Hepatitis B Voices Australia - New advocacy group

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Dear all,

I am really excited about our newly incorporated, independent non-profit Hep B Voices Australia (HBVA), which seeks to support, accurately represent, and amplify the voices of the Hepatitis B affected community. We will focus on furthering the interests of the affected community in all aspects that affect them, including in the scientific, clinical, and policy spheres.

HBVA is unique in that we are wholly led by people with lived experience of Hepatitis B. We believe this is a fundamental aspect for developing trust with people living with chronic hepatitis B, and necessary for driving effective change that will truly benefit the affected community.

We are open to partnering with everyone that wishes to respectfully engage with the affected community and shares our passion for eliminating the impacts of chronic Hepatitis B in our society.

As a board director and current secretary of HBVA, I see this working well with HepBCommunity.org. I see HepBCommunity.org as being a place to become properly informed and get support from peers/experts, while HBVA will be a platform for the affected community to actively make change in society. We’re hoping our forum users here (particularly Australians or those living/working in Australia, I’m looking at you @Caraline, @Elton, @Patricia, @dane, @kimbopumpkin, @JOANNEinAUS … :slight_smile:) will be active participants in this new initiative.

Stay tuned for more news, and our launch event later in the year.

TT

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Looking forward to hear more about this.

Thanks Thomas

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Happy to be involved when time permits - look forward to hearing more!
Cheers

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Well done, Thomas. Looking forward to seeing how this progresses.

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This is great and lovely @Dr. Thomas. It will indeed foster communual trust among the hepatitis B community.
I run a similar imitative here in Nigeria. Although patient led (by me), but it has non-patients (Physician, Pharmacist, Nurse, Medicl Lab Scientist) who share my vision for the hepatitis B community.
It’s indeed been an interesting and motional journey, especially seeing that patients who are on TDF within our community who find it difficult to sustain therapy get some respite. As a community pharmacist, I’ve been able to negotiate discounts for our members. It’s indeed a rewarding one for me. So, I can perfectly relate with your HBVA.
One more thing. I must say the Hepatitis B community.org has been a blessing to me, and by extension my community members here in Nigeria. A lot of troubling questions from my community members I have been able to put clarity to through this platform.
Thank you once again and to everyone here. Ofcource, the Hepatitis B Foundation, Tim. and Joan Block. I call them my American parents. My hepatitis B journey as a patient since my contact with the Foundation has been awesome. God bless you.someday, I hope to meet them in person, look them in the eye and tell them how much they have imparted my life.

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Amazing news Thomas! Congratulations to you all. This is such an essential development, so excited to see what Hep B Voices will achieve.
Cheers

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Thank you @Prince_Okinedo, @jennifer.maclachlan, @Elton @Caraline and @kimbopumpkin for the kind words and your engagement. I really appreciate it.

@Prince_Okinedo: We’d love to learn a lot more about the issues that have come up with your group and how you’ve dealt with them to help us prepare for our future. I’m glad this community has helped, I definitely see them both as complementary aspects to help people affected by hepatitis B to be supported and change the world.

P.S. I’m sure Tim and @Joan_Block would love to meet you sometime too :slight_smile:.

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@ThomasTu , we have met several challenges as a hepatitis B Community. Most promiment and challenging one has been difficulty accessing hepatitis B-specific healthcare. From the knowledge gained through the Hepatitis B Foundation and from this platform, I realized a lot of our healthcare providers have very poor knowledge about managing hepatitis B infection. If the physicians don’t have good knowledge, then the patient community suffers. Realizing this, I decided to identify WILLING GPs around us, create awareness and educate them on best practices in the management of hepatitis B. This is how we were able to co-opt two doctors to volunteer with our initiative.
In line with Bringing Hepatitis B care Closer to those who are infected or/and affected, we are planning a Bposium to build capacity among community Pharmacists in my State to position them as primary care providers in screening, vaccination and initiation of treatment. Will you be kind enough to be part of our Bposium as one of our guest speakers @ThomasTu ? This will be a great booster to the hepatitis B community in my state.
I look forward to a positive reply.
Thanks.

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Dear @Prince_Okinedo,

Thank you for asking me, I would be glad to consider your invitation to speak. Please send me the details in a private message here.

Thomas

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Thank you very much @ThomasTu for obliging my request. It means a lot to me and the HBAi. I’d you the details once we are done with schedules for guest speakers.
Once again , thank you.

Prince O Okinedo
Team Lead
Hepatitis B Advocacy Initiative

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Wow, congrats @Prince_Okinedo for the good work you are doing for your nation. Honestly I also wish to have such an initiative here in Kenya where those infected with HBV Can easily air their voice and feel cared for. But my challenge is just that I’m not a medic n explaining some medical terms are not easy.

Truth be told, there is no much information about HBV to most physicians. I think a special attention on how to reach out the affected percentage population especially in Africa should be addressed. Taking an example of what happened to me, a doctor who was in a hurry to sneak out of the hospital to his personal issues is who attended to my case.

By then, had only tested Hbsag+ and a liver function test are only the Lab tests I had. These are what he used to place me on therapy little did I know😭

Today, thanks to this community have learnt alot about HBV n that not all HBV patients are candidates to the drugs up until all the possible tests are done for better decisions.

