Hepatitis Forums
Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: Marilyn666 on March 02, 2015, 01:56:50 am
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Hey, I always read this forum though i don't always post but i feel like i need to today> I am six months post treatment (haven's had the 6 month test but am very optimistic that it will be clear because the 3 month test was) I wanna say some things about the stigma attached to this disease.
Does it really matter how I contracted this disease??? So will you judge me by how I contracted the disease. I have been very honest about the fact that i had hep c and the first question is how did i get it??? WHAT DOES IT FUCKEN MATTER HOW I GOT IT???? Even if i was a junkie living on the street i deserve a second chance. Does the general public realize that maybe because i am a junkie i can't find the means or mindset to try to treat this disease.
My wish is for people to be kinder and then maybe more people would try to battle this if people didn't treat them like they had the plague. I will never forget my 48 week struggle that i went through. I thought maybe i didn't deserve to be cured and I never thought it would work because in my mind i didn't deserve to be cured. The only reason i tried was because my husband, children and grandchildren really wanted me to at least try. i am so happy that family pressure worked out.
Please know you are worth beating this!!! People that stigmatize us are ignorant to the disease in general. They don't understand and think we are all junkies, i say what if we are, are we not people who deserve a chance at a good life. Maybe we are junkies because we know we have hep c and believe there is no hope. There is hope, there is life it u choose it. Believe when i say i know how it feels to be hopeless, but now i know there is hope.
Positive energy sent to each one of you,
Marilyn
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Great post!
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Marilyn, you are so right. People should be kinder and it doesn't really matter how any of us got HCV, we all deserve respect and appropriate treatment.
Yes, most people are uneducated about Hep C, and many other diseases, and some do judge like they are afraid it will leap off of us and into them. If I choose to tell someone that I have or had HCV (now UND) I also try to make sure they are aware of how it's transmitted - just a few basic facts - most never even heard of it except for the recent TV ads and appreciate some basic knowledge. You can see relief on their faces as they realize "it's not what they thought".
Some will always be fearful and judgmental, but that's their mindset - WE do not have to accept their limitations. We deserve respect, treatment and to be helped to find a path to those things if we need it.
Ignorance is not bliss - fear of the unknown can be debilitating - and knowledge leads people in a more positive path. My thoughts today as I reflected on this topic...
As Ruthie said, great post Marilyn! Sending positive healing energy and a hug ...Islandgirl 8)
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Hi Marilyn,
The stigma associated with HCV was my greatest battle and I made the topic taboo (just didn't talk about it).
We all come from different walks of life and it does not matter how we contracted HCV.
I carried the burden for many years. I slayed the dragon in July 2014 (SVR12) and again in October 2014 (SVR24).
I can tell you this. It is so great to say: I 'had' Hep-C - I don't 'have' Hep-C.
Best wishes, MIke
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People often dont know what to say and then plunge ahead and say something not so bright or not so helpful. It is a good lesson for me becausea if there is one thing that having a chronic communical disease has taught me, is to give others a break. I have said plenty of stupid things in my life and unfortunately will probably do so again.
When is all my wisdom going to arrive? the years certainly click by either way.
Also there is the fear factor. Others want to know how you 'caught' hep C because they want the reassurance that it wont happen to them. This is similar with cancer diagnosis. How many times has a woman shared that she has breast cancer to hear "so is it in your family?" "did you smoke?" "did you do skip your regular mammograms" Insensitive at the least.
This is also why many of us (me included) do not share this information with anyone. Need to know basis only. There is too much misinformation out there about HCV and I don't have the time or energy to educate everyone.
I agree that it is not important how we contracted the disease, all by some type of blood exposure and that is really all anyone needs to know. None of us are any better than anyone else by virtue of our source of exposure.
I agree with Mike that the stigma that goes along with this disease causes as serious damage as the physical changes.
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Great post Marilyn! Nobody deserves to have Hep C, no matter how they caught it. Not "junkies," not anybody. I have always been pretty vocal about having Hep C. Maybe I missed it, but I don't ever recall being shunned or anything like that.
Interesting story, I was in a business meeting last week and an old friend asked how I was doing. I said "great" and gave him a quick update about being on Harvoni. There was a young lady in the room who looked right at me and said, "I achieved an SVR in October." She just blurted it out, but I don't think she would have if I hadn't brought it up. Four people in the room, and two of us battling Hep C. Point is, if more people were more forthcoming, then the stigma would go away.
Bob
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I just wrote practically the same thing in the OFF TOPIC forum.
Great minds.
I don't care how you got HCV.
Good luck to you.
