The data I provided is from 《The Lancet Regional Health - Western Pacific》. I have checked/compared the latest data on hepatitis B from the Chinese government, Chinese media, and Chinese medical platforms. I think the data from《 The Lancet Regional Health - Western Pacific》 is more reasonable (usually I will keep a certain degree of suspicion/distance for the data released by the Chinese government).
In addition, I am very worried about China’s food safety issues (edible plant seeds, land pollution, and irregular use of pesticides). I think this problem is one of the most serious problems in China at present, which will affect the short-term/long-term health of most Chinese people. I pay close attention to food issues because I am worried that unhealthy food will affect my hepatitis B status (I am an “inactive hepatitis B surface antigen carrier”). If you still have relatives/friends working and living in China, I kindly remind you that you should let them pay attention to China’s food safety issues.
Thank you for this offer to take on this important work. As @Stephenw mentions, there used to be a large Chinese online community that has since become much less active. There are also many trustworthy resources around in language (e.g., Chinese | 中文 | Hepatitis NSW just as an example) that may help.
I think what @Stephenw has mentioned is a great strategy - being the bridge between communities is really powerful. It expands the reach of information and it builds community resources (time, effort, tools, volunteers, etc.), so that we can build a common front and make more impact.
Regarding this, I wanted to give the scientists’ perspective on this. I am one myself and we have several promising pre-clinical approaches to target HBV. But just in terms of funding, there is just not enough investment to test all of these ideas and new approaches. This cannot necessarily come from private industry, as there is a lot of work (and therefore funds) between this idea and a product, as well as a lot of opportunities for this approach to fail. Public funding is necessary in these many of these cases to provide the development of new approaches without being tied to a profit-driven outcome.
Regarding the lack of a cure, much of this is due to resourcing and funding. Just to give you some perspective, HIV affects 10-times fewer people compared to HBV, but HIV gets 10- to 100-times more for R&D funding. These is still also no cure for HIV (though much better quality of life now for people affected). I am not saying that HIV does not deserve this funding, but Hep B also needs to be appropriately funded to this degree to make more and faster progress.
Exactly how to enable this is still something the field is struggling with. However, HIV came at it by activating the community - impassioned people affected by HIV telling society that it is not fair to not to treat it like an incredibly important public health issue. We scientists are doing this as best we can (I myself started this forum up from my own funds, also starting Hepatitis B Voices Australia as an advocacy body, all the while running a research lab trying to develop Hep B cures), but we only represent a small population - ~1000 people spread out across the entire world.
The affected community needs to come together to make change. The systems across world will not change just because we wish it, it does need a bit of a push. This forum and other advocacy initiatives are only the first step. We need the entire affected community organised and heading in the same direction at all levels.
Hi FUMIN,
Food safety is a worldwide issue. I am glad you are paying close attention. Any food safety issues in China affect people in Hong Kong and here in Australia,
as a lot of Chinese food products are imported from China.Thanks for the warning.
Cheers,
Stephen Wong
I am very happy to receive your attention/response. I believe that the HepBCommunity.org you created is of great significance to hepatitis B patients around the world (including but not limited to hepatitis B patients). I still insist that China needs HepBCommunity.org now.
I have carefully read your information and understood your views/positions as a scientist. You compared hepatitis B and HIV and let me know that there is such a big difference in funding, which surprised me. I would like to talk about my opinions/possible solutions.
“New progress in HBV control and the cascade of health care for people living with HBV in China: evidence from the fourth national serological survey, 2020” published by “The Lancet Regional Health - Western Pacific” was funded by the Chinese government. This hepatitis B survey announced multiple co-authors. Do you know any of these authors (these authors are professionals from China’s state-owned liver disease research institutes/hospitals)? If you know any of these authors, I suggest you try to get in touch with him/her. Through contact, you can learn some information (the Chinese government’s future plans/investment/research on hepatitis B). If you think this is a method, and if you need me to do anything, I can do my best to cooperate with you (you also founded the Australian Hepatitis B Voice and research laboratory).
