Forum Replies Created
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Hi Sven,
as the name of this thread says, it is a “Whack-a-mole” game
. The funny part is that on our side, we may also play the “Whack-a-mole”.
Why is that? Because as long as the healthcare system, Big Pharma, uninformed or miss-informed medical staff are playing the song of “legal compliance”, “ensuring low risks for the benefit of the patients” and all such things, an HCV patient can / may play also the song of acting with legitimacy in order to get cured.
What I had in view in my case when I decided to get treated with generics:
– it was MY LIFE in charge so the decision to use the generics was mine.
– it was/is my right to be healthy (see Universal Declaration of Human Rights)
– it was my money in place. I was aware from the beginning that I will not be refunded any cost (nor for the drugs, nor for the blood tests), but as long as I pay for the blood tests, I should receive the results.
– thanks to dr. Freeman and Greg, I found out that via Art. 60 from TRIPS, the path to get the generic drugs was in compliance with the legal provisions.So, now it is my turn to play “Whack-a-mole”:
– I reached UND with generic drugs. As of today I have several weeks to wait till week #12 after EOT, however I do believe that it worked very well.
– I did not had to wait (not anymore) for the mercy of the healthcare system or the Big Pharma and I got treated with an affordable cost. Every time I say these to people around me, everyone gets amazed and say the “WOW”.
– whenever someone tells me that the generic drugs might be fake, or not efficient or illegal, I take my “hammer” and talk about me being UND, the importance of the supply chain integrity for generic drugs and the Art. 60 from Trips. And last but not least the results presented by dr. Freeman at ILC Barcelona, the trip made by Greg Jefferys to India, etc.Yes, I do agree that many people (doctors or not) are still very reluctant to the idea of generic drugs, however the fact that they are reluctant it is NOT because the generic drugs are having an issue, rather it is their own (I would say wrong or incomplete) perception about the generic drugs.
P.S. sorry for all the bolds and underlined words in this post.
Cheers,
RHF
Hi B.,
thank you very much for posting this message.
It gives (at least to me) the peace of mind to wait with patience till reaching the 12 weeks after EOT.
I found also quite difficult the period that followed the EOT as the level of anxiety increased (having “ghosts” of possible relapse and no longer having the “shield” of the drugs – it makes me feel like sitting outside in the rain, not being sure whether I will catch a cold or not ).
I also kind of “stressed” some guys here on the forum asking them (via PM) how they felt and they were very kind to answer and encourage me. Many thanks to all of them.Cheers,
RHF
I created my Twitter account and enjoyed reading the fixhepc tweets
(well done dr. Freeman & Fixhepc team !!! )
I does not seem to be complicated at all.
For those who had no experience so far with Twitter, here is a short “definition” about what Twitter is (from Wikipedia):Twitter (/ˈtwɪtər/) is an online social networking service that enables users to send and read short 140-character messages called “tweets”. Registered users can read and post tweets, but those who are unregistered can only read them. Users access Twitter through the website interface, SMS or mobile device app.
Cheers,
RHF
Hi Tina,
Congratulations!
Cheers,
RHF
Hi Tina,
I would be fine
Thank you for this great and also funny idea,
Cheers,
RHF
Hi Tina,
Haha, yeap, that might really work quite impressively
.I am trying to imagine how challenging it would be to place a translated subtitle on the video :d.
How can this guy be contacted
.Cheers,
RHF
Hi GF,
that’s a great article, I kind of liked to read that the HCV market for Gilead, Abbvie, etc is shrinking, as the market for generic drugs is in fact increasing
.
I struggled a little bit, but I was finally able to place couple of comments (but not all that I prepared, some where not uploaded…like the link to the press release from ILC Barcelona regarding the HCV generic drugs
).Cheers,
RHF
Hello dr. Freeman,
Great idea, for sure spending some minutes on Twitter, watching some tutorials, will develop the necessary skills. At least this is what I will do.
With regard to the fact that spreading the news is becoming problematic, I see things slightly different:
– ~1 year ago the idea of treating HCV with generics was ridiculed/disconsidered by many
– today it is fiercly opposed, as you already experienced (and also others)
– “tomorrow” the world will admit as self-evident that HCV will be eradicated via generic drugs.When a fight is weak, most people are not even aware of it, but when the fight intensifies, it does make people aware of it, so…. I take the current status quo (“generics being fiercly opposed”
as a good sign for the way the news is spreading.The World Hepatitis Alliance, having also Big Pharma companies as sponsors, already recognized (indirectly) that generic drugs are effective and advices governments to make use of voluntary licensing and flexibilities of Trips to treat HCV patients.
http://www.worldhepatitisalliance.org/en/news/jul-2016/treatment-hepatitis-c-has-more-doubled-2013-yet-99-people-are-still-being-denied-life -> here the above mentioned statement needs to be read between the lines.In the end, I would add that when a fight intensifies, both sides are incressing their efforts, thus fighting also on Twitter is a great idea !
Cherrs,
RHF
Hello dr. Freeman,
the picture describes perfectly the reality
.
One remark: you used the “wrong” picture having too few moles. To me it looks like you “accidentally” took the picture of Big Pharma trying to justify the high prices and the generic’s hammer hitting their heads to lower the prices. The “real” board for HCV generics must have by now hundreds/thousands of moles with Big Pharma desperate in trying to hit all the headsP.s. a picture to start a nice day
RHF
Hi Gaj,
well said
. I would have couple of points to add:
When thinking to eradicate a disease, the main drivers that I know are: awareness, prevention, diagnosis and treatment (this one being by far the key to solve the problem).
I do agree with the fact that people need to become aware of HCV, to know about prevention means and how to get diagnosed. So the advocacy groups are quite welcomed to do their part here and I am happy that they exist. However, when talking about the treatment, this is the point that makes the difference and reveals the true intentions: acting for making profit or for eradicating the disease. And this is also the point that reveals the nature of the advocacy groups: puppets of Big Pharma or true fighters of HCV. Up to the point of treatment, distinguishing between them is not so easy, but when discussing about the treatment options, things become much clear.
When an advocacy group (like the one that is very active today in Romania) starts complaining about how hard it is to negotiate with the government (well, I do believe it is) and is illustrating that people proceed with desperate measures by buying (generic) drugs over the internet, drugs which they claim are very often fake in order to increase the pressure on the government to allocate more money, but at the same time DOES NOT USE the opportunity to push forward the idea that CHEAP & EFFECTIVE GENERICS MAY TREAT PEOPLE IN MASS, this tells me that such an advocacy group is a Big Pharma puppet.
In principle, the main goal of an advocacy group must be to ensure that more and more people can get treated, thus it should not waste the opportunity provided by the generics, rather it should seek how people could access the “real generics” knowing that on the market there are scams and fake drugs.At this stage I can say that I am really thankful to Greg for his blogs and to Fixhepc for providing this space for sharing information as it enabled me to have trust that generics will work and guided me on how to source my medication.
Cheers,
RHF
Hi FHN,
A quick thought that maybe helps you:
– having HCV might means you have a lot of worries or a tendency to have many worries.
– having also HIV may increase this tendency of having worries.
So… why not trying something different?
Getting treated for HCV means you will remove at least one worry from your head, so why not put in a place a dream or wish you might have? Do not replace one worry with another worry.HCV plays more or less with people’s minds, so the good thing is that once HCV will be gone, you will have a better control on your life and mind and better times to think on solutions for all other problems.
Stay positive, you are on the right track. Allow yourself time and do not overstress
.Cheers,
RHF
