This is a good idea and one that we have discussed before. This strong example of one of our own community dying from a lack of antivirals; whether due to inaccessibility or unaffordability, just goes to show how much work needs to be done to eradicate unnecessary death due to this disease, all over the world.
A program that helps sponsor access to antivirals would be a stellar cause. It’s just a dream for us now, but maybe if HepBCommunity, The Hep B Foundation, WHA and others got together with groups like doctors without borders, then maybe… just maybe… who knows what kind of movement could be inspired to get antivirals and testing and vaccines to places that have little access to such a necessary resource. Something like this would have a lot of logistics involved and of course a lot of sponsorship needed to fund much more than this community could scrap up. Of course, we need to run the idea to the directors to see if something like this is even pheasible.
Even if it wasn’t anything this grandiose and if we had some way to help any amount of people survive, that would be doing something. It’s just that the cause itself makes me want to see a massive change that just may not be logistically possible for us. Helping anyone has got to be doable for us though.
HI @PaullyHBV,
Great idea about having organization’s join forces to push things to the areas that are needed most. I like it
Two individuals and I tried to fundraise to help him, but it was difficult. You will need to be on social media and have some celebrity share for it to go viral or the person have a huge following. Other than that forget it as we learned. Nobody should be dying from this disease in 2023. We need to do better.
Hi @Caroline,
Thanks for your message. I hear you and I think someone’s mortality tends to remind us of our own. Our mind just brings that up and we begin to think about it. This is very personal to me in a way. I think my fear and worry is that I have family members with hepatitis B in Ghana; and the system is not that different from the one in Nigeria. I have always worried about my family members with the disease and witnessing Johnpaul’s struggle keeps me up at night and thinking seriously. It scary knowing that could be one of us or a family member or a friend.
We will continue to stay positive but also advocate for a change. We need everyone alive. Hang in there. Bansah1.
I think we can start it small and everyone can contribute whatever they wish for. It doesnt have to be huge amounts just if you are eating out save that money and donate it here. Even smaller donations can add up really quickly and we can use that funds to help anyone in the community who desperately needs it. There might be cases where we cant support an individual fully but at least something to help him buy medicines
Thank you for the passion behind this idea. It really is great the caring that this community has for each other.
An idea like this has the potential to do great things. To be set up well and be fair to everyone, this needs a lot of background work with administration, governance, funding structure, etc. It is not a short term project, but we can discuss approaches in our leadership meetings and maybe set up a working group for it.
Is it possible to send antivirals overseas? My doctor prescribes me two packets a month when I only use one packet.
I feel guilty having these extra packets when someone loses their life because they don’t have any! It’s wrong.
I’m not sure about the legalities of this. Not only should people not take prescription medications that were not prescribed to them, but it would probably be some sort of issue given the Australian government has subsidized the meds you get. I would recommend against this as an approach.
Hi Everyone,
I have been thinking about this issue and I have some ideas that might work or we should think about. The first is to get big pharma companies to create a discounted antiviral program for patients in developing areas where money is hard to come by and the medicines are not readily available. Patients apply directly to the company for the discount and supply of antivirals.
The second idea is that these pharma companies can donate some of their antivirals to hepbcommunity.org. Then the platform can work with local organizations with great reputation and good accountability record to manage and distribute the antivirals to the patients in those countries who need the medicine but cannot afford it. This donation could be quarterly, yearly or 6 months they decide.
We also consider the option of creating a fund for this specific purpose. Here too if we can get great discount maybe we use the fund to buy the antivirals from the pharma companies, then send them to the selected local organization for management and distribution.
These are my silly ideas, probably I think too much!!!. Please feel free to comment or share your thoughts. Thanks, Bansah1.