Your previous comparison of R&D funding data for HIV and HBV is still fresh in my memory. I would like to remind you that China’s first lady, Ms. Peng Liyuan, is the WHO Goodwill Ambassador for TB and HIV/AIDS (I believe she has played a very important role in promoting China’s AIDS policy). If you or your colleagues/friends/other intermediaries can keep in touch with her, I believe it will be of great help in promoting the development of HBV treatments (it would be great if Ms. Peng Liyuan could attend the large hepatology conference in Beijing in March).
This is a great idea, though I am not involved with organising the meeting and it may be difficult on such short notice to organise the attendance of such a highly placed individual…
Well, i was so close to achieving my dream job which was joining the Nigerian Army, i was the later disqualified at the medical screening in 2018, after my blood test indicates i had HBV, Army sent me home and that is how my dream and life comes to an end.
Been battling this since 2018, i am a carrier, i am not under medication, i do go for checkups and viral load, Doctor told me my virus was inactive, just regular checkups, I never had to made it public due to discrimination. I tried joining the UK Army which was open this year 2024 for commonwealth citizens just to achieve my dream by not giving up, which i saw them also have no place for those living with HBV in their recruitment process, i just wanna be a soldier my entire life. I just had to give up!
This experience is terribly depressing.
Welcome to the forum and sorry to hear about your experiences. It must be such a disappointment to not be able to achieve your dreams.
Can I ask what drives you to want to join the army? Is there perhaps other ways that you can achieve your goals (e.g. protect and support your community and values) in other roles?
Joining the Army was where i see myself since my childhood, to make a difference, meet challenges, develop and acquire some leadership skills, service to community, patriotism, the parade, the green and desert camo, the tactical operations, the long range shooting, the daily routine exercise, the chants and high moral standard and others, that would have help me alot gain more confidence protecting my family, community and nation as a whole…i am a person who likes mental and physical challenge, combats, most especially the ground operation. I’ve gain so much support from family and friends some because of my physique, i am tall and huge, words of encouragement from people to join the army was massive. There are other para military like the Police, customs, prison service e.t.c but Army is where my heart lies, not Navy nor Airforce. I never had the chance to go after my high school which was a boarding school, until after i graduated from the university and decided to sign up, that is how i knew i had HBV, inshort that Army medical screening exercises was the reason i get to know about my status.
Hi @AAA,
Welcome to the forum and sorry to hear that the military rejected you because of HBV. That is one area I have always wished others interested in serving will get to experience it. In my case I served in the Army Reserves for a couple of years before I was discharged due to HBV, so I wasn’t disappointed that much.
I understand you want to serve and make a difference, maybe consider other avenues. Talking about discipline and having a structure, I believe there are other avenues out there where you can gain these same experiences. Think about becoming a volunteer and serving people in your community. It is something many of us don’t consider, but I can tell you it is fulfilling and makes you a better version of yourself. Take some time and think about what other avenues exist in your community. Being told by others to join the military is not a great motivator but rather you have to have the desire, passion and commitment. It is not as pretty as people see it on the surface. It takes a lot for people to continue serving in these institutions. Anyway, don’t give up. Keep trying. Best, Bansah1
Hi, I’m new and was diagnosed last year. Went through depression and shame. I’m a Corrections Officer and was a Corporal until this happened. My co-workers treated me differently and so did my bosses. Was awful and still is. Not sure how to describe how I feel. I became a Corrections Officer because I thought if I could just help one person to change their life, it would be worth it. But now….just not sure what I am doing right about anything.
Hi @Kiowa6530,
Welcome to the community and I am sorry to hear about your situation. I understand and empathize with you on this. It is hard with life and living with HBV makes it even more challenging. What are they doing when you say they are treating you differently? Is it isolating, discriminating, etc.? @chari.cohen, do you have any advice?
