Forum Replies Created
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Hi LG,
Excellent result and very amazing that it is written “redemption trial”.
. It is great that you post this small piece of information! To quote Neil Armstrong : that’s a small step for an ex-HCV person, a giant leap for mankind!!!
I am so happy for you! (Another glass of champagne perhaps?)
Cheers,
RHF
Hi Sven,
feeling well is a good indicator (imho) even though some might say you should trust only in the blood test results
.
I look forward to hear about your news
Cheers,
RHF
Hi Ariel, Beaches, Nads, GF, Tommy,
thank you so much for your kind words. I’ve never felt so much freedom to talk about hep C, generic medication, treatment, experiences, as here on Fixhepc and the explanation for this is in fact ALL OF YOU (including our doc of course
– a brilliant pioneer) .Cheers,
RHF
Hello Nadia,
great thoughts, thank you.
It made me think on some maths:
– I was one of the patients being sick more than 13 years (perhaps 20 or 30, but I am not sure).
– currently, in my country, only 1.5% of the HCV patients have the tiny chance to get treated next year (about 10 000 out of 600 000) via the NHS.
– I was one of the others 98.5% who did not qualified for the treatment (you may also say I was outside the system).
– One day, a stranger, an Australian (Greg Jefferys) made a trip to India, got treated with generics and … shared his story. In only one year his story inspired others ( thousands I would say), me included.
– One other day, a doc founded FIXHEPC, a place from where many people (tens of thousands I guess) already got useful information and thousands of them got treated. For sure other tens of thousands will follow soon. Perhaps next year we will be talking about millions ?
– Each of the thousands who got already cured or are currently under treatment let the people around them know about the generic drugs (one tells perhaps to other 10 people, 20, 30…..about the generics). Try to multiply these numbers to see where you get ….Maybe for someone who never got sick with this disease or another difficult one, the numbers from above are simply numbers.
But when you’ve been through this ugly disease and got cured, you cannot stop thinking how meaningful it was what those (few) before you did and how it will change in good the life of others (many) in the future…..Words cannot properly describe how this feels, but gratitude is one of it.Cheers,
RHF
LondonGirl wrote:Thank- you Dr F, sabrecat and ftz
I hope those who read my (rather long!) blog can gain confidence and faith in taking this pathway to better health.
……
I wish good health and happiness to all !LG
Hi LG,
You can be sure that your story does inspire others! I am one of those who, before deciding to get treated, read your posts and it helped me because it was information coming from a patient. Somehow I was in a need to read it.
HCV is an extremely complex case and one needs as much support can get. I do not wish to imply that the information I got from Dr. Freeman was not enough, actually it was more then enough, however I felt the need to know the stories of other people being like me. Therefore thank you very much for sharing it!
Cheers,
RHF
I just found this thread and made some reflections…
I would like to write here about the things related to my person that enabled me to get treated:
– Knowing I cannot be treated via the NHS system, made me think that I have to “do something different”
– I had to start asking questions about the generic drugs – thankfully I could find this place and a doctor who does answer to e-mails
– I had to challenge myself to step out from my comfort zone ( it would have been so easy to just give up, do nothing and simply wait for the mercy of …. whoever could have decided the treatment for me… ) and take a decision for me.
– I had to break many boundaries for getting treated with generic drugs (not being afraid that I might break the law (was not the case), not being afraid that I could lose the support of my doctor, not being afraid that generics might be scam, handling not only my own fears but also the fears of friends around me, deciding to invest my money in the “uncertainty” of generic drugs, etc)Strangely, for other cases I do not argue so much whether to take a generic pill or a branded one. I take the generic one (like aspirin) as I do not want to pay 5x – 10x more for the branded one.
RHF
I think that the existing patent law leads to this type of discussions where it is extremely hard to ascertain which is the right price for HCV drugs or other drugs. Innovation needs to be rewarded, I am perfectly fine with this. The question is: up to which extent?
The price war between the branded drug producers and the generic drug producers is full of strategies on how to forbid the entrance on the market of generic drugs. And this happens when the laws allows this and give the branded drug producers a much higher power than necessary.
Changing the law to reduce the power of branded drug producers will solve on one side the problem of the patients who can not access the medication and …. I would also believe that it will boost innovation.What we are living these days is a kind of “bubble” in the pharmaceutical industry which, as every bubble, will burst in the end. The problem is that no one can predict when this will happen. However things cannot continue indefinitely, to have high prices and a massive number of untreated patients as long as the manufacturing process is in fact a cheap one.
If the drugs would have been made on Mars… yes, the high price would be justified…… (
illy:' /> illy:' /> perhaps Big Pharma is using alien technology illy:' /> illy:' /> )RHF
LondonGirl wrote:Thank-you RHF
When are you having that glass of champers? (or have you already had it?)
Can we synchronize? 
Hi LG,
well, I will not say “no” to the second glass
That’s a perfect start for the week-end and for a new life !I wish you to have a lot of fun,
RHF
HI LG,
CONGRATULATIONS !!!!
It worth all the efforts and the waiting ! I am so happy for you!!
Cheers,
RHF
beaches wrote:isaing4 wrote:For Viekira pak Romanian NHS has achieved a very good price 18,000 euros,
That is a very good price. Australian Government is paying for people to get treated. Health minister was speaking very proudly of the great deal she got. Just under AUD70,000 which is a bit over USD50,000
Some people might think this is a good deal. I do not, even though I have been a beneficiary of the situation.[/quote]
The lack of price transparency on a market is quite irritating, especially when talking about people’s health.
The amount of 18000 Euro indicated by Isaing is mentioned on a couple of websites, some of them are well known websites for news, while on the NHS website from Romania the price being communicated as valid from June 2016 is different (if I made the math correctly, 12 weeks of treatment would still cost ~48 000 Euro). Honestly, I hope my math is wrong and that indeed the price in RO is 18000…For sure, the gap 18 000 – 48 000 Euro is huge, nevertheless even 18000 Euro is unrealistic for the majority of Romanian citizens.
In any case, another news is that only F3 and F4 will be treated, so those with F0-F1-F2 still need to wait or buy generics (
).
I wonder what is now France doing?Cheers,
RHF
”Lynne-Francis-facebook” wrote:So very happy and excited for you…..I hope you enjoyed your glass of champagne
the best ever Thank you very much,
RHF
It might be all are right
. It depends from the perspective we look at these words. (Wikipedia says) Moral courage is the ability to act rightly in the face of popular opposition, shame, scandal, discouragement, or personal loss.
(Wikipedia says) A hero …. is a person or main character of a literary work who, in the face of danger, combats adversity through impressive feats of ingenuity, bravery or strength, often sacrificing his or her own personal concerns for some greater good.To me, whenever I think at those who helped me get treated with generics (Dr. F,, Greg, my RO doctor, you guys from here who took the risk to freely talk about hep C and generic drugs) I see them as heroes, my heroes. When I think at me however, I do not see myself with this “hero” label, rather I see myself as a person who (finally) had some courage and decided to took life into own hands and get treated despite the opposition or my perceived of opposition related generic drugs.
Trying to think from a doctor’s perspective ( I am not, but for this exercise I will pretend I am
), seeing a patient getting through the IFN+RIB treatment or deciding to take control on the own life and be a signal for the others patients, might be seen also as an heroic behavior. No matter if we regard this as heroism or courage, IT DOES SAVE LIVES AND BRINGS THE SO MUCH NEEDED HEALTH !
Hats off !!!!
