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.
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?
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.
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.
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.
Thanks @ThomasTu@john.tavis for the overview.
Definitely no scientist here but can appreciate that seems lot of work and maybe politics for that drug to finally get into the hands of people.
How far can advocacy / funding go when there are some many cogs in the wheel?
Where should it be directed on the path?
And that’s without mentioning any government or subsidised costs.
You are absolutely correct that drug discovery is high risk and is influenced by a very large number of factors beyond just science, some political and many market-driven. Even a huge company cannot afford to have many drugs fail in late stage clinical trials given the enormous expense in getting to that point. That makes them conservative in their approach, which sometimes inhibits really novel ideas from advancing. Government funding of research is essential to get past this “valley of death” in drug discovery. We literally call the work we do in academic labs and small biotechnology companies “de-risking” a project to the point where major pharma feels they can take a risk on a new idea.
Advocacy is critical to maintain interest by the governmental granting agencies in a disease that translates to funding for cure research. The HIV patient community has done a spectacular job in making sure their needs were noticed, but unfortunately, the HBV community (patients, family, researchers, and clinicians) has been less effective. That’s changing through efforts of wonderful organizations like the Hepatitis B Foundation. Basically, we need to take a page from the HIV playbook and speak up to make sure our needs are addressed. This won’t be fast, nor will it be completely successful, but the HBF has shown in the USA that it helps a lot. For example, I’ve received 2 HBV cure research grants from the US government programs that were started due to lobbying by the HBF.
I do wonder - what we are competing against for funding and advocacy. There are so many different diseases out there, where intervention at an earlier stage prevents the cost of treatment later vs cost of the cure.
Is there a list out there of diseases / medical diagnosis with aggregated data of impacted people, current cost to treat, future cost to treat and the current investment of medical research. For me, Hepatitis B warrants it (maybe an internal bias). I did hear prostate cancer, could also do more in early diagnosis, advocacy and treatment, which could have similar numbers.
I wonder what we have also spent on Covid lately in comparison?
Unfortunately, you are thinking about this in a logical, compassionate manner. That is usually not the way politics works. The HBF compiled a comparison of the number of cases for HBV, HIV, and HCV and compared it to US NIH funding for the 3 diseases. There was a sharp negative correlation, with HBV having the largest number of cases and by far the lowest funding, HCV was in the middle, and HIV was the inverse of HBV. I don’t begrudge the research into HCV or HIV—they cause terrible diseases and folks with them need help, but some parity with respect to medical need would be nice.
The only way many of us see out of this difficulty is advocacy. Speak up! Be heard! Put your representatives on speed-dial and let them know what you think, and do it often. Organize rallies for HBV care and research. Work with the HBF and similar organizations where you live to present a united front for the HBV community when communicating with lawmakers. I’ve spent a lot of time working with the American Cancer Society, and they have started a related but financially separate (to stay within US law) lobbying organization called ACS-CAN. That is working for them. If we are quiet, we will be ignored. Unfortunately, that’s how the world works.
Interesting @john.travis. I’m not surprised by any means with how the world works.
Could you link me that study by the HBF please? You & this online community forum have taught me a lot these last couple of months. Appreciate the chat
I agree with everything that John has mentioned in his replies. I also want to add that in Australia, Hepatitis Australia (amongst others groups) are advocating for greater resourcing and policy changes on the federal level.
Just to follow up on your request, I’m not sure about the specific study by the HBF, but this paper here is based on NIH data and shows the huge disparity in funding and research between HBV and other infectious diseases (specifically Figure 2, note the y-axis is on a logarithmic scale): Hepatitis B virus infection as a neglected tropical disease.
In a recent issue of Nature, there was a section on infectious diseases too (including the funding and research intensity on COVID): By the numbers: counting the costs of infectious illness | News | Nature Index. I want to add that this article is really problematic in that the health impact that they graph is only the impact of acute viral hepatitis. They neglect the effect of chronic viral infection and the cirrhosis/liver cancer associated with that, so come up with a number 10-fold lower than they should. I have already written to the editors of Nature to complain about this; I’m not sure if I will get a reply or not.
Finally, there is a website that tries to account for global R&D funding: Policy Cures Research | Public Search. With the view I’ve shared, you can see that HIV takes the lion’s share of funding - Hep B takes in around 1% compared to what is invested into HIV.
Thanks for the info @ThomasTu
I noticed the WHO places targets, but what other role does it play with funding and advocacy?
And is there any other players similar?
With Hep B being more prevalent in certain countries, these aren’t necessarily the countries which can afford / or set up for academic research?
Would that be the same as HIV, as they have higher rates in multiple countries, thus more advocacy and funding?
Great questions, @JOANNEinAUS. I’m going to however leave this to advocates in the space to answer more comprehensively, because I myself am still new in trying to understand how everything fits together. Perhaps @Joan_Block@chari.cohen@jessicah@sdavidson@Suwang88 or @Carrie could provide some insight into this?
I am so glad to see this discussion. Thanks, @JOANNEinAUS, for engaging about this. I agree with all that has been said. There are still may challenges and reasons why HBV is under-prioritized and under-funded around the world. Stigma is one of them - because it is so stigmatized, most don’t want to talk about it, which makes advocacy very difficult - we need a strong voice. Can you imagine what would happen if all 300 million people with HBV could speak up?! Another issue is lack of knowledge and awareness - only 10% of people worldwide with HBV have even been diagnosed. And we have been told, by partners and government representatives, that the lack of a cure is standing in the way of governmental prioritization. Governments are putting lots of money into eliminating HCV, because there is a cure, and because corporations are assistant them. This is wonderful for those impacted by HCV.
Thanks @ThomasTu for linking me into this chat and @JOANNEinAUS thank you so much for raising this important issue! I could not agree more with @chari.cohen regarding some of the barriers we are facing but alongside the Hep B Foundation the World Hepatitis Alliance are committed to advocating for increased attention and funding for hepatitis B. The alliance is an international network with over 300 members in over 100 countries, including those countries that are most burdened with hepatitis B and we often see that the research does not take into account the experiences of people living on the ground in those countries. We are looking at undertaking more community based research to try and ensure that the voices of people living with hepatitis B are heard but as Chari said many people do not want to speak out due to the stigma. The World Hepatitis Alliance actually released a stigma report today which is centred on the experiences of people living with hepatitis B and includes a number of policy recommendations which you might be interested in - Stigma – World Hepatitis Alliance
Thanks!
