Dear Scientists/Researchers,
I have been on Tenfovir disproxoil (245 mg) since 2021 and recently moved countries.I did my research and checked that I would qualify for treatment in the new country. However, they rejected my application because my viral load is 0 - understandably so as I am on medication, I was encouraged to give up Tenofovir for 2 months or so to wait for the viremia to go up but I am not willing to do that. Could you please send me links to papers that mention risks and implications of stopping Tenofovir? Thank yu.
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Hello @Natti
Sorry for the late reply.
Not a happy situation. I hope things work out for you.
I’ll get in touch with our experts. They shouldn’t take too long to get the information you need.
Blessings
@Bansah1 @ThomasTu @john.tavis
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Dear @Natti,
This is very strange and unfortunate situation. Can you tell us what your new country of residence is?
Normally, the fact that you have chronic HBV infection which is currently suppressed on TDF should be known to the authorities so that your continuation on TDF therapy is automatically approved. The only thing I can think of is that this fact was not present in your application or not properly documented in your medical records.
TDF is now generic and so is not so expensive. I highly recommend that you get your doctor to write you a prescription for TDF and pay for it while you solve this issue.
Viral rebound following TDF stoppage is more rapid than when ETV is stopped. This rebound can sometimes be aggressive and associated with rapid onset of liver disease. This is an issue which is well known in medical and government domains. This is why the refusal to subsidize TDF by the local authorities is so surprising.
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Dear @availlant, thank you so much for weighing in. I appreciate it a lot!
I am in Poland now where there is a government-subsidised programme that covers not only the medication but also comprehensive care (ultrasound, blood tests). To qualify, you must go through an assessment process, which, as I understand, requires amongst others evidence of viremia.
I submitted my medical documentation, which clearly indicated a rise in viremia and elevated liver enzyme activity—both of which formed the medical basis for initiating treatment. However, during the application process in Poland, only viremia was tested, and at that time, it understandably showed as 0 as I am on medication. No tests were conducted to assess liver enzymes or liver condition, despite me requesting that. I was sort of even encourged to give up medication for a few months to activate the virus, which is a complete nonsense as the relapse is one thing but also resistance to TDF could be another implication.
I would like to formally challenge this decision and am currently gathering evidence to support my case. Hence, I hope there is some medical research/paper I could present to support it.
Thank you!
Kind regards,
Natalia
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Hi @Natti,
Sorry to hear about your experience and the situation forcing you to self-advocate in such a manner.
The most appropriate manuscript to cite would probably be the EASL Clinical Practice Guidelines on the management of hepatitis B virus infection (https://www.journal-of-hepatology.eu/article/S0168-8278(25)00174-6/). This was just updated and launched yesterday, so great timing! Some relevant sections for your situation include:
When starting NA treatment in HBeAg-positive individuals with a high viral load, achieving optimal viral suppression (HBV DNA <LOD) is a challenge229 and strict treatment adherence is critical, as fulminant liver failure associated with ALT flares can occur in the event of uncontrolled treatment cessation.
Additionally, HBsAg status should be checked every 12 months to monitor for HBsAg loss, which is rare but significant as treatment can be stopped.
Hope these help,
Thomas
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I am not a doctor or researcher. I am sure you will find many papers advising against stopping Tenofovir even when the viral load is zero. However, there are also papers suggesting that stopping NA treatment may lead to a functional cure. For me, a key factor in deciding to stop NA treatment is the level of serum HBsAg. If it is below 100 iu/ml AND if you are under the care of a very experienced HBV specialist, then stopping NA treatment may lead to a functional cure. So, I think the risks and implications of stopping Tenofovir relate to the levels of HBsAg in your blood, not just relate to your viral load.
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Thank you very much. I am now building a case a hope I can challenge their decision successfully.
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From your documentation, is it clear that you have chronic hepatitis B and were on tenofovir treatment before?
I also relocated to Poland in the past while on treatment in another country - and:
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it was difficult to find an appointment with a hepatologist quickly (i.e. this or next week) - but a local hospital was able to do it once I’ve explained my situation (lived abroad, running out of medicine, could potentially die if I don’t continue my treatment)
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during the appointment with a hepatologist, he reviewed my past documentation (mostly in English) and had no objections to put me into “program lekowy”
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Hi Mantana, this is so great to hear. My experience is completely different. Yes, it is clear i have HBV. My doctor in Wroclaw insists I will not be accepted. She claims it is not her but the programme itself that excludes me. She gave me a prescription for Tenofovir but it is nowhere to be found in Poland - very few phamarcies have it and even if it is a supply for one month with no guarantee for additional supply to be available soon. Where are you based?
This gives me hope!
I would appreciate it if you could direct me to the clinic/hospital where you are being treated. Maybe I could try it as well. Wroclaw does not seem to be the case.