Home Forums Main Forum Patient Stories Geopolitics How to get a doctor to monitor your generic treatment

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  • #22782
    Avatar photoisaing4
    • Guardian Angel
    • ★★★★★
    @isaing4

    I have relied on human curiosity and was fine. B)

    In 2010 I was diagnosed with hepatitis C and F0/F1. I waited two years, until 2012, the treatment with interferon. And I refused the interferon! :unsure: My decision was easier to take because of a great GI doctor, at the end of the career (70 years). He encouraged me that soon there will be other less invasive options than interferon + ribavirin. :)

    The GI doctor whom I refused the interferon indication was not happy but accepted my decision and I just made annual bloods and tests echography / fibroscan.

    In 2015 I explained my GI doctor that I want to treat my HCV but not with interferon. The treatment with DAA was and is still available only for F4. So I said I want / can buy HARVONI. Of course he was surprised and asked me if I knew how much it costs 44 000 Euro = 50 000 USD. My response was that I am trying to get the money.
    So I asked him if it is possible to give me the prescription for HARVONI, to monitor me during / after treatment and what other bloods / tests to do. I did the bloods / tests. When I received the prescription, I remembered once again, that the active substances must be specified, SOFOSBUVIR and LEDIPASVIR, like any prescription. I translated the prescription in English at an authorized translator. With this prescription I was in Bangladesh, at Incepta factory, and got medication for 12 weeks, according to medical indication. It was the end of November 2015, and India was still not selling generic medication for HCV. :(

    The doctor said YES! <img style=illy:' /> :ohmy: :cheer:

    My GI doctor told me to come to him before the start of the treatment. So I immediately began the treatment. :)
    On the visit I made to the GI doctor, I informed him that I had money only for TWINVIR, generic Harvoni and that I have already begun the treatment and I feel very good. I gave him the link to FixHepC. He saw that a doctor in Australia have tested the medicine and is identical to the original and all your success stories with generics!

    From now on our collaboration worked well, within the limitations of NHS in my country! Although he was not happy with my decisions and I forced his patience, the curiosity won.

    When I had clear results, the GI doctor asked me details. I was the first patient treated with generic medication for hepatitis C in that clinic. I gave the link to all patients / doctors / nurses who wanted to know more. I spoke with everybody who contacted me for more details.

    From my point of view, in my country, Romania, the patient must have the initiative if is not F4 and don’t want interferon treatment. He must be determined. There are good GI doctors that are willing to help you!

    But in order to be determined you must have access to information, basically the internet and English language.
    This was my advice if the person is not used with the internet nor with English language. Everybody have a child or a brother or a nephew or a friend or an acquaintance that can give you the information you need to be determined.

    I wish you good health and good luck to all sufferers, including those with hepatitis C!


    HCV since I don’t know. Diagnosed in 2010.
    GT1b, F0/F1, VL 9M, ALT 44, AST 42, Tx naive,
    started 12 wks Twinvir on 06.12.2015. Feeling great and grateful 🙂
    virus not detected 06.02.2016 & SVR24
    isaing4@gmail.com

    #22791
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    My experience in getting the prescription started with the research I was making about generic the HCV generic drugs, collecting trustable information about these generics (press releases, european journal of hepatology, information about the REDEMPTION trials available on clinicaltrials.gov, list of the manufacturers who produce the HCV generic drugs).
    It is also to be mentioned the support I got from dr. Freeman – to make me trust in the generic drugs and to advice me to ask my Romanian doctor’s support which, after having showing the documentation I collected, gave me the RO prescription for Sofosbuvir and Ledipasvir.

    Couple of additional points from my experience:
    – when I discussed with my RO doctor, I let my dr know I am decided to go on the generic path and that I assume this decision. I let my dr also know, that I will not go on this path only if the substances from the drugs would have been wrong for me (which was not the case, but you never know…..that’s why you need a doctor to make sure you do not take the wrong treatment).
    – in one of the posts I placed on this forum, I made the remark that a patient needs to make team with his/her doctor in getting treated, especially in the case of generics. Let your doctor know what information you have about hcv generics and ….. do not put unnecessary pressure on him/her. Have in view that in your country there might be laws or rules of the healthcare system which might restrict/limit him or her in initiating the discussion about the hcv generics. But when the patients starts the discussion and is prepared for this, that’s a completely different story. And also have in mind that your doctor has a variety of patients, some being more open, while others being very questionable or having critics related to the generic drugs, so … do not be surprised if your doctor is somehow not so talkative about such subject.

    – in a world full of doubts, where people around are asking “how can you be sure about these generic drugs”, it can become very difficult to resist the “temptation” to give up. Well, this is the key point where I had to decide (yes/no) to generics, so have in view that it is up to the patient to take such a decision!


    @isaing4
    : I agree completely what you wrote above, especially the part related to the access to information of RO patients. On the fixhepc platform there exist useful information, partially translated in RO language and available as bilingual PDF files (RO+EN), to support those who are not able to understand English. It would be great if one day, some relatives or friends would have the possibility to print some of these pdf files and give it to the patients.

    Cheers,
    RHF


    In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
    HCV kills more than 500000 people every year. HCV generic drugs work. Don’t become a statistic.
    By sharing this Youtube video you might save someone’s life!
    My TX: HEPCVIR-L[generic Harvoni]-India
    SVR52 achieved

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