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  • in reply to: Untold stories of HepC in Canada #22885
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    I’ve just beeen able to see the full video. There were quite some things that were told there which I also experienced.

    The video is in my view part of an awareness program. The ending of the video left me …. outraged. Again and again and again it was mentioned that there is a cure, but it was not specified how that cure look like and how to access it. A major problem that is not so much approached is that HCV is constantly associated with a very expensive cost. So I felt again like before getting treated with generics: dissapointed that somewhere there is miraculous treatment which will not be provided to me and for which I should continue to wait and hope.

    Things about HCV should be explained in a much simple way so that people can gain trust.

    Let’s take the example of a 150 KM ride:
    – accessing the current branded treatment is like asking the patient to run these 150 KM. Are you fit enough (i.e. have enough money)? Then start running? Or sick enough (qualify for treatment via the healthcare system)? If yes, we (healthcare system) can get you treated.
    – accessing the generic treatment is like paying the bus ticket, take the bus, drive 3-6 hours (where 1 hour = 1 month of treatment) and here you go, you made the 150 KM trip.

    Since many of the 200 millions HCV patients are not sick enough (yet), running 150 KM sounds like mission impossible, however buying the bus ticket should be very convenient. They would just need to know that there is a bus and from where to take the ticket.

    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

    in reply to: Untold stories of HepC in Canada #22867
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    Hi Hieu,

    a very interesting video and also very emotional. I had to stop seeing it after 10 minutes, however will try to watch it entirely this week-end.
    It left me …. NO COMMENT and reflecting on the real size of what HCV means today on a worldwide level!

    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

    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter
    Greedfighter wrote:

    This presenter missed the critical point.

    The pharma companies are going to keep their patents in place in the first world countries. I applaud protests, appeals. etc. But I doubt that it will accomplish anything. The message that needs to be told is that in most countries, a 3 month supply of generic drugs can be imported “AT THE PATIENT’S EXPENSE”. That is what is being done here. Most HEP C patients will find $1500 for the cure if they know about it.

    A current issue in the present times is that not so many people are aware about treating and eradicating HCV via generic drugs. So sharing this bit of information that generics work and, as dr. Freeman pointed in the article published on Liver International, using the Art. 60 from TRIPS as an imperfect, but pragmatic solution are the tools that are currently available to treat those HCV patients being denied by the healthcare system.
    Looking in the past history of humanity, 500 years ago those people saying that the Earth is round and orbiting the Sun were still rejected by the society, but the more the news was spreading, the more people were becoming aware that this is a new truth which eventually ended to be accepted by the entire world.
    So, even though it is sad to see that people continue to die, in a near future the world will know that those deaths could have been prevented if IP and monopoly rights given by the patent system would have been differently conceived. But yes, that’s something which requires politics….a lot of it….

    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

    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter
    Hieupham wrote:

    Hi RHF,

    Very good idea. Thank you :)
    Must find the “PRESENTER”

    Cheers

    HP

    Hi Hieu

    PM sent to you.

    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

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

    Hi Hieu,

    thank you for sharing this video.
    Seeing that the video was filmed within the TEDx format and looking at the TEDx rules (see below) , triggered me another idea: how would it be if “someone” could make a TEDx film to explain the idea of the Buyers Club supporting people to access the generic medication for HCV.
    TEDx videos seem to be quite attractive for many people.
    A TEDx video about HCV generic drugs would imply no commercial / marketing for the generic producers, rather it would focus on the idea of accessing the HCV generics by highlighting key facts that:
    – HCV generics work;
    – Art 60 from Trips allows the importation for personal usage in many countries from the world;
    – the Buyers Club is intended to support patients to import the drugs;
    – raise awareness about the importance of the supply chain (…. which for some looks like a kind of scarecrow)….

    Presenting such information would be extremely relevant for the HCV patients (who desire mostly to get treated and perhaps not in the same extent to argue about or fight with current Big Pharma’s practices) and aligned with the spirit of TEDx, which has the following rules:
    What is a TEDx event?
    Imagine a day filled with brilliant speakers, thought-provoking video and mind-blowing conversation. By organizing a TEDx event, you can create a unique gathering in your community that will unleash new ideas, inspire and inform.
    TEDx event is a local gathering where live TED-like talks and videos previously recorded at TED conferences are shared with the community. TEDx events are fully planned and coordinated independently, on a community-by-community basis. The content and design of each TEDx event is unique and developed independently, but all of them have features in common.
    TED’s format
    A suite of short, carefully prepared talks, demonstrations and performances that are idea-focused, and cover a wide range of subjects to foster learning, inspiration and wonder – and provoke conversations that matter.
    TED Talk videos
    Every TEDx event either shows only TED Talk videos to its audience, or shows both TED Talk videos and live speakers from the community. For events less than half a day in length, two TED Talks videos are required to be shown. For longer events, 25% of the total number of talks must be official TED Talk videos. All TED Talk videos can be found on TED.com.
    Diversity of topics
    All TEDx events present multiple issues and a diversity of voices from many disciplines. After all, what’s the fun without a little variety?
    Community-driven and bias-free content
    TEDx event is organized by volunteers from the local community, and just like TED events, it lacks any commercial, religious or political agenda. Its goal is to spark conversation, connection and community.
    What a TEDx event is not:
    – TEDx event isn’t an industry or marketing conference. It isn’t limited to one topic or field. It isn’t used to sell something.
    – TEDx event is not organized by or for special-interest political, religious or commercial groups.
    – TEDx event cannot be used to raise money, not even for a charity.
    – TEDx event cannot partner with another conference or event.
    – TEDx event can’t be co-branded with an institution except under specific license types – for a college or university, or for internal events (for corporations and organizations).
    – TEDx event is not a platform for professional speakers, such as motivational speakers and professional life coaches. Its purpose is to give a platform to those who don’t often have one.
    – TEDx event is not focused solely on entrepreneurship, business or technology. Diversity of topics is key!
    (see more about TEDx rules on https://www.ted.com/participate/organize-a-local-tedx-event/before-you-start/what-is-a-tedx-event )

