How are you doing?: What it means to live with HBV

Hi @Thomas, @availlant, (and others):

  1. What causes “inactive carrier” status? Is it luck, treatment, other factors?

  2. Just curious: I have suddenly become keenly aware that every medicine commercial on TV mentions the HepB warning. Is there something that’s driving these warnings?

  3. I am also more keenly aware of commercials promoting HIV medications. I even saw one commercial specifically for HepC. Any insights on why we do not see commercials promoting HBV medications?

  4. I listened to your recorded interview regarding your research and lived experience with HBV. I really enjoyed it. I appreciate the positive messages you promoted. I also understand the fear that we live with regarding not knowing when our liver will be impacted by the big “C” word.

  5. Finally, I’m getting mixed messages from different doctors. I recently read in my medical notes that I have a “diagnosed HBV liver disease.” But then my last doctor told me a month ago that I “do not” have a liver disease and that “I have a disease that could cause liver disease.” Any insights on this distinction?

In closing, I am making sure I’m getting all the immunizations that I’m eligible for: Shingles, Tetanus, Flu, Covid, Pnuemonia, HepA. I’m not taking any changes unnecessarily (LOL).

Thank you and stay hopeful.

Dear @hopefulone,

Thanks for your very insightful questions. I will try to answer as best as I can:

  1. “Inactive carrier” status is a term that describes the third stage in this cartoon (Hepatitis B Virus 101 with Dr. Thomas Tu - YouTube). I describe it as the immune system’s success in clearing most of the cells that are infected with Hepatitis B. We don’t exactly know what drives this state, other than the immune system becoming active. This may be achievable by upcoming drugs that stimulate the immune system, but this has not been tested widely yet.

  2. This might be a US thing, as we don’t really have medicine commercials here. It would be interesting hear the US perspectives on this (@john.tavis any thoughts?)

  3. As above

  4. Thank you, I appreciate your kind words.

  5. Yes, these are two different senses of the word “disease”. The first sense is that there is something infecting your body that has the potential to cause harm (you have this); the second sense is the active symptomatic harm being done to your body at the moment (you may not have this if you are in inactive carrier phase).

Hope this helps,

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Hi @hopefulone,

Thomas did a great job answering the other questions, so I’ll limit my reply to answering your questions about medical commercials. I’m presuming you are in the USA.

One of the liver’s big jobs is “detoxifying xenobiotics”, which is a fancy way to say it breaks down things that should not be in the body, like toxins in food. From the liver’s point of view, drugs are “xenobiotics”, so it is a dominant site of removal of drugs from the body. The dosages for drugs are carefully calibrated to have the right amount of drug to do the job they need to do, so the amount of a drug in the body and how long it stays there can be changed for drugs that are metabolized in the liver if the liver is damaged and is not breaking down the drugs at its normal rate. Also, a damaged liver can itself become more sensitive to potential toxic side effects from breakdown of drugs. Therefore, a very large number of drugs carry warnings to be careful when prescribing them to people with chronic liver diseases such as hepatitis B.

As to the lack of commercials for HBV drugs: For reasons that I don’t understand fully (and that make me very angry), HBV is almost an invisible disease in many parts of the world, America included. It just gets overlooked in marketing, health education of the general population, and even sometimes in education/training of healthcare providers. Organizations such as the Hepatitis B Foundation, ICE-HBV, HepB Community, and many others are working to raise the profile of HBV+ folks so that they get the information and care they need.

I hope this helps.



Hi @john.tavis,

Thank you so much for your response. I appreciate it and it makes sense. It’s just amazing that, psychologically, it seems like I am so much more sensitive now to the commercial warnings about the liver and HepB than I was before.

Thank you also for all you are doing in the HBV space to help and heal others.

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Hi all, today is my 6 months check up again. I’m really anxious going to the appointment and 6 months went by fast. Every time going to the check up stir up all the emotional feeling again. I hope there will be a cure soon for all of us.

Dear @Olive,

Wishing you all the strength with this. Hope everything is well and you keep us updated on your status.