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  • in reply to: Médecines du Monde Campaign & Petition #23529
    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    If Gilead fears completely losing their market to generics, they may try to lock in a sale volume at a particular price before the court’s decision.

    That’s what was going on when they offered the Indian, Egyptian and Brazilian governments the $900 price. They specifically contracted the 11 Indian companies to tie their hands in case the patent process failed (as it did, but then got reversed.) They didn’t hold to the $900 offer in Brazil.

    They came to the bargaining table in Australia when they feared the word about generics was spreading too fast there.

    in reply to: discomfort in liver after tx #23528
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Well, I also had those sensations and the questions about my success. The sensations in the liver area came back occasionally (dull and mild compared to before) for a few weeks, disappeared, came back even milder, disappeared. But the sensations in the area right below my rib cage, (at about 2:30 if your stomach is 12:00), still comes back occasionally …. it’s there right now. It’s basically right below the scar where they took out my gall bladder. (The three point technique, whatever it’s called.)

    I’m past 38 weeks after EOT, had tests at 12 and 24, and also had full blood workup at 24, as well as a new ultrasound. I’m fine.

    I have to wonder …. could these sensations be the body destroying scar tissue and regrowing nice new liver cells?

    in reply to: worser and worser…should be a scandal #23523
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Just jumping back onto this thread with a curious little update.

    This is from a post way back on page 2 of this thread:

    klhilde wrote:

    I had a personal little debate battle with someone a year and a half ago on this very issue and I hope the #@(*@! remembers me and my predictions. I also wonder if he’s not the person at Gilead that got fired. (Mr. “he’s no longer with us” who’s name I’m going to be going back looking for later to see if I can determine if I’m correct.) The person I and others were debating took the handle “pharmaguy” and made the mistake of using the personal pronoun “we” when he got worked up, seemingly outing himself as a Gilead exec. (I still can’t prove that.)

    Read the comments in this article from the Wall Street Journal Blogs dated July 11, 2014.
    As is my custom, I used my real name in the comments. (click “view all comments”;)
    http://blogs.wsj.com/pharmalot/2014/07/11/gilead-faces-new-pressure-from-u-s-senators-europe-over-hep-c-pricing/

    But a few days ago I revisited that blog post … AND ALL THE COMMENTS ARE GONE!

    Damn, I knew I should have captured them … Should have used the WAYBACK MACHINE.

    Then I wondered … did anybody … maybe?

    THEY DID!!!!!!!

    https://web.archive.org/web/20150327063500/http://blogs.wsj.com/pharmalot/2014/07/11/gilead-faces-new-pressure-from-u-s-senators-europe-over-hep-c-pricing/tab/comments/

    in reply to: SVR24 #23521
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Haven’t been on so much lately, but I also want to congratulate everybody on their success.

    And I’ve got one more to report …
    For those who have been around long enough to remember Price’s newspaper story about VA meds access and our friend Zion, I had a short chat with him on FB about three weeks ago.

    He’s SVR 24 also. :woohoo:

    in reply to: Hep A and Hep B vaccinations #23520
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    • Guardian Angel
    • ★★★★★
    @klhilde

    As stated earlier upthread, I had the three shot A/B series … first shot before treatment, second in the middle of treatment, and third ended up well after end of treatment.

    I didn’t seem to suffer any ill effects. However, I still haven’t been tested to see if they have given me immunity.

    in reply to: One Year Later #23517
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Yes Mike, in some ways it seems like yesterday, and in other ways it seems like forever ago.

    For me it’s been:
    ~ 3 1/2 years since I got shocked by the diagnosis
    ~ 27 months since I argued online with (who I assume to be) a Gilead exec over pricing strategy and IP rights
    ~ 17 months since I found Greg’s blog (shortly before he left for India)
    ~ 13 1/2 months since I finally got the blood draw to determine genotype
    ~ 56 weeks since I joined the forum
    ~ 55 weeks since I jumped on the plane to Bangkok to get my fibroscan and ultrasound
    ~ 53 WEEKS SINCE I WALKED INTO DR. FREEMAN’S OFFICE UNANNOUNCED … “Here I am”
    ~ 50 weeks since I finally got my hands on the meds
    ~ 44 weeks since I got my first UND results
    ~ 38 weeks since EOT

    It’s been long enough to see the oilfield die and I quit my job there, went to Bulgaria for nearly a month and got dental work done (couldn’t manage to get a response from Slavi, but he was in the midst of a big national referendum drive), went back to Bangkok to see doctors about my peripheral neuropathy (nearly total waste of my time and money on that one).