    Such an idea would however require to have a good presenter …. .

    In case anyone thinks this idea sounds pretty good to give it a chance, perhaps we may continue to think on it.

    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

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

    Recently I spotted couple of Romanian doctors who gave positive answers about the generic HCV drugs when they were asked on online platforms whether such medication is effective. Even though their answers were quite short and sharp (i.e. “YES” or “it worked well on my patients”;), there is an obvious fact to mention here: there are more and more doctors AWARE that the generic HCV medication does work.
    It would have been a clear “suicide” for these doctors to claim that generic drugs are not working (especially that so many people confess about being cured with generic drugs), but at the same time, it might have been also a “suicide” for them to openly advertise about the generic drugs (as long as the generic drugs are not approved to be used in the country).

    So, this leads to the following idea:
    1. If YOU (yes, you, the reader of this post) are new on this forum and still have doubts (which is completely understandable) about the generic HCV drugs mentioned on this forum, why aren’t you looking for an online forum or blog where the doctors use to answer to the questions the patients are asking, place your question about the HCV generic medication and see what the doctor will tell you.
    You may ask something like “Hi, I am thinking to cure my HCV with generic medication, yet i would like to know whether these drugs are safe and/or effective?”

    2. If YOU (yes, you, the reader of this post) are already familiar with this forum (or even better, got treated with generic HCV medication) would like to help someone, why not doing a 5-10 minutes search to find a forum where someone is asking a doctor about the generic HCV medication and see whether you may provide some useful information (like the ILC Press Release from Barcelona 2016 or the article written by dr. Freeman and dr. Hill about the usage of HCV generic medication) and see whether a doctor will notice the information and hopefully will leave a reply. In this way you might help the patient by providing a couple of relevant information and ….who knows, maybe for that doctor it will be some interesting study material.

    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

    in reply to: Highly detailed article on DAA resistance #22839
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter
    ”James-Freeman-facebook” wrote:

    My personal view is that the thinking on resistance is wooly.

    HCV is a quasi-species meaning that it mutates pretty rapidly. Each replication cycle brings the a possibility of roughly 1:10,000 of creating a mutant. Once this is created either it exists. If it can’t reproduce it dies. If it can, and it is resistant then it will take it’s place in the population according to its fitness. If it is very fit we may be able to see and measure it (fit means makes lots of kids fast), but if it is less fit we won’t be able to see and measure it.

    THE FACT THAT WE CAN’T SEE ENOUGH TO MEASURE DOES NOT MEAN ITS NOT THERE!

    The key point is the the CREATION of resistance requires replication, so it happens BEFORE treatment starts.
    …..
    /

    Hello dr. Freeman,

    thank you for this answer.
    Indeed, thinking on resistance might be wooly, however the “(too much) thinking on these resistants” does exist in my case.
    During my IFN+RBV treatment my body could not clear the virus in the first 3 months of treatment (was able to clear it within the first 6 months of treatment). This makes me think that I was having perhaps some of these “resistant” viruses ….. Yet now with the SOF+LED treatment, my body was able to clear the virus in less than 4 weeks. So hopefully these “resistant” viruses were killed too.
    At this stage however the thinking (at least my thinking) is easily slipping from the science behind the drugs to the fear of “what if … one resistant virus managed to survive?”, which is a different perspective :). Well, 1 month + 1 week left till I will know the answer :).

    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

    in reply to: Highly detailed article on DAA resistance #22816
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    Just finished reading the article :+1: .

    I’ve reached the point to have a better understanding about why some patients do relapse and what these Resistant Variants are.
    From the perspective “risk of developing Resistant Variants”, I would say it is quite tricky to treat HCV for 8 weeks only (as Gilead is doing for non-experienced patients). I would not “play” with the duration of the treatment just for saving some money. Since the generic drugs are much much cheaper, it seems to be a non-sense to treat for a shorter duration just to save some dollars.

    Also interesting to see that NS5A inhibitor-resistant viruses may persist for years, potentially impairing the results of re-treatment…. This should be deeper thought and discussed with the doctor in case of a relapse, as just buying the same medicines for another course of treatment for “12/24 weeks” might not be enough.

