HIV|The Melbourne HIV Cure Consortium

Why a cure for HIV is needed

There are 36.7 million people living with HIV worldwide and for many it is now a manageable condition with antiretroviral treatment. In 2016, close to 20.9 million people were receiving antiretroviral therapy, which has saved many lives. However, the healthcare costs of maintaining HIV treatment are becoming more and more substantial, estimated to reach $19 billion by 2030.

In Australia, HIV prevalence is relatively low and people living with HIV have good access to treatment. However, in living longer, these patients have increasingly more complex health problems, estimated to cost the Victorian economy tens of millions of dollars each year.

Finding a cure for HIV – or a way for patients to safely stop antiretroviral therapy and keep their virus under control – will have a very significant global and local economic and social impact. The main reason cited by scientists for why HIV cannot be cured is because of HIV latency, or when the virus ‘goes to sleep’ in specific immune‐fighting cells called resting T‐cells.

Thanks to funding from the DHHS, working closely with affected communities, key research institutes specialising in HIV based in Melbourne including the Doherty Institute, The Alfred Hospital, the Burnet Institute, RMIT and Latrobe University have combined their multi-disciplinary expertise to form the MHCC and make Melbourne a world-leader in HIV cure research.

Aims of the Consortium

• Build scale in world‐leading HIV cure research and training through innovative interventional clinical trials.
• Conduct fundamental, clinical and community-based research for an HIV cure.
• Build capability in translational activities including drug and diagnostic discovery.
• Strengthen partnerships between HIV cure researchers across Victoria and related key disciplines such as transplantation, vaccination, epigenetics and drug development.
• Leverage competitive grant funding.
• Establish a Victorian HIV Cure Research Community Advisory Board.

With the initial funding provided by DHHS, Consortium activities will focus on developing significant Melbourne based clinical trial(s) that will engage biomedical and social researchers. As additional funding is secured, the Consortium’s activities will expand.

It is anticipated that the Consortium will ultimately support investigator-initiated and industry-sponsored drug development and clinical trials. Funding will be used to support the following main activities:

• Drug screening in vitro
• Biomarker evaluation
• Clinical trials

Activities of the Consortium

Current activities under the Consortium are made up of three components:

• Community Advisory Board formation and training.
• Small grants scheme – annual process for grants between $10,000 and $20,000 (for any type of study related to HIV cure including social research, community engagement, community literacy, early discovery, assay development (up to $60,000 per annum will be distributed).   
• Large grants of maximum $450,000 will be allocated to clinical trials only. Trials must be interventional and have multiple sites. This funding will be used to leverage extra investment.

Community Advisory Board

The Community Advisory Board (CAB) is a group of people living with HIV and other interested community members who provide important community input into the Melbourne HIV Cure Consortium (MHCC) processes and activities.

Mission

The mission of the CAB is to integrate community perspectives into HIV cure research to foster meaningful advances in the finite treatment of people living with HIV and AIDS.

The CAB provides an opportunity for affected communities to:

• Forge a viable partnership that will lead to improved knowledge of HIV and AIDS and potentially an HIV cure.
• Promote ethical research purposes and practices.
• Ensure relevance and acceptability of research performed by the MHCC. Voice potential concerns regarding specific studies, their development, potential risks for participants, implementation and outcomes.
• Better understand research processes and new scientific findings.
• Give guidance on complex issues including those related to the accrual and retention of trial participants. CAB members will establish mechanisms to facilitate people living with HIV outside of metropolitan Melbourne to participate in HIV cure research.
• Provide advice on research priorities for HIV community including social research.

To fulfil their mission, CAB members will be offered scientific and leadership training based on their specific needs and their time will be compensated.

Composition

The CAB is composed of five members selected based on the interest and expertise in HIV cure research. The CAB strives for its membership to reflect the demographics of the HIV epidemic in Victoria and Australia, stressing inclusion of traditionally underserved communities. CAB membership is open to persons living with and affected by HIV and AIDS, representatives from the private sector, local and state health departments, community-based organisations (CBOs), HIV service providers, educational institutions, and others working or volunteering in the HIV and AIDS field. The majority of members will be openly living with HIV and AIDS (three persons). 

Members

Craig Burnett (Chair)
From having attended the HIV cure symposium at the AIDS2016 conference in Durban, Craig developed a keen interest in HIV cure research. As someone living with HIV, he is interested in making sure HIV cure research is being conducted ethically for affected communities. The section of the community he has close contact with is through the facilitation of the Gen Next youth group for people living with HIV. He is also well connected to the broader community of people living with HIV from my work as event organiser for TIMelbourne.

Daniel Santos da Silva
Daniel is from the Brazilian capital, Brasília-DF. He graduated in mathematics from UNIPROJEÇÃO and worked for three years as a teacher in public schools in Brasilia. He is also trained in English by the CIL (Centro Interescolar de Línguas) as a second language. After losing his mother in a serious accident, he came to Australia with the purpose of improving my English and being able to do my Masters in Education in one of the Melbourne universities. Daniel is pleased to join the Community Advisory Board as by contributing to the cure for HIV and helping people living with HIV, he is helping himself as well.

Heather M
Heather worked in community health on various health promotion projects before joining the sector. She is currently the Peer Engagement Coordinator at Positive Women Victoria. Heather’s role also involves engaging with marginalised communities including women from CALD backgrounds, rural and regional areas to inform various research programs for Positive Women Victora. Part of her role also involves facilitating tailored peer support for women living with HIV. She coordinates volunteer peer support training programs, research, and outreach group support. Heather holds undergraduate study from Monash University and is also currently completing a post graduate qualification at the University of Melbourne.

Bev Greet
Bev was diagnosed with HIV in 1984, when she was the first woman to be diagnosed at Fairfield hospital.  In 1985 she joined the Positive Friends group, when she was the only woman.  In 1988 she co-founded Positive Women Victoria, has since been in governance positions for many years and a member of numerous peer support-based organisations. She was a founding member of People Living with HIV/AIDS Vic (PLWHA).  She was a founding member of the National Association of People Living with HIV/AIDS, including FemFatales, founding member of Positive Aboriginal and Torres Strait Islander Network (PATSIN), founding member of International Community of Women Living with HIV/AIDS (ICW), and founding member of Global Network of People with AIDS (GPN+).  In 1999 She was awarded an OAM for voluntary service to Women living with HIV/AIDS.  Bev is an Aboriginal woman and has worked in Community Controlled Aboriginal sexual health for 25 years.  In 2014 she was awarded the Rodney Junga award for services to Aboriginal and Torres Strait Islander sexual health.  In 2016 she was awarded life membership of Thorne Harbour Health (formerly Victorian Aids Council).

Adam Ehm (he/him)
Adam is a member of the Positive Speakers Bureau, and part of the Delaney Community Advisory Board (DARE-DAB) for HIV cure research and was the past President of Living Positive Victoria. He first became interested in cure research through participating in a digital think tank for HIV cure, which resulted in the development of the HIV Cure website. Adam wants to ensure that Meaningful Involvement of People living with HIV/AIDS (MIPA) is embraced within HIV cure science at every opportunity, whether it be through protocol development, recruiting of trial participants, or dissemination of results. He possesses a Master of Science in Medicine (HIV, STIs and Sexual Health) from the University of Sydney, together with undergraduate degrees in education and applied science from the Queensland University of Technology. 

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