    Wow … what a year it’s been.
    My bank account is about to zero now, but …

    [video]https://www.youtube.com/watch?v=sIxSWE4uCJg[/video]

    in reply to: FixHepC – Party Playlist #23294
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    • Guardian Angel
    • ★★★★★
    @klhilde

    This deserves wearing good headphones!

    Recorded live for television broadcast last Friday evening.

    Here we already have a translated lyric video.

    [video]https://www.youtube.com/watch?v=8_zYsli0Nmo[/video]

    in reply to: G3 Dacla/Sofosbivir from Mylan in India #22827
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Hi Neil, welcome to the forum. Yes, hundreds here, likely thousands of people have successfully used the Indian generics.

    First these points … The meds from Mylan are the equivalent of the branded drugs. All of the Indian Sofosbuvir, Ledipasvir, and/or Daclatasvir producers are in fact having their medicines manufactured by either Hetero or Natco and they are all proving equally effective. The unlicensed drugs from the companies in Bangladesh are also being shown to be equal in effectiveness, and it is almost certain that the drugs coming from Morocco, Algeria and Pakistan are as well, although we don’t have the data on those last three yet. In a couple months the results from 1,000,000 people that have been treated in Egypt with mostly Egyptian generics will be presented and the preliminary data indicate that again they are the equivalent of the branded drugs.

    So the question of quality, branded vs generic, should not be your concern.

    The issue your doctor is worried about is your genotype and your treatment experience. G3 treatment experienced people are having a harder time reaching SVR (sustained virologic response.) Additionally, people with higher levels of fibrosis/cirrhosis have a harder time getting the medicine into the scarred areas of their livers, where the virus can hide and then reappear after treatment. In such cases, it is generally advised to either lengthen treatment, change drugs, or add more drugs … maybe ribivirin, maybe an NS3 inhibitor … or two/three of these options.

    You haven’t told us your fibroscan score or viral load or any other blood test numbers, so it’s going to be difficult to tell you whether you would be best served to simply lengthen treatment or add more meds/different meds. But our doctor here, Dr. James Freeman, is one of the top world authorities on this issue, so if you put your further data here in this thread he can probably answer your questions.

    And if it turns out you should be taking Epclusa, (Sofosbuvir/Velpatasvir,) Beacon Pharmaceuticals in Bangladesh is already selling a generic form of this combination called Sofosvel. Beacon has provided meds for many, many people here and you can find their contact info in the top post of their thread in the Pharmas Market section of the forum … or click here:

    http://fixhepc.com/forum/daa-access/439-beacon-pharmaceuticals-sof-dac-sof-dac-sof-vel-combo.html

    Again, welcome to the forum.

    Edit: It might also be helpful to know where you live on the planet.

    in reply to: Sofosvel (velpatasvir) #22596
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Because I need a permanent record of this statement.

    MonkMed wrote:

    UPDATE: July 27th 2016

    As per the current timelines GILEAD Licensed Velpatasvir will be available in early September 2016 in India. Epclusa( GILEAD Velpatasvir) is already licensed to Gilead’s 11 Indian manufacturing partners which includes top brands like Mylan,Cipla & Natco which have undergone a complete transfer of technology(TOT). https://en.wikipedia.org/wiki/Technology_transfer.

    Licensing does not mean just a business aspect of royalty sharing but more importantly ensuring the quality of the licensed product is exactly same as that of the original pill. This aspect is ensured by rigorous TOT which is explained below.

    A complete technology of transfer(TOT) means the process of manufacturing of the pills is exact same as of the original GILEAD pill not just limited to the API but aspects of Excipient which is the NON API materials that goes into the manufacturing https://en.wikipedia.org/wiki/Excipient.

    https://en.wikipedia.org/wiki/Mylan.