Please, know that it is not you that is the problem. They are. Ignorance and lack of education about HBV can make people act stupid at times. That is why we are always pushing for HBV education and training awareness. People change when they know how this virus works and spreads. I hope they have health education programs for all the officers. You are making a difference, do not let the actions of others derail your dreams or suppress your passion. We are here for you and you are not alone. We see you. Bansah1
Thank you
They first told me that I could do my “light duty” because at the time I was very sick but I couldn’t afford to not work, so my light duty was supposed to be me checking in visits for inmates. I was told I could sit beside the receptionist and wear gloves. Within a day or 2, that changed and I had to stand in the lobby where the flies and temperature was at least 10-15 degrees hotter. Then, nobody wanted to be close to me, nor was I allowed to go anywhere in the building without gloves. Thing is I was not contagious like that.
I’m a very honest person and decided that it was my responsibility to advise my co-workers of my condition. I explained that my touch would not have any effect or impact on their health whatsoever. I had already been exposed and my body had already fought it off, I was sick because my stomach still hurt at various times and pains were inconsistent but I was not contagious, butThank The whispers and rumors are still an every day thing. A year later….they took my rank and demoted me to a regular officer saying I was not the same officer I was last year.
Thing is, I am experiencing pain in my feet and back and everywhere. It could be my age, but it is strange because last year after the diagnosis, I had appendicitis just 4 months after my diagnosis of Hep B, so no, I am not the same officer. My body has been through a lot, but the whispers and rumors are not helping. I trusted my boss and was honest and now they demote me. Just feels wrong and spiteful.
Thank you for listening and understanding. It’s been very hard and stressful and still is. However maybe in time I’ll be able to process and move on from this
Hi @Kiowa6530,
Oh, wow. That is horrible what they did to you by isolating and making you wear gloves everywhere, then to make matters worse getting demoted. Are you in the US? I sense so but I’m not sure. If you are, call the Hepatitis B Foundation at 215-489-4900 whenever you can. They answer calls from 9 am to 5 pm EST. Talk to someone at the Foundation and they can guide you on what you can do next in the form of any action. This is discrimination based on your status and there is a US agreement from the Justice Department against this behavior.
You have been under a lot of stress and I believe your body is reacting to it. Too much stress can hurt our overall health. I am sorry you have to go through this alone. We have your back now so you are not alone. Keep us posted after you speak to the Foundation. Bansah1
Sorry to hear about your experiences, @Kiowa6530. Hepatitis B is covered under the ADA and some of these actions could be violations against this.
I agree with @Bansah1 that there are people willing to help in these cases of discrimination, such as the hepatitis B foundation (contact details here: Contact Us » Hepatitis B Foundation).
Please know that you are not alone and please keep us up to date with your situation.
First time seeing a post about Hep B and reading all these comments has somehow livened my mood a bit.
I was diagnosed about 8/9 years ago when I got my first job (medical). I was told it wasn’t chronic but that it wasn’t really doing much cos it wasn’t active. So I should just take care of myself and get tested every 6 months. Truth be told I didn’t know much about it and the only people I told (my best friend and gf) didn’t care that I had it (in a good way). They told me it wasn’t anything I should be concerned about, but I shouldn’t tell other people. And years past by and it didn’t really bother me at all.
Fast forward to 3 years ago when I wanted to date this girl who rejected me cos I had this virus. And that gave me a reality check. She told me I may die and leave her and she can’t have that. Ps. I was already in love with this girl. So Yeahh, that’s the first time I ever felt like I wasn’t enough. And till this day, I still feel like I’m not enough. I went through severe depression and for the first time since I was diagnosed, my viral load went over the 20,000 threshold last year. So I started treatment (which I’m still on, though my load is currently less than 10). I’ll probably finish treatment this year. Managing the virus isn’t an issue for me because I’m very health conscious and truth be told I still don’t know how I got this virus. My only suspicion is that I got it as a child because I used to be very sick and spent most of my time at hospitals.
The problem is how to tell my mind I’m enough. I have given up on getting married and having a family because I don’t think anyone will accept me, and I’m not ready to go through what I went through 3 years ago all over again. There’s little to no education about hepatitis b here so people aren’t so open minded about dating someone with it. Just felt like I can share this year. My mental state has been terrible, I was literally chatting with ChatGPT about it when it recommended this community. I’m from Ghana by the way and I’ll be 35 this year
