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Even if the field of politics is very broad, the politicians are very limited as they are “constraint” to serve the interests of certain groups.
Unfortunately the “mass group” of HCV patients is not in the sight of the politicians, except when it can be used to manipulate people’s minds and votes.
There exist one strong force which politicians fear, the civil society. The problem with the civil society is that it is hard to organize, nevertheless it is a pool of increased creativity that may deliver unexpected & original results.
We saw a recent such case in Romania with a guy who came with a car registered in Sweden having a trivial car plate number, against the rulling party from Romania (it can be translated as “F*ck P*D” (the brief story here http://www.balkaninsight.com/en/article/romanians-return-home-for-anti-govt-protest-08-08-201.
Even though having such a plate is not polite, the action revealed something else: the obedience of the authorities, especially the police, to the rulling party who confiscated the car plates, suspended the driving license of the guy and opened an official investigation against the driver, claiming he broke a certain law.
The civil society got mobilised and many people started to research that law and quite fast it was found out that the police missed the fact that that law which “was broken by the driver”, was updated 2 years ago and that in fact the driver commited no crime. The accuses were discharged and the driver got back his driving license.
The unexpected outcome of this story is that for RO people this case was a demonstration that in politics the rulling party is not always right, it only has more votes than the opposition and furthermore, the ruling party may be exposed by the civil society and forced to make what is right.Who knows, maybe one day the civil society will mobilize to help the HCV patients to have access to medication.
Hope is not lost
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 achievedCongratulations Splitdog,
Wow, what a great news!
I am so happy 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 achievedHi Tanya,
my experience was that I had some slight side effects in the first 3 weeks of treatment, but the rest of the treatment till week 12 went without any other side effects.
About the anxiety, I experienced 2 kinds:
– between EOT and SVR12 – I was worried about a relapse …. yet I kept telling myself I should simply wait and see what happens, being prepared to do another course of treatment if necessary.
– the second one happened after ~6 months from the EOT. I experienced the pain I was having several years before when I relapsed after the interferon treatment. Panic, loss of sleep, etc. I talked to dr. Freeman and he gave me couple of good advices which enabled me to understood better what was causing me the anxiety.So, if your pain is related to anxiety and not to other cause, have patience, try to understand the nature of your anxiety and …. avoid resting too much . In my case it helped a lot to do various activities no matter how hard it seemed to be. Staying still was far worse than being active.
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 achievedHi GillA,
I guess it depends on what drives you to get checked.
In my case, I prefer to do the 6 months check just to know that I am doing fine. In case something would not be fine, I would have a higher chance to fix the health issue by starting earlier to treat it, before things get worse.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 achievedPerhaps a little bit off-topic, but I think it is the first time when we may see a clear message in the Easl journal that generics provide similar results as original compounds:
Licensed generic drugs and drugs agreed with the Medicines Patent Pool have been shown to generate similar results to the original compounds. The presence of the drug at the appropriate dosage must be verified by the provider and guaranteed
to the prescriber and patient. Indeed, effective and safe generics are a crucial resource in resource-limited countries.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 achievedHazel wrote:Please help! email me any thing at all that occurs to you.
…..
*I will not identify anyone unless they expressly ask to be named, tell me what you would like as a credit, eg, funny joke from MG, USA, or whatever. If you want to send me someone else’s great post you remember, do, try ask them yourself or I will just make it anonymous anyway.My understanding from Hazel’s post was that in fact she is inviting us to send her something that is/was related to our own personal experience and then to let her know if we really want our names to be published too (otherwise it will be kept anonymous).
In addition to this, in case someone would be thinking to send to Hazel a post written by somebody else, that someone is invited to ask the permission from that somebody, yet as a safety measure in lack of such permission, the post would be made anonymous by Hazel. As this could be quite tricky, @Hazel: may I suggest that in case no explicit consent is given by the person who wrote the post, such post should not be used, even if it would be made anonymous?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 achievedre_roll wrote:In any case, it appears the urgency has dissipated……. Gilead is not the “bad” guy anymore,
pricing gouging comments have declined, uncaring USA GI doctors, etc. etc. etc.I do not think Gilead is not “bad” anymore…. I would say they just suffer a side-effect of their high price policy and the fact that the healthcare systems do not afford to treat all patients and thus limit the access to treatments. If you look at Gilead’s financial statements for 2017 you may see:
HCV product sales, which consist of Harvoni® (ledipasvir 90 mg/sofosbuvir 400 mg), Sovaldi® (sofosbuvir 400 mg), Epclusa® (sofosbuvir 400 mg/velpatasvir 100 mg) and Vosevi® (sofosbuvir 400 mg/velpatasvir 100 mg/voxilaprevir 100 mg), were $1.5 billion for the fourth quarter of 2017 compared to $3.2 billion for the same period in 2016 and $9.1 billion for the full year 2017 compared to $14.8 billion in 2016. The declines were across all major markets.So a drop of sales, but it is not clear whether they treated the same number of patients as in 2016.
