Hello everyone,
I come to you all with not so good news. It’s been a very sad and difficult week but I try to remain upbeat. I want to share with you all that our brother, colleague, and friend JohnPaul_Ezieke passed away on Tuesday. He has been battling hepatitis B related complications for the last few months. That Tuesday also happened to be my birthday which made things worse. It was a sad and difficult day to say the least.
Anyways, I just wanted to pass this news along. I definitely know this is not the news we all want to hear.
Please lets adhere diligently to our various treatment plans and keep up with our check-ups/medical appointments for monitoring. They are very important as hepatitis B is not the typical virus one will want to play games with. Thanks and take care, Bansah1.
I have been thinking about him this week and was going to post to see if anyone knew his status. How unfortunate and sad. I wish we could have done more for him. One of our own has fallen. May he be blessed in Heaven now that he doesn’t have to suffer here on Earth. Prayers to his family.
So sorry that you had to deal with this during your birthday. Happy Birthday by the way!
You bring up a good point and reinforcement that we all need to be vigilant about our condition. Hope you don’t get too depressed by this. I know it can really hit hard for people with big hearts and especially cause you had more interaction with his situation. May your heart heal and have peace.
Hi @PaullyHBV,
Thanks for your kind words. You are right, if there is any comfort it’s that he is no longer in pain and suffering. Johnpaul has suffered this last 3 months or so. We tried to find him help but we failed at that.
Tuesday was a tough day. I am trying to stay positive knowing at least I tried my best with the other gentlemen to find him help.
We need to take it serious. I was thinking about it today and I think his condition might have gotten worse this quickly because he will start taking his antivirals, then will stop because he is unable to afford the next refill. This has been going on, so he goes for months without the medicine. That might have caused the virus to come back with such a vengeance to cause so much damage to his liver. These medications in any serious world should be free to everyone, but that will never happen.
I am doing the best to keep my head up. I appreciate you reaching out. Thanks, Bansah1
Like minds Bright. I was thinking pretty much the same thing today. I was wondering what we could have done to help him more. The fundraising for the transplant was maybe too big an ask for a community of people. Too bad there wasn’t a large company (or maybe the pharmaceutical companies) that couldn’t sponsor enough to save someone’s life every once in a while. Especially big pharma that makes billions off of those that suffer. I mean, I know that it costs lots of money to create treatments and find cures but these big pharma companies make mega billions of dollars. Maybe they could sponsor to save a life here or there for $50k.
What we could have done and afforded was to help pay for his meds but I guess it is so hard to do this as individuals from all around the world. What is sad is that it probably cost less than $1k a year for Entecavir in the U.S. What is sadder is that if he was in the U.S. or Oz, he probably wouldn’t have died or at least had a much better chance not to. How many John-Paul’s are dying of this disease in under-developed countries just because they can’t get or afford any antivirals? I guess we need to appreciate the healthcare that we do have when there are others who have little to no healthcare.
Again, I am so sorry Bright, I know this was so close to your heart.
Hi @PaullyHBV,
I guess we think along the same lines often. It is a good thing I think. You make some great points in your message which I agree with 500%; unfortunately some of these corporations only care about their stocks and profits for their stockholders. I strongly believe that Johnpaul would still be alive if he had lived in one of the western nations. It is a hard pill for me to swallow though, that people have to die from diseases that can be treated because of where they live or how much money they have to afford the treatment. This is sad and cruel in my view. Johnpaul is not the first and he will not be the last person to become part of the hepatitis B statistics, unless we change the way the world as a whole is responding to this crisis. The people who need these antivirals the most are unable to afford it or they are not readily available to them. This cannot lead us to eliminating hepatitis B virus. Same thing with vaccination to prevent mother-to-child transmission; the areas that need these saving measures are not getting it and more children continue to be chronically infected by their mothers (unknowingly) through birth. We need to have a more patient focused approach so we can reach all the people that need help/support with this disease. As a society, maybe we can also focus more on areas where hepatitis B is endemic. Together I strongly believe we can turn the tides against this formidable opponent called hepatitis B.
Thanks for your kind words of support. It is appreciated. Bansah1.
I felt really anxious by hearing the update about John Paul. Its a great loss and wanted to see if we as members of this community can create a small funds account to aid people who cant afford medicine. Not sure if this can be setup but just an idea so people believe in our community and we together as a community can help individuals even if no one can.
Hi @Ash_Malhotra,
Thanks for your message. It will be a great idea, but it will be something the community needs to discuss and if we agree, decide on how to go about that. We could save some lives that way. Best, Bansah1.
@Bansah1
I am so sorry for your loss and the loss of one of us.
It’s not fair that someone has to die because they can’t access medical care.
To be honest, im feeling sorry for myself too.
That could be one of us!
This is why I hate this disease. It’s always there.
But then asthma can be like that too. You don’t know when you’re are going to have an attack and die. My MIL had asthma all her life and has nearly died from it in the past. She’s now 81.
I WILL stay positive
Just wanted to let you know I’m thinking of you all.
Thanks for the update on John-Paul, and I’m sorry to hear about his departure and his family’s loss. We really appreciate you (and others) trying to help him through it all.
I have moved the idea of the medical care fund to a separate topic so that others can find the discussion a bit more easily.
