, the key things that stood out were the challenges of isolation and the need for meaningful interaction. 65% of participants selected Social Connection and 41% of participants chose Mental Health support as two of their most pressing needs right now.

This activity was made possible with the support of ViiV Healthcare Australia

Webinar on Patient Based Evidence: Using qualitative research for PBAC/MSAC

August 21, 2020

How can ALL people (consumers) have a voice in PBAC and MSAC processes?

In this webinar, hear from Dr John Rule (NAPWHA Senior Research Manager) on the importance of Patient-based Evidence: Using qualitative research.

“[People living with HIV have historically] been pairing people up to help another person develop their health literacy. We are playing with a similar concept in terms of our engagement in research. We [communities of consumers] need to develop a research literacy ourselves, and we do have to learn about how the science operates, and the role of qualitative research in sometimes countering what science might assume, but also adding to science.”

In a 3-part webinar series, the Patient Voice Initiative invited various patient groups and communities wanting to know about qualitative research for reimbursement decisions in Australia. This included NAPWHA, who participates sporadically in consumer hearings to the Pharmaceutical Benefits Advisory Committee (PBAC) to better inform them of key issues and evidence from people living with HIV.

Watch the video

The webinar (above) from Friday 21 August 2020 focused on answering questions about qualitative research for submissions to the Pharmaceutical Benefits Advisory Committee (PBAC) and Medical Services Advisory Committee (MSAC).

In this video, hear from:

  • Dr Stephen Holden (Adjunct Professor, Macquarie Graduate School of Management) speaking on What is qualitative research and what can it do?
  • Dr John Rule (NAPWHA Senior Research Manager) speaking on Patient-based Evidence: Using qualitative research [download the presentation slides PDF]

Find out more about having a voice in the PBS

 

Patients want to be involved. Patients need to be involved, and patients are more informed now than they have ever been.

Never has there been a more important time than now to have a more inclusive and consultative environment to ensure that the people of Australia are cared for, listened to and part of the conversation.

– Kathy Gardiner (metastatic melanoma patient)

What is the Pharmaceutical Benefits Advisory Committee (PBAC)

The Pharmaceutical Benefits Scheme, known as the PBS, is the Australian Government’s program to make medicines affordable. If a medicine is listed on the PBS, it will be sold at a really reduced price or available free under certain conditions.

Because the amount of taxpayer funding available for medicines is limited, to be listed on the PBS, a medicine must be assessed as being good value for money. This assessment, known as a health technology assessment, is done by the Pharmaceutical Benefits Advisory Committee (PBAC) who are an advisory committee of the Australian Government that primarily makes recommendations to the health minister.

What does the health technology assessment (HBA) do?

To assess whether a medicine is safe, clinically effective, and cost-effective compared to an existing treatment, PBAC uses a process called health technology assessment. This is a type of policy research used in more than 30 countries to assess the value of a medicine using recognised scientific processes and robust evidence. PBAC assessments take 17 weeks.

What you pay for PBS medicines

To help meet the cost of the scheme, you pay a proportion (a ‘co-payment’) for your PBS medicines and the Government pays the rest of the cost. The Australian Government subsidises medicines that are necessary to maintain the health of the community in a way that is cost effective. Community need and/or benefit are also considered.

How does PBAC work

The Pharmaceutical Benefits Advisory Committee is made up of doctors, health professionals, health economists and two consumer representatives; Jo Watson and Bel Harper. Jo is also Deputy Chair, with Professor Andrew Wilson as the Chair.

The quick guide to how medicines are listed on the PBS

What is the Medical Services Advisory Committee (MSAC)

The Medical Services Advisory Committee (MSAC) is an independent committee established by the Australian Government Minister for Health who appraises new medical services proposed for public funding.

It provides advice to Government on whether a new medical service should be publicly funded (and if so, its circumstances) on an assessment of its comparative safety, clinical effectiveness,cost-effectiveness, and total cost, using the best available evidence. Amendments and reviews of existing services funded on the Medical Benefits Schedule (MBS) or other programmes (for example, blood products or screening programmes) are also considered by MSAC.