Namaste
TPROPANE
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Good post, Marilyn. Good comments. One of my closest friends got in to a whole thing of, "Well, I just wonder how you got it." I was shocked. Asked her, "Why does that matter to you?" That shut her up. I think she was being herself (When she gets a cold she tries to determine "who gave it" to her) or looking for a story. Recently another friend asked me the same question in a letter. Sometimes I try to educate people and other times I just avoid answering. If they are really interested they can google it. The other thing that bugs me is unsolicited advice about how to treat it from people who don't have it and don't even know what it is. New-Agers. All manner of snake oil being offered (for a price).
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Hi All! Stigma!!!!! Ha...
The way I look at it is for the one or two who rejected me because of HCV it was their lose and my gain because I don't want shallow people around me. They are not up to my level thank you very much. And that is all I got to say on that.... Skycatcher :)
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Marilyn666'. Hi how are you.?
I noticed you have 666 on your name, I'm wondering what 666 has to do with your name? Is that a symbol for something you embrace? I thought 666 is mark of the beast, is that what you think also?
I'm not worried about stigmas , I'm more concerned with getting well, what difference does iT make, who cares if you got it by needles, infusions or tattoos?
Everybody I met with hepc or hiv only wants to be well, I hope you get well and I hope you quit being concerned with stigmas.
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I noticed you have 666 on your name, I'm wondering what 666 has to do with your name? Is that a symbol for something you embrace? I thought 666 is mark of the beast, is that what you think also?
Saw a bumper sticker the other day. It said, "667, neighbor of the beast." Too funny!
Bob
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Bob, that's a great bumper sticker! Thanks for the laugh. Laughter is the best medicine, right?
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Well of 36 years of having hep C I have only told my mother and one friend (many years ago) and my ex boyfriend of 14 years and now my current boyfriend of 7 years...I have one son who I never told until he was 23 as he lost his father when he was 6 years old and I didnt want him to worry about me dying as well. Now to current day, I am starting my Harvoni on Monday march 16th and I am so excited and everything I will be doing the next 8 weeks will be revolved around taking excellent care of myself so as to "assist ' the Harvoni in doing its job!...AND I cant tell anybody about it!! I have many friends and many great coworkers but have no trust to tell anybody that I have Hep c so that is one of the main reasons that I have joined this forum as to just 'Be' and share with others in the same boat that I wont have to worry about judging me!! Maybe once I am "cured" (positive thinking) I will work on my trust issues and share my experience. I should also mention that I am a nurse and I have never heard comments from others regarding Hep C that would make me want to say " Oh guess what? I have hep C!} It is dissapointing that there is such a stigma and people just want to know HOW you got it...Who cares!! People are people we are all the same and Nobody deserves this!! I love coming to this forum and reading other peoples posts and experiences!! Thank you all for sharing!! Good to not feel so alone in this battle! Best wishes to you all!!
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Hi pumpkin50,
I was a lot like you: I've only told a handful of people about my status due to the stigma associated with HCV.
This is why this forum was so helpful to me. I could freely discuss issues and feelings with folks with a similar experience and not worry about being judged.
Having been cured it is so wonderful to say: I had HCV - I don't have HCV."
Best wishes on slaying this dragon and a renewed, stigma-free life!
Mike
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Hi Pumpkin50!
You are right to be cautious about who you choose to share this deeply personal thing with. I have found that the few people who I have shared this with for the most part are still great friends today after many years. The one or two who freaked out would have never been good friends anyway. If it wasn't HCV it would have been something else either real or created.
~ Skycatcher
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This is my 2nd post on this forum. Great thread. I always kept my mouth shut at work, about my HepC, only told one other person, who, as it happened, also had HepC. He succumbed to this disease about 2 months ago, sadly, and still I told none of my co-workers. Always felt like it was my dirty little secret. Well about a month ago, while talking to another co-worker, I found out he also has HepC, and he made no bones about it. At that point I said I also have HepC. Now, my attitude is the info is out there, and that is all I got to say about it. And regarding the OP's statement about everyone deserving a 2nd chance, I will just say I am a believer in that statement.
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This is my first post on this forum. A lot to read but this topic just really jumped out at me. I was diagnosed in 1995. And even before I had the result, just asking for the test was met with a fisheye from my doctor. "Why would you want to test for that?"
I'd been down in San Francisco taking care of two friends who were undergoing this horrific new treatment (interferon) for some rare kind of hepatitis I'd never heard of. They were both sick as dogs from the treatment and needed help for a while.
When you see that kind of experience, up-close and personal for three months, then end up in your own doctor's office for an annual check-up where bloodwork is already being done, why wouldn't you ask? I remember her saying rather oddly, "what were you doing down there?" Ummmm... helping my friends out?
Anyway, her reaction to my request was weird, but it didn't really prey on my mind. I didn't have any reason to think I had it. So much so that I forgot about it. When she called me at home, I was shocked to hear her voice and had no clue as to why she was calling. "I'm sorry to tell you, you tested positive." "For what?" "Hepatitis C".