    ……


    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

    in reply to: Prevalence of Resistance-Associated Substitutions in HCV #22815
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    Hi Dr. Freeman,

    thank you for this article.
    I have to admit that the information about RAS in this article is somehow puzzling for me, yet having been through the article, my understanding is that for a GT1 patient who relapsed after the SOF/LED treatment for 12 weeks, the alternatives are:
    – either retreat with SOF/LED for 24 weeks (which seems to lead to almost 100% cure rate) // however this information is somehow contrasting the information about re-treatment options presented here http://freepdfhosting.com/b3d39c5e48.pdf on page 14 – Ch. “Re-treatment Strategies after Failure of IFN-Free Treatment”
    – either retreat with SOF/LED+ a 3rd DAA ( which one might this be? VEL?, VOX?, DAC? ) for 12 or 24 weeks.

    Just an idea: would it be perhaps recommended and financially feasible, to treat GT1 patients right from the beginning with a combination of 3 generic DAAs? I would imagine that perhaps adding another ~100$ (that’s just an imaginary cost ) to the generic treatment costs, the risk of relapse will be very very low, so a GT1 patient who might relapse (if treated with SOF/LED only) could save some time, money and stress by not having to retreat.

    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

    in reply to: How to get a doctor to monitor your generic treatment #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

    in reply to: Tour n’ Cure #22757
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    This brings into attention a kind of vicious circle for treating the HCV:
    1. The healthcare system should ensure the treatment to those who are insured. But to almost anybody, the healthcare system is allowed to provide only the branded HCV treatment, which is expensive, therefore “anybody” is denied treatment and the best “anybody” can do is to seek alternative solutions (like the cheapper and effective generic drugs).

    2. Getting generic drugs delivered at home – affordable, comfortable, yet many have fears regarding the possible scams or breaching the laws in their own country. An alternative to this fears is to seek treatment through medical tourism, which on a first view, some might consider it provides a certain kind of trust.

    3. Getting generic drugs via medical tourism implies traveling (and the risks associated with the travel) and individual higher costs than point 2. or 1.

    Thinking on this:
    Point 1 = means waiting for an uncertain amount of time, thus the problem remains unsolved
    Point 2 = can solve the problem, but people can stay locked because of the risks.
    Point 3 = similar as point 2.

    The way out of such a vicious circle is to do something slightly different: why not research more about generic drugs, see how they work, see from where you could source it, make a list of options, identify the possible risks, think on what risks you may consider as acceptable and then decide FOR YOU!

    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

    in reply to: Highly detailed article on DAA resistance #22717
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    I’ve been reading so far 1/3rd from this interesting, yet challenging material. (Doctors use a complicated language :), no ofense dr. F)

    It is like talking about a microuniverse (well in fact it is like this) with different rules and some science fiction stuff… A Star Wars, with rebels and clones…. I look forward to read the rest of the material and see who in the end will have “the force”.

    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

    in reply to: isaing4 Twinvir story #22706
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    FELICITARI ISAING4 !!!!
    #Woohoo!

    Congratulations ISAING4!!!!
    If I am not wrong, you are the first or one of the first Romanian persons here on Fixhepc who got treated with HCV generic drugs. Congratulations for this as well.

    Perhaps you also noticed that in Romania people (still) barely talk about HCV generics and many either still have fears/doubts either are not properly informed about how to get treated with it, however you may be pretty sure, that your story will help and inspire others. THANK YOU for sharing your story and the excellent result you achieved!!

    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

    in reply to: Rohcvfighter reached EOT #22627
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    A reflection from today…..
    Someone asked me recently how has it been for me to get treated with HCV generic drugs.
    Honestly, I found it quite hard to answer to this question in just a couple of words/sentences, as there were so many things to tell… I gave a couple of explanations (which I hope were of a good quality), however the question was repeating and repeating in my head (“How could I describe my experience ???”…..).

    In the end, I decided to illustrate my experience as it follows:

    HCVGenericmetaphor.png

    Why is that?
    – it was not a simple journey and to many it (still) seems impossible – but to me and others from here, we know it is a “possible” journey;
    – I had to learn many things about the HCV generic drugs. And all this in a “hostile” environment for generic drugs;
    – I put my trust in people I never knew before (@fixhepc) and I listened to their belief that “GENERICS WORK!”.
    – the trip on the water to get rid of HCV by generic drugs had many turbulences (finding reliable sources of information, supply chain, overcome the fears), but with the brave people from here and an overdaring doctor, the “scaring” journey turned to be one full of adrenaline and fun!
    – talking about HCV and the generic drugs (here but also with my friends) helped me in better understanding my situation and gaining more confidence :)

    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

    in reply to: Fitz starts REDEMPTION 3 Trial #22620
    Avatar photorohcvfighter
    • Guardian Angel
    • ★★★★★
    @rohcvfighter

    Hi Fitz,

    welcome back :).
    I guess you have by now just a couple of days till EOT, right? :+1:

    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

Viewing 15 posts - 166 through 180 (of 338 total)