Thanks so much @ThomasTu for coming up with this community may the Almighty grant you much wisdom you need to help us and many others.

In the meantime, l’m banking here for more insight with the hope of getting knowledge and more information on HBV to help my people as soon as I can hoping to get support from the team when God make it possible someday?

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Dear all,

We are now looking for additional board members for HBVA. We look forward to people applying for this great initiative and help us amplify the voices of the affected community in Australia. Feel free to ask any questions about this position in this thread.

Please see below for details:

Hepatitis B VOICES AUSTRALIA Board Member - Expression of Interest

Position Title: Board Member​

Location: Australia

Tenure: 2 years plus eligibility for re-election.​

Remuneration: Unpaid. Small funds available for annual Board professional development.

About Hepatitis B Voices Australia

Hepatitis B Voices Australia is an independent, non-for-profit community led organisation that supports, represents and advocates for the health and well-being of people affected by hepatitis B in Australia. Hepatitis B Voices Australia launched in November 2022, and we are a ‘for community, by community’ wholly led by people affected by hepatitis B.

Our vision

The voices of people living with hepatitis B will be central in the response to hepatitis B and eliminating its impacts.

Our purpose

We amplify the voices of the affected community to eliminate the impacts of hepatitis B.

Our values

Lived experience

Equity

Diversity

Collaboration

  • Respect
  • Transparency

Our operations

Our operations include advocacy and policy development, research and training, community engagement and support as well as consultancy.

Board responsibilities

The Board is responsible for overseeing and providing strategic direction to the organisation in accordance with Hepatitis B Voices Australia constitution, charter and the law. These include oversight of organisational operations, development strategic vision and objectives, legal and financial accountability, fundraising, advocacy, governance and risk management. Board members collectively bring diverse lived experiences and expertise and independence to provide sound and authentic governance. Board members exhibit Hepatitis B Voices Australia’s values and ethos to ensure the organisation prospers and fulfills its objectives.

Expectations

  • Commitment to Hepatitis B Voices Australia’s vision, purpose and values.
  • Act in the best interest of Hepatitis B Voices Australia irrespective of personal or professional interests or affiliations and in compliance with its Code of Conduct, laws and policies.
  • Declare and manage any conflict of interest in a timely manner.
  • Understand the Board’s roles, responsibilities, performance and financial and legal obligations to be able to actively contribute to the Board and organisation to meet its Strategic goals.
  • Contribute to the development of organisational governance and policies.
  • Contribute to organisational Strategic planning, relevant subcommittees and execution of various tasks.
  • Communicate in a transparent, professional and respectful manner with the rest of the Board, stakeholders and communities.
  • Adequately prepare for meetings, including reading meeting papers prior to all meetings and contribute to meeting discussions.
  • Attend all Board meetings.
  • Uphold strict confidentiality with respect to all Hepatitis B Voices Australia matters considered by the Board.
  • Commitment to serve a minimum two-year term [term can be extended]
  • Comply with Director’s legal duties and legislations set by The Australian Charities and Not-for-profits Commission, The Australian Securities and Investments Commission and other relevant legislations.

Selection criteria

Hepatitis B Voices Australia invites expression of interest from individuals who are interested in contributing as a volunteer Board member and who meet the following skills and attributes:

  • Lived experience of hepatitis B or from communities affected by hepatitis B [essential]
  • University level qualifications and/or equivalent experience
  • Experience and expertise in one (or more) of the following areas:
  • Not-for-profit Board governance including Strategic leadership and risk management [desirable but not essential]

Financial literacy – knowledge and experience in organisational financial reporting (including Cash Flow statements, Balance Sheets) and other relevant financial metrics

Legal expertise

Donor and fundraising strategies

Media and communications engagement

Willingness to undertake all relevant on-boarding screening checks including a police check and working with children check.

Time commitment

Hepatitis B Voices Australia’s Board meets monthly (except December) for approximately 1.5 hours in the evenings via online conferencing.

  • All Board members are required to participate in relevant Board committee(s) meetings as required.

How to apply

Join a passionate and dedicated team and contribute to improving the lives of communities impacted by hepatitis B. Please send your resume and a one-page cover letter addressing the selection criteria to Nafisa Yussf, Board Chair at info@hepbvoices.au.

Application deadline: Sunday 28th May 2023.

Short listed candidates will be interviewed by the Board.

How will I be supported if I am successful?

The Board Chair will individually meet with you to brief you on Hepatitis B Voices Australia’s Strategic Plan. You will be provided with a support person from the Board from existing Directors to support your integration in the first 3 months.

Thank you for your interest in Hepatitis B Voices Australia. For further information, please visit https://www.hepbvoices.au.

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Dear all (particularly Australians!)

I wanted to just reiterate that the application deadline for joining our team is in 10 days! We’d love to hear from you.

Sharable information here: https://www.hepbvoices.au/_files/ugd/5bc061_1c91d6c7dde444efa2c185ae0e909e05.pdf

Thomas

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Hi Thomas,

I missed this,I’m able to still join?
Please let me know.

Thanks