It's a 20 year story, but the stigma has been there from the start and has never let up. Went to see a GI doc at the urging of my family doctor about 8 years ago. I didn't really want to, as I knew he'd just want a biopsy to recommend a treatment I wasn't going to do. I'm genotype 1a, and knew I didn't have the stamina to endure a course of interferon especially with it's dismissal efficacy in treating Hep C 1a. I've always thought (until Solvaldi and Harvoni) that my best shot was staying as healthy as humanly possible via diet and exercise until a reasonable treatment was available.
Anyway, I mentioned to said GI doc that I was weary of the stigma attached to Hep C. He told me that he certainly didn't attach a stigma to the condition. Here's his words verbatim 'cause they really stuck in my mind: "I don't attach any stigma to Hepatitis C!!! My brother has it. And he's a doctor - of course, he got it from a needle stick."
Of course. :( Of course he did. Nice that he felt the need to qualify he's brother's condition immediately. His brother was one of the "decent" people who had it.
My intake evaluation is on May 11th with a liver specialist in Seattle who is successful in prescribing Harvoni. New labs and scans before that. I'm scared, exhausted and hope I haven't waited too long.
I live well north of Seattle. The GI doc that my family doctor works with up here told her that the price of the new meds is too high, insurance won't pay and it's best to wait until the price comes down. She has other patients in her family practice that have Hep C and NONE of them are on Solvaldi or Harvoni. It's still interferon/ribavarin or nothing with this guy. I think he may just not know his way around the paperwork. ALL insurances won't pay? That can't right.
Too long a first post - sorry. Just wish my Seattle doc appt. was tomorrow. :(
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Good post, Else. Wishing you the best with new doctor.
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Else, sounds like you have a good idea to go to another doctor. There's a lot of people on Harvoni who have many different insurances.
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Interferon and liver biopsies are obsolete therapies. It should be criminal to prescribe this in 2015.
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Hey Motor.
I agree that interferon is obsolete and I need you to educate me on why liver biopsies are too.
Great post everyone- a really safe place to talk about things that I have kept in my heart for many years.
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Hi Else
I live in the South Sound and I see the head of the liver center at Swedish Medical Center they are currently over run with patients treating hep C. I am on Harvoni for 24 weeks with ribavirin because of my treatment history and cirrhosis. I didn't see your genotype but the current recommended treatment for GT 1 is Harvoni for 8 or 12 weeks and Sovaldi Ribavirin for I think either 12 or 24 weeks for GT 2 and others.
No one is treating with interferon and ribavirin in the US only in countries where these new meds have not yet been approved.
Do you know your genotype and if your liver has any damage? What kind of insurance do you have? There is also help getting the meds from the drug manufactures if you have been turned down by your insurance twice if you qualify. If you provide some more info we can help you know more about how to get your meds
Good luck seeing your new good and informed doctor
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Thank you for the well wishes.
Lynn, it sounds like I'll be seeing your doctor - small world! I am genotype 1a. Diagnosed in 1995, possible infection 1980. My last labs (Jan 14) were good and my viral load had dropped from 3.6ml to 1.8ml since my previous annual. Also, an ultrasound (fairly sure it was not a fibroscan) showed no problems. My GP has been monitoring my Hep C but none too happy that I would not see her GI referral again. I'm not sure I or my GP knows with any certainty the extent of liver damage or scarring.
I am treatment-naive I think they call it? I've never done interferon. I just knew that I'd be so unlikely to complete treatment, and the chance of a cure for my genotype was so grim that I elected to wait for a better alternative and focus on staying healthy. Never thought the wait would be this long! But good news at last.
Swedish already has my insurance info (Premera BC) for my May 11th appointment so I know my new liver specialist is in-network. They should pay 80% until our medical deductible is reached (immediately with Harvoni of course) then pay at 100%. But with the below disclaimer, I'm still unsure.
"Coverage for "nonpreferred" drugs requires an exception for medical necessity. Your doctor needs to request the exception with an explanation of why the drug is required for your condition instead of a preferred drug. If the exception is approved, Tier 2 cost share will be charged."
What drug isn't prescribed for medical necessity, for pete's sake? Insurance companies do love their 'grey areas'. Have no idea what the fibroscan will show. But I'm sure no longer asymptomatic. The fatigue and brain fog is getting overwhelming. May 11th seems a long way away.
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I also have BCBS my pharmacy is Express Scripts and the Specialty Pharmacy for Express Scritpts that provides the expensive meds like Harvoni is Accredo. They have a prior authorization protocol for these meds Express Scripts back in December made a deal with Abbvie pharmacuticles to make their med Viekira Pak the preferred tx for Hep c and Harvoni is available if you meet certain requirements.
I have a email address if you end up needing it for express scripts that gets around the red tape sometimes.
