Without insurance, you cannot get medical prevention or treatment done in the US. I have insurance through work, but if I ever lose my job, I ll not only lose income, but lose medical benefits. Scary thought.
The whole Covid-19 year, caused many people to lose their jobs, businesses, income, and most likely their insurance and/or ability to pay insurance. Hopefully most are healthy without underlying conditions, but I m sure there are many with medical condition that their insurance was supplementing. To those people, it has to be tough and probably a very dark time. I m sure there are some hep b patients on treatment out there who has lost their job/insurance. Prayer sent to all
I would like to ask a question to the forum. Itâs sort of random.
If your CHB, is there such a thing as pre treatment or treatment not required but monitor stage? If you viral level are far below or below the level of treatment, isnât the virus still attacking your liver. That in turn makes your liver heal itself over and over, which will cause a higher scale on the fribrosos score. Then itâs cirrhosis.
As Thomas stated above, f2 and above should consider treatment. So is it basically most if not all CHB patients should go or be on anti-viral meds. Without it, even under monitoring stages, the liver is deteriorating itself.
Hi Johnny, these are good points. Within the current guidelines, you can be in a stage where treatment is not recommended: for example, when you have low viral loads, normal ALTs, and limited fibrosis.
Immune activation and killing of liver cells by the immune system doesnât necessarily mean there will be fibrosis/cirrhosis (Just as if you cut yourself, you donât always end up with a scar). In this state, you should maintain monitoring for any worsening of fibrosis levels.
Hi Johnny, I think maybe @Joan_Block or @Suwang88 might be able to answer this better as they are in the US. But I think these costs may vary from state-to-state and depend on your health insurance.
From personal experience, in Australia, I do not pay anything for my prescription of tenofovir (generics). Iâm pretty thankful for the socialised health care we have here. But even without this safety net, the cost is $67 AUD (or ~$50 USD) for a monthâs worth.
In the U.S. the cost of HBV meds depend on what type of insurance and/or prescription plan a person has. If you donât have health insurance or a prescription plan, the retail cost of the meds is prohibitive; however, folks can apply for the drug companyâs âpatient assistance programsâ either directly online or with their doctorâs assistance. For myself, I have a fairly decent prescription plan so only pay a $30/month co-pay for my TAF (Vemlidy). If I was taking tenofovir (Viread), my co-pay would be $30 for a 3 months supply. The difference in cost is because Vemlidy is still âon-patent;â whereas, Viread is âoff-patentâ and now sold as a generic. As you can see, itâs complicated to say exactly how much a drug costs because of all the variables. Itâs not a fair system but drug companies generally have patient assistance programs to help make their drugs affordable. Thanks, Joan
The key finding in your u/s is fatty liver, which I assume is not due to drinking too much alcohol? In the U.S. there is a tsunami of fatty liver disease - primarily because 30% of Americans are clinically obese. But thereâs also a phenomenon called âlean fatty liver disease,â which affects normal to skinny folks (lots of Asians!) who have fatty liver disease. Itâs a co-morbidity so has to be addressed since the liver is already being assaulted by the hepatitis B virus. The primary recommendations are to lose about 10% of your body fat (but what do skinny people do??), eat a mediterranean diet (fish, vegetables, nuts) and exercise regularly. There are currently no meds for fatty liver disease. Iâm just learning more about this because my fibroscan recently showed NAFLD (non-alcoholic fatty liver disease), so Iâm no expert. Just becoming aware myself of the issue. Frustrating! Joan
Thanks for this, Joan. Thatâs absolutely correct. In fact, our research group here at Westmead have been leading a movement to rename NAFLD (non-alcoholic fatty liver disease) to a more descriptive term - Metabolic associated fatty liver disease or MAFLD. While this sounds trivial, it really changes the thinking from something that doesnât have a cause (specifically not alcohol) to something that does (altered metabolism). This is a recent thing and yes, weâre expecting a huge caseload of NAFLD/MAFLD and donât really have any measures against it.
Been meaning to send this for awhile now. Just wanted to thank you for your ongoing work but wanted to emphasize the conference that you spoke at.
It was really great to hear you respond to peopleâs questions. I had so many and I didnât want to get on mic because I felt that I was sort of unaffiliated with the institution that was running the conference. I do have so many questions that I donât even know what they are. During that conference, I was able to come up with questions based on the conversations and questions being asked but I didnât want to inundate you with so many at the time.
Instead of compiling a huge list of questions for you, I will just ask them as they come up and I can think of them and post them on here.
