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Hello Everybody,
I am trying to keep this post as short as possible… (as I am tempted to write a much longer message).
Before the treatment, I was having the impression that people around me barely know about HCV and that I was one of the few unfortunates to have had HCV. So whenever I was with my friends, I preferred to talk as few as possible about HCV. Also my friends were not asking me much about it. Why? Perhaps they knew already that it is a hard to treat disease and …. they felt probably like me – helpless about what can be done to fix Hep C.
I am aware that also on work, many people prefer to keep it extremely private in order to not jeopardize their careers. Some estimates in Romania indicate that 1 out 10 persons has HBV or HCV, yet there aren’t much talkings about it. It is crazy to think that if one is working in a company with let’s say 100 employees, 10 of them have either HBV or HCV, but they do not know nor share (much) information.I am pretty sure it is the effect of the stigma. Couple of words about the stigma can be found here – have a look at 2min30sec:
Did something changed after having received the results of UNDETECTED (during and at EOT)? Well, yes, a lot.
For people around me, but for me as well, knowing this result, opened the door of communication. I was so much surprised to see, that almost everybody knows at least one case of a friend / relative / colleague having HCV and hearing that I got treated and reached the UND during treatment was seen (and it is of course) as a miracle, so they do ask me a lot and we talk about the HCV generics.What I observed is that once the UND result is obtained, people DO talk much easier with me and also for me it is much easier to talk with them.
And even further, I feel I have more trust / confidence that if someday the news about having had HCV will go outside my circle of friends, the possible consequences on my career will not be so high – however I still see risks if such an information will become known.
So … I feel that the HCV stigma related to my person is not entirely gone, rather it is getting reduced.To conclude: UNDETECTED is an important milestone in lowering the HCV stigma with regard to my own person.
P.S. you may also imagine the “nice words” being spoken about gilead, patent rights, the legal framework, some doctors, etc …. I doubt I can reproduce it here without risking my user account to be banned
Cheers,
RHF
That lovely lady at start of the film, is an internet friend and has bravely been in in the first few films & TV media in England – I also helped her run a petition to UK Gov / Health authority for access to meds on NHS England and is lovely person. Happy to say, she’s on treatment now and currently UND
Thanks RHF, a great post on what is an important subject that I suspect will become more so as greater numbers of people receive treatment and attain SVR. I have said on a number of occasions that the best way to help end the worldwide HCV pandemic is to break down the stigma associated with the disease. Currently the general public has very little idea about the disease, the number of people impacted or the injustices perpetrated by big pharma greed.
In my case I made a decision last year when I started treatment that I would disclose my status at my own discretion as part of the education process (and to some extent because I decided it was easier than not doing so). As a result I have told all my friends and many of my associates and have given most my permission to pass on that knowledge at their discretion while explaining that I trust them to do the right thing. And like you I find many are curious and wish to know more about a disease they often think is incurable. At the same time I am not yet comfortable disclosing on social media where I have no control of how it is spread or construed. So on here and other sites my public face is Gaj although those who have had private conversations with me will know that I am happy to use my real name in those situations.
Also like yourself, something that has come up several times while disclosing to others is that they have then said “Oh, ‘mutual friend’ has Hep C too”. My response has been to ask if the friend has given them permission to disclose that information while at the same time pointing out that my status doesn’t constitute that permission, but I then tell them they can inform our friend of my status and to ask him/her to contact me if he/she is interested in learning more about seeking treatment.
What I’m trying to say here is that while I fully support and encourage disclosing of HCV status to help spread the message to others, it must be our own choice as some of us are better prepared/equipped than others to fend off any potential stigma that may ensue for ourselves and possibly our loved ones. We need to make the decision ourselves and ensure it only applies to ourselves unless we have been given permission by the other person.
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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