TOPIC: HCV virus can now be defeated, yet how do we defeat HCV stigma?

Hi Everybody,

2016 was a great year (at least to me) to find out that generic HCV drugs can effectively treat HCV and can be purchased legally and at affordable prices. Since then many have changed for me in good, except one thing that is still in the category of "unsolved problems": the HCV stigma.
Therefore I open this thread with the hope that debating about the subject of HCV stigma will generate some good ideas.

As I mentioned in other threads as well, before that I got treated with generics, I was not talking too much about my case with other people (only in a close circle) and I had to document myself quite a lot before taking the decision to get treated with generics in order to overcome many obstacles that I had at that time:
- fear that the medication might be fake or not having the right substances (now it is solved, it was not fake and I am cured)
- fear that I might be scammed (now it is solved, thanks to FixHepC and Greg, I was not scammed)
- fear that my doctor will "throw me out from the office" if I will start to discuss with him about HCV generics (now it is solved, my doctor was listening very careful my case and analyzed properly the information I got from dr. Freeman about generics and the REDEMPTION trials)
- fear that I might be doing something illegally if I would purchase the medication from India (now it is solved as I learned that this is legally in my country)
- fear that I will not be able to handle/manage the fears those around me had about the generic HCV medication (at one point I stopped thinking on what the others might be thinking as their fears were no longer helping me).
And the list can continue...

I thought that after I will get cured, the HCV stigma I perceive will vanish, unfortunately it is not like this. The stigma still exists, yet it has a different shape:

- those very close to me who knows I am cured, think "WOW, it is great that you did it", but we do not talk too much about it.
- however those who hear about my case and are not close to me, are reluctant and express their doubts which are similar with the fears that I mentioned above. At this point I am not clear whether they have doubts related to my person or related to the medication, nevertheless it is not pleasant to deal with it.

Just to add another bit of information: I am living in a former communist country, where the "old system" induced among many people the "lack of trust" in other people. So whenever someone has a good news to communicate , the person will be judged/analyzed a lot .... except for the news which sometimes is simply forgotten (hey guys, do not judge me, judge whether HCV generic really works )
In the forums / mass media from my country there exist very few discussions about the HCV treatment option provided by the generic drugs and quite often, in the few places where there are some discussions about it, one can see also the comments of some people who express their doubts and blame the generics or the people who got treated with generics, accusing them of trying to trick the sick people .... In short words, even though the HCV virus can now be defeated, the HCV stigma is not yet defeated. Not even (some of the) doctors are willing to discuss openly about the generic drugs ...

Because of these aspects, my personal choice is to not disclose my identity, even though I am aware that disclosing my identity might help some people. At the same time ... I am pretty sure that doing this might harm me...

If someone of you have any ideas or thoughts about the topic of HCV stigma, please drop some words in this thread .

Cheers,
RHF

Good thread RohcvF
Being in medical experiences category is the right place for it. As testing for antibodies is getting easier and easier, one idea I had for here to tackle stigma is to get mass, public, publicised screenings of healthcare workers, staff testing booths, weeks, whatever. The stigma is worst there, maybe because we are vulnerable and exposed when having health treatments with HCV.
I think there should be education for healthcare workers, then screening, so they can break down stigma themselves, and lead by example.
Unfortunately, we no longer have any NGO here in NZ as the NZ Hep Foundation has announced it now is only for Hep B., and it is the sort of thing they should look at.

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

Thank you and well written.

I must say it is disappointing as the stigma of having HCV will never cease until the education of the cure is recognized as a brilliant moment in the medical world. Most break throughs are treatments to prolong life, this was/is a cure!
I and most everybody here whom has treated went through this secret, as the victory of beating this disease was over shadowed by the stigma of having it. Most of us could tell no one but our closest family members and even our friends would look at us as damaged goods even though they were on the journey with us in the first place but never caught it. The victory party is lonely.
But we must keep trying to get the word out that this was and is a miraculous victory not only for us and impoverished nations but to the safety of the world we live in,.
Thank Dr James Freeman for bucking the system and seeing the world as it should be and not following the sheep that would jump off the cliff just to follow not even knowing why they are jumping.
Soldier on people.

The stigma will live on forever! When I was younger, I worked with 2 people. One had Aids, and one had HepC. The person with Aids was open about it because he was dying, and appeared to be dying. The person who had HepC was open about it, as he was treating with Interferon. I think he told people because he learned of the infection while at work, and just opened up from the shock.

The person with HepC was treated much worse. No one wanted to go near him. The fact was and still is, people don't understand how difficult it is to catch HepC. So they avoided him as if he had plague. He was eventually fired. He was fired because they made up an excuse to get rid of him, because people were afraid to catch HepC.

The other stigma is that Aids is often transmitted via sex. HepC is mostly transferred by dirty needles. So if you say you have HepC, you are seen as a junkie.

I keep my mouth shut. I will never expose my true identity. No one besides my Brother knows I was ever infected.

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 all,

and thanks for this interesting thread.

The stories took me back over the many feelings I experienced on the way through with this disease and helped me make sense of many of them.

I tend to think about stigma in a more primitive context - like prejudice. I see the link of people needing to be able to quickly identify what is about to harm them rather then waste time thinking twice. Real survival in the jungle stuff. To me this leads to lazy thinking - he looks a bit seedy and will probably rob me if I get too close. Then we stereotype all people who seem to have the characteristics of this person. What we have now is a stereotype and a slow moving target for prejudice.

