Prioritisation and funding for HBV research - how to help

Great videos - thanks for posting, Thomas.

As one of the speakers in the webinar mentioned, there is a lack of country-level prioritisation and funding towards HBV research.

It gives me even greater appreciation for our dedicated HBV researchers, who are clearly not receiving enough support and recognition from the wider community and government bodies.

It got me thinking - what are some effective ways members of the general public can contribute?

How can I, as someone who is not directly involved in research and development, help drive progress towards finding the HBV cure that we know is out there?

Some ideas that crossed my mind:

  • lobbying local Members of Parliament (a well written template letter could be useful here)
  • seeking support from strong advocacy groups, such as Australian Medical Association and Pharmacy Guild
  • donations (which foundations do people here suggest?)
  • awareness campaigns (social media? broadcasters?)

If anyone has any suggestions, I would love to hear them.

P.S. I don’t know how helpful my ideas are. I don’t know if any of my suggestions would make any impact at all! All I know is: HBV advocacy needs a stronger voice.

Dear Patricia,

Welcome to the community and thanks for your passion about this topic. I moved it to its own thread because these are such important points that I think it should be easily found.

The truth of the matter is I don’t know how to increase support for HBV research (if I did, I would definitely be doing it). There are patient advocacy groups out there that are doing this here in Australia (Hepatitis Australia and associated state branches, ASHM, ACHV to name a few) and more internationally (Hepatitis B Foundation being one of the most prominent, WHA, etc.). How to expand this awareness to the level of breast cancer or even HIV, I don’t know. I guess I started this forum and the patient advocacy to do what I could for this cause.

Would love to have more ideas on what to do, even if they are just vague strategies. @Revillp, @Suwang88, @sdavidson, @john.tavis, @Capucine: as a much more experienced people in this field, maybe you can weigh in?

Cheers,
Thomas

This requires a long-term advocacy effort with broad support among the constituency. In the USA, the Hepatitis B foundation worked for well over a decade by meeting legislators, NIH officials, public opinion influencers, etc. before significant increases in funding were committed by the USA research organizations. Having a high profile set of folks supporting the effort is key. In the USA’s case, it was provided by the strong backing of the research and patient communities to the HBF’s efforts.

John Tavis, PhD

Professor

Saint Louis University School of Medicine

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Thanks John for your input and welcome to the forum,

Sounds like a long road ahead with a large dose of patience, networking and steady effort.

I have been thinking that (in addition to the role this forum plays in supporting people with Hep B themselves) a more political/advocacy-oriented community-driven arm might arise from Hep B Connect. I hope this will eventuate as we gather more momentum.

Thomas

I think this could be a good role for HepB Connect to grow into. The HBF carries that load in the USA and is trying to do so elsewhere when it can, but ICE-HBV and the HBV meeting need to avoid overt political advocacy as their roles are science-based. Your idea seems complementary to the other ongoing efforts, and I support it.

John.

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