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 … ) will be active participants in this new initiative.
Stay tuned for more news, and our launch event later in the year.
Looking forward to hear more about this.
Happy to be involved when time permits - look forward to hearing more!
Well done, Thomas. Looking forward to seeing how this progresses.
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.
Amazing news Thomas! Congratulations to you all. This is such an essential development, so excited to see what Hep B Voices will achieve.
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 .
@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.
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.
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
Hepatitis B Advocacy Initiative
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?