All too easy. HCV equals some form of involvement with drugs; and if its not affecting you directly, why would you devote too much time trying to find out otherwise. I am not being cynical about this, I think that this is just the way it happens.

The real issue with HCV is and always was curing it. I do think that now it is curable people's attitudes will change. People will see HCV for what it is, another disease that just needed a cure and not a judgement about how you came by it.

Again thanks to Dr Freeman and Greg who saw a curable disease without the silly judgements, and the people who held this forum together over the years to get the cure out there.

Yours


Jeff

Hi Jeff,

Let's not forget also about the post-SVR12 stigma. It sounds strange, but this happens too.

Eg.1: Last year, after I got treated, I had to make a visit to a doctor which was practicing general medicine (I hope this is the right English translation). When hearing that I was treated with generics the doctor told me "you think you are cured, but you are not. Nobody knows if it really works". At that point I tried to finish the consultation asap.

Eg2: while I was still under treatment, a person who knew my family was very excited about me getting treated with generics as she was also having HCV and asked to be updated as she wanted too to get treated. After I had my first UNDETECTED, this person was informed about the result and from that moment further she started to avoid my family. Her fears were related to the fact that perhaps I would push her to get treated (which she would have had to pay with her own money) and/or she was perceiving me as being a kind of drug dealer doing forbidden things..... I know I am a "generic rebel", but this .... . .... I never tried to get back to her and her present status is "untreated".

So even though I reached the SVR result, people still find reasons to have fears and I can feel their isolation tendency. If HCV treatment would be as easy to get like one would take antibiotics, maybe there would not be this high level of stigma.

Cheers,
RHF

Hi RHF,

I guess I was (still am) lucky living in Australia.

Treatment with generics was easy to get the first time round through Dr Freeman. The cost was significant but well affordable.

Later, second time round, the DAA's were funded by our PBS where we make, at least for anyone on a reasonable wage, a small payment.

Again this situation of having the 'real stuff' funded was I think something that came out of an obtainable generic alternative making Gilead think twice about what they charged(?) and our government to see sense and list the DAA's on our PBS and fund it anyway. I think by that time the rate generics were being prescribed may have convinced our politicians that HCV can be eradicated. Like we did with TB when I was a kid.

Funnily, when I was retreated my specialist re-interated the same thing about the generics being second rate - hence the 1st treatment failure. Don't you just love to hear that! Our PBS system allows doctors to say most medicines can by substituted with generics anyway. Can't think why HepC medicines should be any different, but then again I am just a pleb.

I was prescribed much the same thing again (with Riba added) with the belief that where generics failed, the proper pills would work.

It did work second time around................. But also because of other reasons I will not mention here. I will say though I am not entirely a dumb pleb.

My experience through all this has been Dr Freeman was on the button through both my treatments and to my mind generics work just as well as the 'real stuff'.

I am also sure that having the first treatment gave my liver a much needed break and I would have had to wait nearly a year to start on the PBS funded stuff otherwise.

Stigma wise, I think I felt that many years ago and a lot of it wore off over time. I just hope that people reading this forum put aside the social aspects of this illness (and I and probably everyone here could write a small book about that) and just get treated.

And for those about that think having a negative view about other people because they have some illness is okay, then getting a rude shock can be as easy as opening a letter some weeks after trying to donate blood and finding out you have Hep C, D, E, F, G, .........down to Z or something else lurking round and not yet discovered.

Having said all this, I still get it about stigma as you can see with me travelling under the name of Sabrecat. Hope this perceived need will change someday soon.

Yours


Jeff

“Care about what other people think and you will always be their prisoner.”—Lao Tzu

Thanks Lilyfield, that is excellent advice and how I try to think and lead my life too.

However it can become difficult ^for some^ to abide by this creed when others carry their thoughts through into actions and behaviour towards us and/or our loved ones. That Fear of those actions and behaviours is largely what drives the stigma many with chronic HCV feel. It is fuelled by ignorance and lack of understanding and creates a situation where most remain silent which allows those in power to conveniently ignore us. And while what Lao Tzu states can be a useful tool for our own inner peace as individuals, of itself it doesn't assist is of some help in breaking down the wall of silence surrounding this disease. That will only occur through spreading greater awareness and knowledge and dispelling the myths (mists?) surrounding HCV.

Because of this I am mostly open about my own situation (while understanding that others may be more reticent) but I look and work towards the day that I can discuss HCV with a stranger without wondering what response I am going to get.

Hi Gaj,

I am sorry, "silence" was not my intent. Perhaps it is the Vermont state of mind, but I don't give a rat's a** what others think, as long as I am right with myself and those close to me. There is an old saying, "I come from Vermont and do what I want." I do speak out and am carrying the message. I also believe that information is on a need to know basis.

Again, I thank you for all your sage advice. I sought out your posts from the inception of my journey as a "fixhepcer". You truly are a rock - one of the things I miss most about Vermont.

Congrats again on your svr12!

Hi Lilyfield,

My apologies, in no way did I take either your quoted source or you to be advocating silence, as I said it is excellent advice! My further comments including those about the wall of silence were not regarding your post but rather a clumsy attempt to express my thoughts on stigma and why many are reluctant to disclose enough information for others to even have an opinion. I've made a couple of amendments to hopefully clarify.

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