According to a recent news available in my country, the government contracted a number of 12 000 treatments for the year 2017 (where it is estimated that more than 600 000 people have HCV), but managed to treat only 7 000 people. The treatment is provided to F3, F4 patients and the F2 patients having certain complications. This means a huge number of patients are not eligible to receive the treatment. In addition to this only few people know they have HCV and from those who know that are sick and do not meet the criteria for getting the free treatment, the solution of generic HCV drugs via parallel importation looks as a good option. Why wait till you got sicker to meet some stupid “access to treatment criteria” when you can get treated cheaper now?
P.S. I think we are getting tired in telling over and over that governments should remove the stupid access to treatment criteria and have a closer look to generic HCV medication.
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 achievedHi Hazel,
That’s a very nice and challenging idea, I will make some thoughts about what to send you (there are so many things to tell and it will be difficult to summarize 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 achievedHi JohnSmith,
You raise an interesting question, I hope I can summarize my experience in a helpful way for you:
– before treatment – I had many questions, some doubts whether generic drugs really works and whether it will harm me. Dr. Freeman and FixHepC forum members helped me in gaining trust I could get healthy again, so I decided to start the treatment.
– during treatment – in the first 3 weeks I had some minor headaches and a little bit of insomnia. Starting from week 4 no noticeable side effects.
– after treatment till SVR12 – I got anxious in knowing whether I was really cured…. Not taking the pills anymore made me feel at risk .
– after SVR12 – life is on a normal track, I have a normal life with all that this means (yet I am still cautious about what I eat and drink – everything with moderation).I hope this helps,
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@beahavan…. it makes me sad to read it… and at the same time it makes me think that it will open the door to more abuses and blackmail towards those who need medical services. I remember some cases that were presented several years ago in television when some patients were denied medical services (for instance dental work) because the patients were having a hard to treat disease.
We live already in a society where stigma (of various origins) is met very often and such things will do nothing else but to increase it.
Education is necessary to fight against stigma and I am not referring to university studies, rather to the simple fact of listen and learn from those who know (and if possible, also do some research) and then to seek to teach others. And this can be done on all levels in a society, it requires only to have an open attitude towards learning & communication.
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(Most of the) politicians are like a flock of sheep: they occupy a position in space and blindly follow the path where the flock goes, applying often the law/rules by the book and not by the spirit, bringing no contribution to the wellness of their citizens.
From time to time we see some “rebels” who are able to make a difference. Too bad they are so rare ….
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 achievedHi Vororo,
YOU WILL WIN THIS BATTLE!
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 achievedA very sad news and a very big loss…
I feel honored that I had the opportunity to know him here on Fixhepc and to have asked him several times for his advices. He was always willing to help someone, very wise and a real moderator in the true sense of the word.
@Ariel: please let people know that Gaj’s wonderful work spread all over the world and that someone here in Romania will miss him ….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 achievedHello dr. Freeman,
I think I am doing a mistake somewhere as I always get the video with English captions…
I did remember an alternative solution so that one can see the video with the desired subtitles in a web browser:
1. On Youtube (no need to be logged in) we locate the video and then make a click on “share” and then on “embed”.
We will get a string in which the https part is relevant for us2. To the https string we add the string “?ecver=2&hl=ro&cc_lang_pref=ro&cc_load_policy=1” where “ro”is for Romanian language and may be replaced with other strings (“es” for spanish, “fr” for french, etc).
3. We may copy the string in a browser and see the video.
The video with Romanian captions may be accessed here:
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 achievedI’ve seen the video has subtitles that have been translated in quite many languages.
Unfortunately this is not that visible (one has to know how to activate the captions on youtube and then select the language for the subtitle).
Perhaps an idea would be to create playlists for each language (italian, french, romanian) so that the video would be shown directly with the captions. I am not sure how this could be done or if it can be done…..
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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