I am sure you are such a busy scientist and family man but it would be great sometime to have a live Q&A with you for all of us on hepbconnect and hblist. It wouldnât have to be a huge conference or anything of the like. Just a Q&A session with you and maybe someone from more the medical side of things where we could ask questions and get insight from you. Just a thought.
I guess I just wanted to say Thank You for giving me some of your time at that conference and that I appreciate you and the effort you put into all us CHBers.
Paulâs idea is excellent. I bet the Hep B Foundation could help organize this since we just hosted the HBV Drug Development workshop for the FDA and had more than 600 people from around the world participate. Thomas how about checking with Chari to get this scheduled? It could be a closed meeting just for this list for now? Thanks a lot, Joan
P.S. Even after working with the Hep B Foundation for 30 years (and living with HBV for 61 years), I still learn new information from patient questions!
To get rid of fatty liver, you have to cut out the carbs and sugar. That means no rice, no bread, no beans, no grains. Then you have eat right and not eat too much.
Keto diet seems good. Itâs hard. I been losing weight but cannot stick to the strict keto dieting. Going to try again soon.
Body burns off stored carbs and sugar before burning fat as energy source. It takes about a month as some friends told me. The mistake many make on this is people stop eating and think ketosis will happen in the liver, but without eating fats to trick the body that a steady source of energy is available , your body will adapt to you not eating and slow down the burning carbs and sugar process.
Thanks Neptune for your response. And I agree with you, the keto diet is much too strict! Plus, Iâm mostly vegetarian so canât eat all of the meat protein they recommend. Being a nurse, I learned all about the importance of complementary proteins (e.g. rice and beans), which is what Iâm following to ensure that I eat a balanced diet. With that said, I also know one of the most important things I can do is to seriously decrease carb intake as much as possible and simple sugar. Fruit is too good to give up with lots of health benefits (vitamins, fiber), so thatâs why the keto diet is also impossible for me. My doctor has given me until April of this year to lose some weight (increase exercise and fiber intake are her recommendations) and see if my lipid panel numbers go down. In which case, she will give me another 6 months to lose more weight and check my labs again. Sheâs giving me this leeway because I really, really donât want to start another prescription drug and I especially want to avoid a statin since too many people I know have adverse effects (muscle weakness, fatigue).
Hi Joan! I watched you at that Live conference and participated by doing a phone interview prior to that conference and also responding to the survey questions. A couple of my responses were actually used during the conference and in the final documentation.
It was really great to see you as a panelist and I really enjoyed your testimony, sharing and input. I am SO glad to see you on this forum!
I mean this with all due respect when I say that I think of you as the Grandma of the CHB community. Please donât send me to the corner for calling you that⌠lol. It is seriously said with respect and adoration.
Thanks Paul for the ultimate compliment! Being an actual new grandma (our grandson is 3 months old), I take your message with the love and respect that all grandparents feel towards the younger generation. It really made me so happy to see so many people involved in the drug development conference and Iâm glad that you actively participated and were included in the final report. More than 30 years ago when I was first diagnosed, I had nowhere or no one to turn to for information or support. Although itâs still not easy to be diagnosed and deal with this chronic disease today, at least there are a few more resources available, including the Hepatitis B Foundation and now this new forum that Thomas Tu started. We have so much to learn from each other! Again, thanks Paul âŚ
For people who are on treatment, considering treatment or will be on treatment, what is the realistic treatment duration?
Could you take antiviral meds for 10,20,30 years? I know TAF and TDF, have not been around too long to answer the question. But with side effects and toxicity of the medicine, what do you think?
For example could you take 2-4 Advils or Tylenol daily for the next 20 years, without being toxic.
I have gone in with the expectation to be on them for the rest of my life (I am 34, right now, so itâll be a while). I really have not felt any side-effects after several years being on them, though I know other peopleâs experiences may be different.
That said, being in research and being so close to the forefront of whatâs known, I think there is more hope than ever before that taking these meds are a âholding patternâ to prevent liver progression before a HBV cure comes out. Personally, this hopeful message (that nucs are a temporary bandaid while a cure gets developed) is a really empowering and hopefully will lead to more people preventing their ongoing liver damage.
Please I want to know the latest antiviral that helps to stop the progression of the hepatitis B which wonât cause any other liver diseases or damage also prevent liver cancer. Iâm here in Africa,Nigera
Welcome to the forums! Tenofovir or Entecavir are the standard treatments for chronic Hepatitis B and are the most recently approved drugs for the disease. These drugs will slow progression of liver disease (including liver cancer) associated with HBV infection.