Urgent: Seeking HDV Treatment, Clinical Trial or Bulevirtide Access Options from Uzbekistan

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Hello everyone,

My name is Munis and I am from Uzbekistan. I am living with chronic HBV/HDV infection and unfortunately my health situation has been becoming increasingly difficult.

I previously underwent almost one year of treatment with pegylated interferon, but I am still struggling with HDV.

I am currently urgently looking for a realistic treatment pathway, including:

  • HDV clinical trials;
  • bulevirtide (Hepcludex);
  • Brelovitug or other investigational HDV treatments;
  • compassionate use or expanded access;
  • international hepatology centres that may accept patients from Uzbekistan.

I have already contacted several international centres and pharmaceutical companies. I was also informed by a European clinical centre that, based on my medical documentation, there were no evident contraindications to trial inclusion. However, international travel, screening and repeated visits are financially very difficult for me.

I have been unable to work for approximately one year because of my health condition, and I have three children who depend on me. I also have ongoing expenses for regular laboratory tests, injections and medicines, which I currently pay for myself.

I am not asking anyone for money. I am simply trying to find a legitimate and medically appropriate treatment pathway before my situation becomes more difficult.

If anyone here has personal experience with:

HDV clinical trials, bulevirtide access, Brelovitug trials, compassionate/expanded access, or treatment for patients travelling from Central Asia or other countries outside Europe,

I would be extremely grateful if you could share your experience or point me toward a doctor, hospital, clinical trial or organisation that may be able to help.

I still believe that there are good people in this world who are willing to help patients facing difficult circumstances.

Thank you very much for reading and for any information you may be able to provide.

Kind regards,
Munis

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@Munis

Hi Munis,

I’m really sorry to hear what you’re going through. Living with HBV/HDV and trying to find treatment at the same time, especially while supporting three children, must be incredibly difficult.

I did a search after reading your post, and there may actually be one option very close to you that is worth checking .

The Phase 3 Brelovitug (BJT-778) AZURE-4 trial — NCT07298330 currently lists a site in Tashkent, Uzbekistan: Research Institute of Virology of the Republic of Uzbekistan. ClinicalTrials.gov currently shows the Tashkent site as recruiting.

The Research Institute of Virology also has a Hepatology Center. Their website is: Contacts - Research Institute of Virology of the Republic of Uzbekistan , and you can find their contact there

Even if the trial has recently stopped screening, I would still contact them. They may know about other HDV studies, upcoming trials, or possible treatment pathways in Uzbekistan.

Regarding bulevirtide (Hepcludex), it is already approved in the EU for chronic HDV in patients with compensated liver disease, so it is also worth asking a HDV doctor whether it is available in your situation.

And you can keep copies of your recent check/scan and previous interferon treatment records together . It makes contacting different trial centres much easier.

Most importantly, please don’t feel that you are facing this alone. There are many people in the HBV/HDV community who understand how serious this disease is and genuinely want to see better treatments become available.

Keep asking, keep contacting centres, and keep posting updates here. Sometimes one connection or one doctor can open a completely different path.

We are all standing with you, Munis. I really hope you can find a treatment option soon.

Best,

Ke Li

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Hi Ke Li,

Thank you very much for taking the time to search for options for me and for your kind support. I truly appreciate it.

I followed your advice and contacted the Research Institute of Virology in Tashkent. They conducted a medical consultation for me on 19 August and officially informed me that Bulevirtide treatment is planned when the medicine becomes available at the hospital. However, they also explained that the medicine is currently not available, that it is not clear when it will arrive, and that I may have to wait for a long and uncertain period. Therefore, although I am on the waiting list, there is no clear timeline for when I will actually be able to start treatment.

My condition has been getting worse, and after almost a year of pegylated interferon treatment, HDV is still active. Because of this, I am very concerned about simply waiting for an unknown period without effective HDV treatment.

I would therefore be very grateful if you could help me look for any other possible options, such as:

  • another clinical trial for chronic HDV/Brelovitug or another investigational treatment;

  • an opportunity to receive Bulevirtide/Hepcludex through an individual, compassionate or other access pathway;

  • a hospital or hepatology centre in another country that may be able to evaluate and treat foreign patients;

  • or any other realistic HDV treatment/access pathway that you think I should pursue.

I am from Uzbekistan and my financial situation is very difficult, so if you know of any programme, centre, patient-support organisation or pathway that may help patients who cannot afford treatment abroad, I would be especially grateful for that information.

I can provide my medical records, recent laboratory results, scans and previous interferon treatment documentation if needed.

Thank you again for standing with me and for helping me search for a way forward. At this point, finding an effective treatment option as soon as possible is extremely important to me.

Best regards,
Munis

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Thank you for sharing your experience. I also have chronic HBV/HDV, and unfortunately my health situation has become increasingly difficult. I previously underwent almost one year of treatment with pegylated interferon, but I am still struggling with HDV.

I am currently trying to find a realistic treatment pathway, including clinical trials, bulevirtide or other new HDV treatments, and possible compassionate or expanded access options. I am from Uzbekistan, where I have been informed that there is currently no active HDV clinical trial available for me.

If anyone in this community has experience with HDV treatment, clinical trials, bulevirtide, Brelovitug, or accessing treatment internationally, I would sincerely appreciate any advice or information about where I should turn.

My financial situation is also becoming very difficult because I have been unable to work for about a year, I have three children who depend on me, and I have ongoing expenses for weekly laboratory tests, injections and medicines.

I am not asking anyone for money. I am simply hoping to find the right medical pathway before my situation becomes even more difficult.