    On top of all the above all Indian manufacturing units that manufacture or sell Licensed products are US FDA certified and have to keep up with rigorous standards also called Current Good Manufacturing Practices (CGMPs)

    http://www.fda.gov/Drugs/DevelopmentApprovalProcess/Manufacturing/ucm169105.htm

    Currently DCGI (Drug Controller General of India) approval for generic Velpatasvir is in process as the 11 Indian companies are gearing up production for early September launch.

    in reply to: cirrhosis #22595
    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    “So long, dear, I’m just off for a week in the sex capital of the world”
    :evil:
    :whistle:

    Okay, seriously, yes I’m completely aware of that tired characterization of the world’s third most visited city, after London and New York. I guess the combination of my being single and being Rational Temperament enables me to be fairly easily dismissive of the judgement of others …. basically fuck-um … if that’s the limited depth of their thought process, what do I care what they think?

    However, you’re married, so the perception matters.
    Easy solution, costing maybe 60% more …. take her along. It’s an amazing city.

    And mark my words …. the next Asian Tiger will not be Indonesia, Malaysia or the Philippines. The next Asian Tiger will be Thailand. Get there before they get rich … these rock bottom Medical Tourism prices will not hold forever.

    Spoiler for
    The Japanese, the Koreans and the Chinese are pouring money into the place. Those brand new malls with their Status Brand stores are not being built for westerners, they are aimed squarely at the Chinese tourists, and the slightly older malls were aimed at the Korean and Japanese visitors/expats. The mall at Ekkamai station … took me about ten minutes of wandering around before I made the mental click and realized it was built by Japanese investors, for Japanese buyers. If I had never been to Japan, I might not have realized it. But if you do go, do not miss the Helix Quarter at Phram Phong station. The entire EmQuartier (including the Emporium on the south side of the road and the brand new buildings on the north) are aimed directly at China’s newly wealthy. I’m too tight with my money to be spending it that way, but I went back several times just to see it.

    As for the sex industry, be aware that Japan’s dwarfs Thailand’s and that both China’s and India’s dwarfs Japan’s. Also be aware that the perception of Thailand as a sex-tourism capitol is predominant in those cultures/countries which have been heavily influenced by ignorant/arrogant English/Victorian notions about sex, evolved from Puritanism and a distinct class-concious snobbishness. Where else (except the Muslim countries) would anyone invent a “bathing machine?” (and now they get upset by burkinis … :blink: )

    Anyway, the hospitals in Thailand have highly trained doctors, (mostly fluent in English,) with spacious, comfortable and nicely decorated waiting rooms, the latest medical equipment, and an over-abundance of staff in their perfectly pressed uniforms with hardly a hair out of place and a professional, courteous, even friendly attitude, (ever-ready smile) … all prepared to make your visit as smooth, fast, efficient and painless as possible.

    They put most American hospitals to shame.

    Compare that with Greg Jefferys’ description of his experience in Chennai.

    Yes, there is still poverty there, with (small numbers of) the expected touts, beggars and occasional corrupt cop … and yes, if you go looking for them there are plenty of women available too. Just don’t go to those areas and you’ll be fine.

    in reply to: cirrhosis #22569
    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    It does seem both that the surgeon exaggerated and that the zero fibrosis result is doubtful … so yes you want to know. Don’t know how soon you need to know though, that’s up to your personal comfort level, and only you can answer that.

    I’m guessing by your use of “bush” that you’re in Australia and likely somewhere west.

    Also, I don’t know your financial position, but …

    A fibroscan shouldn’t be too terribly much money to self-pay. However, if the prices are high there and you have money to travel …

    I got two consultations with a doctor, an ultrasound and a fibroscan … (along with a transfer-van ride to/from my hotel) … at Vejthani Hospital in Bangkok for less than US$250 and within 24 hours of landing …. (on a Saturday and without an appointment before landing) … total process at the hospital took about 4-5 hours, and answers were immediate and in clear English.

    Bumrungrad Hospital is the bigger, more famous medical tourism hospital there and someone else on the forum has used Samitivej Hospital. Prices should be roughly the same, maybe more at Bumrungrad. There are several more there you could search for, but here are three links.

    http://www.vejthani.com/index.php
    https://www.bumrungrad.com/
    https://www.samitivejhospitals.com/sukhumvit/

    Google flights says you can leave from Perth on the 2nd, round trip for US$227 …. or from Sydney for US$309. Check google… (be aware the discounters land at the older airport in BKK and the layover in KL might be longer too.)

