ARTICLE: The Lived Experience of Chronic Hepatitis B: A Broader View of Its Impacts and Why We Need a Cure

Hi all,

For your reference and interest, @Joan_Block, @Suwang88, @chari.cohen, @MarkDouglas and I wrote a paper earlier this year about various impacts of Hepatitis B infection that we thought were being missed in the research and medical field.

The paper can be accessed for free here or here.

Would love to hear any comments you have on it.

Cheers and happy holidays to all,


Thanks for sharing the link Thomas. It was very inspiring and enlightening to participate with you in preparing this paper for publication. It’s one of the few papers (if not the only?) published by people actually living with chronic hepatitis B - a scientific researcher, a physician, and a nurse advocate!!! And of course Chari Cohen who has dedicated more than 20 years as a public health scientist leading programs to improve HBV education, screening and linkage to care. Although she doesn’t live with HBV, she certainly cares deeply about us. And there are many, many more professionals who have dedicated their lives to treating and searching for cures. Thomas - and all of us - hope that these folks will join this community to share their insights and support!!


How do the estimate of 300 million people CHB globally get figured? I seen estimates between 250-350 million CHB globally, depending on the article.

I read articles where only 20% knew about their infection. That means 50-70 million are counted for. So does that mean, 200-280 million that do not know the s a “made up” number?

If 800k people die annually from hep b related deaths, is this figure from known infected numbers or estimated global number, when they state 15-40% of CHB will die from liver related deaths?

Just wondering if anybody has any insight or thoughts on it

Thank you


Hi Johnny,

These are great questions. Mostly the number gets cited due to a nice simple number that is provided by a epidemiological modelling study (the most recent is this one - which is paywalled so you’ll just have to trust the abstract). Basically a whole lot of models and consultation of many studies goes into it to figure out what the rate of diagnosis is from that and the number of cases we do know, calculate out how many there are in total. It’s a somewhat imprecise method, but gets a decent ball-park figure. It definitely isn’t “made-up”, but a well-informed estimate.

The 800k deaths are total estimated global number and includes those who don’t know they are infected.


Thanks for calling out our article Thomas! Thanks for leading the effort, and it was great working with you on this. Really important for the patient experience to be incorporated into research efforts and the clinical trials that are ongoing.
If there are people who are interested in learning more or potentially being part of advisory groups, there are efforts in getting patient voices to provide input to industry. Hep B Foundation will be helping to organize some of these efforts.

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