I still believe that there are good people in this world who are willing to help patients facing difficult circumstances. Any information or advice could mean a great deal to me.

Thank you. :folded_hands:

GSK's HIBSAGO (bepirovirsen) Approved in Japan as First Functional Cure for HBV
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Sorry to hear about your situation. May God help you and ease your problems. With the Grace of God i am much better after interferon and tenofovir. After interferon my HDV load is within control. I am still taking Tenofovir. You must continue Tenofovir. I know Tenofovir does not help in HDV but indirectly when HBV HBsAg drops then it will help in my opinion.

I tried to get Bulvertide but i could not get. But I heard that bulvertide is also not very effective.

How much is your viral load for HDV and HBV. Also how much is your fibroscan score. Your liver functions.

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Dear Suresh,

Thank you very much for your kind and encouraging response, and especially for sharing your personal experience with interferon and Tenofovir. I truly appreciate you taking the time to respond to me.

Yes, I am continuing Tenofovir under my doctors’ supervision.

Unfortunately, my situation has remained difficult despite prolonged treatment. According to my recent medical records:

  • HBV DNA: Not detected
  • HDV RNA: Positive, approximately 6.7 log IU/mL
  • FibroScan: 22.7 kPa, within the advanced fibrosis/F4 range
  • ALT: previously reached approximately 2880 U/L
  • AST: previously reached approximately 2240 U/L
  • Total bilirubin: previously approximately 384 µmol/L, which subsequently improved
  • Platelets: approximately 119 ×10⁹/L
  • Albumin and INR: currently preserved

I also previously underwent almost one year of treatment with pegylated interferon, but unfortunately it did not provide adequate control of my HDV infection. Despite continued treatment and repeated medical monitoring, HDV RNA remains positive and my liver enzymes have continued to be elevated.

I have also experienced significant symptoms and loss of physical capacity, and I have been unable to work for approximately one year. I have three children who depend on me. I continue to require frequent laboratory testing and medical treatment, including medicines and injections that I have to pay for myself. This has made my financial situation extremely difficult.

At the moment, my greatest concern is finding a realistic and medically appropriate way to access effective HDV treatment before my liver condition deteriorates further.

I understand that you were also unable to obtain Bulevirtide. If you do not mind me asking, could you please tell me:

1. Where and how did you try to obtain Bulevirtide?

2. Was the difficulty related to availability, price, prescription requirements, country restrictions, or another reason?

3. Do you know of any country, hospital, hepatologist, patient organization, or legal access pathway where an international patient might realistically obtain Bulevirtide?

4. If you have personally spoken with any doctor or patient who has successfully obtained Bulevirtide, could you please share how they managed to access it?

I am currently contacting international hepatology centres, clinical-trial sites and pharmaceutical companies, but access from Uzbekistan is proving extremely difficult.

I am not looking for financial assistance from individual patients. I am simply trying to find a legitimate medical pathway to treatment.

Your personal experience is especially valuable to me because you have gone through interferon treatment yourself and have also tried to obtain Bulevirtide.

If you know even one realistic direction that I could investigate, I would be sincerely grateful.

I still believe that there are good people in this world who are willing to help patients facing difficult circumstances.

Thank you again for your kindness and for sharing your experience. I sincerely wish you continued improvement and good health.

Kind regards,
Munis Choriyev
Tashkent, Uzbekistan
Phone: +998 90 002 00 87
WhatsApp: +998 98 700 17 16

1 Like
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Sorry to hear about your situation but stay strong and hopefully you will find a way out of this.

I tried to get Bulvertide in UK and Qatar in 2022 and at that time, it was not approved and not available in both countries. At that time it was available in Germany and some other EU countries.

Try to contact @availlant he is working on new medicine and there might be trials going on

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We wish the forum @admins move the replies of our brother @Munis to a separate thread so he gets the support he wants, as the original thread is about the new Hibsago drug in Japan.

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Dear Dr. Vaillant,

I hope you don’t mind me contacting you directly. I was advised by another member of the Hep B Community, Suresh786, to reach out to you because of your work in the development of new HBV/HDV treatments.

I am from Uzbekistan and I have chronic HBV/HDV co-infection. My HBV DNA is suppressed on antiviral therapy, but HDV RNA remains positive. I have already undergone almost one year of pegylated interferon treatment without achieving adequate control of HDV.

My liver stiffness is also in the advanced fibrosis/F4 range, and my liver enzymes have remained significantly elevated. My condition has been becoming increasingly difficult, so I am urgently trying to find an effective treatment pathway rather than simply waiting.

I understand that Replicor’s previous compassionate access program has ended. However, I saw your more recent comments that new clinical trials are being prepared and that you are working toward the next steps for NAP development.

Could you please tell me if there are currently any clinical trials or other access opportunities involving REP 2139-Mg or the improved NAP formulation for patients with HBV/HDV co-infection?

In particular, I would be very grateful to know:

  1. When and where the next HDV clinical trial is expected to begin;

  2. Whether patients from Uzbekistan or other countries may be eligible;

  3. Whether there is any possibility of compassionate/individual access for patients with advanced liver disease who have failed pegylated interferon;

  4. If no access is currently possible, whether you could recommend a specific centre or contact that I should approach.

I can provide my complete medical records, laboratory results, FibroScan report and previous treatment history if this would be helpful.

I would be extremely grateful for any guidance. My current situation is becoming increasingly urgent, and I am trying every realistic avenue to find effective treatment.

Thank you very much for your time and for the work you are doing for patients with HBV and HDV.

Kind regards,
Munis
Uzbekistan

1 Like