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TOPIC: HCV drugs made in Asia - news on a Romanian public television

HCV drugs made in Asia - news on a Romanian public television 4 years 8 months ago #23672

  • rohcvfighter
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Recently there was a news presented in Romania on the public television about the HCV drugs being made in India.
The video (RO language) is here: stiri.tvr.ro/bolnavii-de-hepatita-c-recu...terferon_814336.html
The news was made in the context that in Romania there are these days negotiations for a new protocol to treat HCV patients and according to some information sources, it is estimated that about 10 - 12 000 people will be treated this year. It remains unclear what will happen with the rest of > 590 000 patients...

Despite the fact that the article is not really on my taste - as it depicts the fact that the patients undertake risky situations, bla bla, it does mention couple of key facts:
- one patient declared he got cured with medicines from India (yuppy)
- people are informed that they can go to India to get cured via medical tourism (yuppy, however the price of 11 000 euro mentioned in the video is way too high)
- one doctor admits that this solution is not optimal, but as long as the medicines are registered and the patient is monitored by a doctor, it is fine (sounds like a copy of dr. Freeman speaking :) ). And even more, the doctor mentioned that if these 2 aspects are being met (the patient using registered drugs and being monitored by a doctor, they - the doctors - cannot restrict this.). Pretty well said :+1:

For Romania, seing this news on a public television is in any case a step forward: at least it was mentioned on a public television about the hcv medicines made in Asia ....

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
Last Edit: 4 years 8 months ago by rohcvfighter.
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HCV drugs made in Asia - news on a Romanian public television 4 years 8 months ago #23678

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Thanks RHF,

Not knowing the Romanian language it is difficult to pick up any subtleties in what is being said. It seems good news in that people will now be aware of the Indian medications, that they work and that (some) doctors will support patients using them.
11,000eu is displayed on the screen the whole time which is maybe not so good as I imagine for the average person that is still totally unaffordable? But it looked like that is a complete tourist package price for a "holiday to India + medicine" so hopefully people will be encouraged by that and some will look at whether they can somehow "do it themselves" for cheaper. Are there any Hepatitis support groups or forums over there that can help spread the word about what the true costs are?
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
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HCV drugs made in Asia - news on a Romanian public television 4 years 8 months ago #23679

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Hi Gaj and tohcvfighter
Someone must be pulling your leg about the 11,000eu, unless they are talking about being in India for a very long time.
rohcvfighter, if someone is pulling your leg it means they are testing your gullibility
Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
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HCV drugs made in Asia - news on a Romanian public television 4 years 8 months ago #23681

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beaches wrote:
Someone must be pulling your leg about the 11,000eu

Yep, you bet someone is! Somewhat surrprisingly it seems to be the nice tourist agency manager that they interviewed, who'd of thunk itl!!! :evil:

The problem is that having that ridiculous price splashed across the screen for most of the news items may cause many people over there to believe it's true. (don't forget that the 'originator' price for these medications in Europe is 3-4 times that price so 11k may look cheap......but it's still totally unaffordable to the average Romanian.)
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
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HCV drugs made in Asia - news on a Romanian public television 4 years 8 months ago #23682

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Hi Gaj & Beaches,

yes, you are right about the ridiculous price of 11 000 Euro shown there - even though this is the price of a nice 1 week vacation in India + medication. Last year, when I was searching ways to get treated, the price of this medical tourism agency was 12 000 Euro :). For a Romanian person 11 or 12 thousands Euro is a huge amount of money. However, there are several BUTs.

1) Before getting to know about Fixhepc or Greg Jefferys, in my searches of how to get treated, I was often seeing this medical tourism package and the "lower" price by compare with the price for the branded medication pushed me to search further about how I could get the generic medication. So .... in the end, it was "pretty good" to me to see the information that the drugs from India are effective.

2) There exist in Romania a support group for patients having all types of hepatitis, however I've never heard this group talking openly / honestly about the generic medication for HCV. What I see very often from the president of this support group is a constant demand addressed to the government for more money in order to treat more people and at the same time the president declares often that the patients proceed with desperate actions and risk their lives by ordering the medication over the internet. Personally, I do not like how this president it doing such talking because instead of pushing forward the idea that more people could get treated for less money with the generic medication, the only thing she does is to scare people in not proceeding with the generic medication and many are perhaps convinced to stay ill and wait.

3) In the past year, I was looking at the various news on TV in Romania about hepatitis C and nobody (till recently) was talking about medication from Asia / India. It was like people (especially doctors) were some kind of puppets talking about the treatment of hepatitis C in general and struggled to not speak about the solution coming from Asia. As far as I know, this video would be the first one (maybe I am wrong, but I doubt) being shown on a public television talking about HCV drugs made in Asia.

Overall, I am not too happy about the content of the video, but for the moment I prefer to see the "full half" of the glass: on a Romanian public television it was mentioned that HCV medication from Asia can be used to treat HCV.

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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HCV drugs made in Asia - news on a Romanian public television 4 years 8 months ago #23683

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Hi RHF,
What a strange tale! I think you are right to be "glass half full" about it, though, because it generates awareness of the issue. Enquiring people may choose to look into it further and as Gaj says you may be able to get the news out there via patient support groups or forums. Do you know any journalists or could you approach one or two with your story - just email them? Perhaps you could use someone else's story if you don't want the publicity personally? People find it easier to relate to a real person.

Although it is frustrating, I have come to the view that some people just don't want to do the unconventional thing and source drugs from overseas. There are a couple of people I have encountered on UK forums who seem very upset and worried about their HCV infection but even though you tell them what they can do about it, still do nothing. They seem more comfortable complaining about the inadequacies of the NHS rather than doing something for themselves. Perhaps they are scared? I don't know.

Good luck anyway,

RSF
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
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HCV drugs made in Asia - news on a Romanian public television 4 years 8 months ago #23685

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Hi RSF,

I guess journalists in RO are not so much interested to publish such news and this may be related to various factors (their view on democracy, issues related to the freedom of speech, lack of interest, fear of breaking some "unknown" law, possible conflicts with Big Pharma, etc.).
Talking about generic medication for HCV implies that one should seek reliable sources of information and I guess at this point many get stuck and it becomes easier for them to simply neglect the solution provided by the generics. In this context, the major role is being played by the doctors to clarify people about it, especially that the voice of a doctor is by far much stronger and reliable than the voice of a "crazy" patient like I was.
And because doctors are (still) silent, many patients do not trust (yet) the generics and prefer to wait.
Things will change, too bad that during the time the things will change, people will continue to die or suffer because of HCV. This is really sad.

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
The administrator has disabled public write access.
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