    If you’re willing to walk a few blocks away from the skytrain, 3 star hotels can be had in the US$22-29 /day range. Farther from mass transit is less, but harder to get around … stay within a few blocks of the skytrain. Easiest to get around would be to stay near Sukhumvit Road. (It’s where all the giant, brand new malls are too.) Use an online booking company that has maps (Hotels.com) and look in the Asoke or Phrom Phong areas.

    And who knows … a few days eating Thai food might be good for your liver! :P

    in reply to: What’s your personality type? #21234
    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    She’s off to save the world again, she’s off to see the sea
    She’s off to find herself now and to see who she could be
    And though I wish she’d stick around and spend some time with me
    It’s not to be
    It’s not to be

    She views life’s vivid colors but has trouble seeing grey
    Her universals speak in black and white, as if life were that way
    And I could overlook all that if she would only stay
    But there’s no way
    She’s on her way

    She can make the sun shine all around me
    She can bring the moon up all aglow
    But I know that sometime, in the darkness
    She’ll go

    She can’t say where she’s headed or just what she hopes to find
    I could offer perfect logic, but it wouldn’t change her mind
    And this process of “becoming” seems to be the lifelong kind
    To grow and be
    To go and see

    And everywhere that she goes goodness follows
    How the hell she does it, goodness knows
    In the end it doesn’t really matter
    She goes

    Will there come a time when she stops running to and fro?
    Could she find herself and then stop searching high and low?
    Should I hold to some ray of hope, or should I just let this go?

    And I don’t even know
    I don’t even know

    She’s off to save the world again, she’s off to see the sea
    This “global mother” instinct of the Idealist psyche
    And though I’ve tried to tell her she could stay here and save me
    It’s not to be
    It’s not to be
    It’s not to be
    **************************
    She
    ©2009
    Kevin Hilde, INTP

    My interest in Temperament Theory goes back to late ’00 or early ’01.
    It’s amazing how many things I understand now that I didn’t before studying temperament …. and socio-biology.

    in reply to: Activism #20514
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Hey Cheese, I don’t know if you’ve used the PM tool here yet, but the button is top-right under the tabs menu. I just sent you a PM.

    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    I’m not sure where you sourced your treatment, but if it’s from MonkMed, I’d get on the phone with Tim and arrange a talk with one of their doctors. If not, and you can’t see your local specialist or GP, then I’d get an online appointment with Dr. Freeman at GP2U.

    All that said, ……….. be clear that I am NOT a doctor, and you should treat everything I’m about to say as speculation ……..
    I’ve come to the suspicion that Hep C creates an environment which leaves people susceptible to bacterial overgrowth … usually Candida Albicans. I suspect some of the symptoms associated with the Hep are really Candida symptoms. It would explain things like the gastric issues we see on treatment, among many others. If you have a Candida overgrowth it can also be in your mouth. You might want to talk to the doctor about that. In any case, a quick treatment with Nystatin will wipe out most of it, but you would need to use some as a rinse for your mouth. Nystatin is not absorbed into the body so can only reach what’s in your intestinal tract. For anything more advanced you would need an absorbable drug, typically fluconazole (which is hard on the liver.)

    Maybe Dr. Freeman will pop in here and give you some advise.

    in reply to: Bill Gates on Patent Laws #20324
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    • Guardian Angel
    • ★★★★★
    @klhilde

    Ya cheese, sorry to go off topic but…

    I was speaking with a doctor at Vejthani a short time ago. I explained my choice of sof/dac was as much political as medical and she said that yes they could get that there now. I said, yes but could she get it for $1000 or was it more like 6-7 thousand dollars? She kinda looked at me funny, and the conversation changed to a different subject. A few minutes later, as I was getting ready to leave, she walked off for a minute and returned with a piece of paper with a bunch of calculations on it. After running through those calculations and converting at 35 baht to the dollar it was a total of US$15,768 for 12 weeks of sof/dac.

    Now I don’t know how easily an average Thai can get a passport, but a flight on Malaysia Air through KL to Dhaka is currently running $243rt and a rt direct flight can be found in the $350 range. Add in the $700 price of 12wks Darvoni and it’s ~$950-1050. I bet a bus ride to Myanmar could move the total price even lower.

    And I bet very few people in Thailand have any idea they can do that.

    You were looking for activist ideas, right?

Viewing 15 posts - 16 through 30 (of 223 total)