Hello Everybody,

a year has passed since I opened this thread and this is a good opportunity to see what happened with the wishes:

1) I wish to see a politician saying publicly that as long as HCV generic drugs work, a national healthcare program based on it should be implemented;
This wish is unfulfilled. The politicians from my country have had other priorities.

2) I wish to see a “generic” version of Dr. Freeman in my country;
This wish is unfulfilled. That’s sad…

3) I wish to see that more and more people become aware that the HCV patients may avoid the suffering by taking the interferon-free treatment (and quite fast if they choose the generics path )
This wish is partially fulfilled. There have been some advertisements about the HCV interferon-free treatment and people are being advised to get screened.
BUT
– the problem “how to access the treatment”, especially for those having F0 – F2 fibrosis, continue to persist.
– the solution provided by HCV generic medication is not yet being addressed (I could not find references in the online media that someone is considering the HCV generic drugs).

4) I wish to see that HCV stigma is vanishing
This wish is unfulfilled.

5) I wish to see that HCV is gone…. forever and from everywhere!
This wish is unfulfilled.

Looking at these wishes and how much has been done in the last year by the healthcare system, I can only conclude that extremely small progress has been made in my country. And if I would think on how many new cases of HCV appeared in the last year, I fear in fact there is regress. I guess better outcomes, but this is not that visible, have been obtained by those who decided to handle their HCV situation on their own and take the path of generics.

In case you are seeking a cure for your HCV, these lines should motivate you to not give up and understand that you need to be more active in order to get cured. Do not stay passive and let the years pass, hoping that someone will solve your problem. The only one who can do something is YOU and it starts with YOU.

I look forward to see what the next year will bring.

Merry Christmas to anyone!

Cheers,
RHF

I am not sure if the following thoughts apply also to other countries, but when I look at what the doctors from my country say about the hep C, it makes me believe that a major cause for the HCV stigma are actually the doctors (not all, as there are also some open minded doctors which act in the real sense of what a doctor should say and do) acting without profesionalism.
Of course, there are other major causes for HCV stigma, not only such doctors.

To explain these thoughts, I will go back in the past history of humanity when people were killing other people, not because of a proven guilt, rather because of a conflict of values or ideas. In those times, even though the crowd was sustaining the “kill”, behind it it was actually a leader (community leader, spiritual leader, etc) who was declaring the person as “guilty” and the consequence was the execution.

If I would now think on the HCV situation, normal people represent in fact a crowd in which only few are educated about HCV and many are not. So for this crowd, the doctors are in fact the “spiritual leaders” and they carry a huge responsibility about how they act and what they say. If they act with profesionalism, they have the power to reduce the stigma, nevertheless this requires a lot of effort and time in order to change people’s negative thoughts. But….if they act differently, they do nothing else but to keeep people traped in the negative thoughts (and even augment their fears) and so, by acting without profesionalism, they do contribute to the stigma. And people traped in negative thoughts may attract others as well to fall in the same trap.
With regard to generic medication for HCV, the doctors have 2 options when communicating with patients:
– either they say “there are high risks to order generic medication from India/Egypt…” and keep so people traped in the fears they have.
– either they say “there are effective generic medication that can be taken from India/ Egypt …. you only need to find how to safely get it” which would allow people to get rid of some of their fears.

I would say that today people can sense very well if they have in front of them a good doctor: there is confidence, the discussion is open, focused on how to defeat the disease, how to ease the pain, how to access the treatment safely and there is no place to feel the stigma.

I end this by saying that I do not wish to blame the doctors, rather to pinpoint the fact that they have a huge power to reduce/eliminate the stigma and I believe each doctor should think on this responsibility they have. With one good word they may save someone’s life, but with one wrongly used word they could actually kill dozens by stoping people in getting treated, even though they might have an option to get treated (like personal importation).

They should use the personal importation of generic HCV medication as an example of what can be done for the patients to get cured and they should stop the current (and bad I would say) practice to present the generics as a kind of risky activity.

Cheers,
RHF

Hazel, GF, Sven: Thank you for sharing these thoughts.
Stigma is like a kind of prison putting many barriers in place.

The barriers raised by this HCV stigma that I saw (and faced) are:
1. Poor education – For sure the education is a key factor. Unfortunately it takes a lot of time & effort to educate so many people on this planet about HCV and convince them to NOT judge people with HCV ….
2. Fear to speak/ get in contact with others – Having a place to speak about HCV (with public or hidden identity) is a great tool to manage the own HCV situation and find solutions by being in interaction with others. Yet not many people are using such a tool….
3. Almost inexistent peer support for HCV – Among time I’ve heard about a lot of support groups for HIV, but not so much about HCV support groups. Before joining FixHepC, I was not having with whom to talk about my situation.
4. Low advocacy for HCV – I am getting really annoyed with all the marketing that is being currently made “Get tested, talk to your doctor and get treated” while the access to treatment is extremely limited and/or the old interferon based treatments are still push forward. In my country there exist an official website used for a national awareness campaign (stop hepatitis) where the treatment options for HCV mentions interferon, ribavirin, boceprevir, telaprevir, simeprevir and sofosbuvir with or without interferon + ribavirin….
5. Legislative & political barriers – there are so many things to say here…. But I will keep it short by saying that unfortunately, when talking about healthcare, many political people miss the target…. And they do this so bravely….

If I would now relate the barriers from above to my case, I had to remove all these barriers in order to get treated and I could not have done it without getting support (family & close friends, doctors, FixHepC, Greg):
– Advocacy for HCV – it was a friend of mine who pushed me to get treated. Not having had this friend, I would have been waiting even today to get the treatment…
– Education – Once I heard about DAAs (harvoni, viekiera, etc.) I started to search for more information. It was not so easy, especially that nobody around me knew about it, yet I simply had a little bit of faith that the cure exist and that I might be able to get it (the generic one was the only affordable option for me).
– Peer support – FixHepC and Greg provided me solid support which was vital to me as I had many doubts & fears.
– Fear to speak / get in contact with others – well, yes, this too. The HCV stigma isolated me from others and made me reluctant to share with others information about me. Yet, once I started to engage with others and debate about HCV, I find it more easy and provided me the opportunity to get more knowledge which moved me from a passive to an active stage to get treated.
– Legislative & political barriers – If it would not have been Dr. Freeman and Greg to make the information about the personal importation and DAAs available, I am pretty sure I would not have been cured now.
And I would dare to say that many of us from here who got cured or are getting treated with generics had to remove the same or similar barriers.

Cheers,
RHF

Hi Hazel,

You pointed very well these cases…. it makes me think that HCV stigma is in fact an entire huge iceberg (a lot of complexity and many aspects hidden to normal view).

As it happens with every iceberg, it will end up in getting melted when entering into warmer waters.

Hm…. what can move the HCV stigma iceberg to warmer waters??? That’s quite a challenging question.

Cheers,
RHF

Hello Everybody,

I guess it is true when we say the time goes very fast. Last year about the same time I was reaching the EOT and today I am very happy that I reached SVR52 . It was so wonderful to get another paper on which it was written “UNDETECTED”.
The other blood test results are in normal range, yet I still have to fight a little bit with my cholesterol level which is slightly elevated.

Many thanks to all of you for the great support you are providing to those seeking help to get rid of HCV and also for the information share.

Thank you FixHepC and thank you Dr. Freeman!

Cheers,
RHF