Yes a person who has never treated before is considered treatment naive.
I will just let you know getting these meds has been easy for some but frustrating for many.
As far as cost my copay for Harvoni is $20 but then I have a copay coupon from Giliead Pharmacuticles on the my support path web site that brings the cost down to $5 a refill. I expect Abbie vie may have something similar.
Just remember if you do not have much liver damage it makes it more difficult to get the meds even folks like me with documented cirrhosis get denied initially.
Also they have a fibroscan at the Liver clinic at Swedish. There are several doctors there I finish my 24 weeks of treatment on May 4 and will be seeing my doctor on June 12th for my annual visit/ post treatment appointment.
Good luck let me know if I can help you out more as we seem to have same medical insurance mine is through my employer the airplane builders you probably know the name.
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Else, I think it's in your favor that you're treatment naive. Eating for my liver and getting an exercise program going eradicated my mental fog. Hold out for the Harvoni cure, no to interferon.
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Hi motor
Because she is tx naive with low viral load and likely no damage express scripts may only approve Viekira Pak for her not sure where they are on that since December when they made Abbvie the preferred product. Viekira Pak has almost the same efficacy just more pills plus she will have to take Ribaviron as she is 1a. She can still be cured with Viekira Pak and it also does not use interferon.
If her insurance denies Harvoni in favor of Viekira she still can cure her hep c.
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Sad, seems Harvoni is the cure of choice. So many changes in the HepC war going on now, that anyone with a little time on their side will be rewarded, better cures, better prices.
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@Sapphire, it's my understanding that the combination Fibroscan test coupled with the Fibrosure bloodwork coupled with CBC bloodwork, liver panel, etc. gives a more accurate measurement of your overall liver condition.
The biopsy is an invasive, painful, tissue damaging, infection risk procedure. Plus, all you have is an accurate reading of tissue drawn with syringe
I read advice to refuse a liver biopsy. This came up in my odd journey to treatment. I was told to come back in a year. But, I went back to clinic in 6wks w/o appt to ask for HepA vaccine they had offerred, hoping to ask nurse some questions.
Somehow this chance meeting turned into getting scheduled treatment. At some point the nurse came back in room and asked if I would agree to a biopsy and I gave a weak no. When she returned, I said I would if I had to to get treatment. It was no longer an issue, sorta confirmed what I'd read, like a "for the record" thing,
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Thanks, Motor. Liver-friendly diet and exercise worked for a long, long time. Now, not so much. Sticking to it, though.
Lynn, can't thank you enough for the specifics. Never bothered with Express Scripts. Thought it was mostly for the convenience of mail-order delivery. Rite-aid is next door to my grocery store so they're our family pharmacy. Obviously, they won't be for this new course of medication.
So it looks like I'll be working with Express Scripts for access to the Specialty Pharmacy Accredo. I've never had to use this route - can't imagine medication this expensive would come by way of the U.S. mail?
But I'm getting ahead of myself. New labs and fibroscan first. And establishing a relationship with a new doc. **gulp** from topic of OP.
Also, viral load count was 15 months ago. And I did have a biopsy in 1995. "Chronic persistent hepatitis with necrotic tissue." That biopsy has its own bizarre backstory and is the reason I never had another one.
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Per the AASLD (American Association for Liver Diseases) guidlines they put Harvoni and Viekira Pak on equal footing as far as recommended treatment for tx naive gt 1a as well as Sovaldi Olysio for that matter.
Yeah Express Scripts says I can get the meds from another source but will have to pay full price if I don't receive the meds through them. Not a lot of choice there. Yes the meds come from Tennessee via either Fed Ex or UPS 2 day. Sometimes they ask me if I want to sign for the meds well as we are talking about $31,500 a bottle I think that would be a good idea.
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Okay, maybe worth elaborating on that biopsy 20 years ago. I was young, healthy and newly diagnosed with Hep C by my GP. Next time I was there for an unrelated issue, I saw one of her colleagues instead. She noted that I was Hep C positive and was very adamant that I go in for a biopsy ASAP.
Biopsy was horrific. Referred pain in my left shoulder that felt like I'd been hit with a baseball bat. Vomited from the pain. It was presented as a "painless procedure".
Next time I saw my regular GP she saw that I'd had a biopsy and basically read ME the riot act. Unbelievable. "I can't believe you let them do this. You don't do a procedure that has a mortality rate on a perfectly healthy patient."
I told her she needed to get on the same page as the other doctors in her practice. That I obviously hadn't walked in and asked for one. And what do you mean, it has a mortality rate?!!?? Nobody told me that. Not her partner, not the staff at the UW doing the procedure. If I'd known that, I probably would have declined out of common sense.
Anyway, nice to have a baseline from 1995, right? No. UW lost the records. My current GP, good doctor thought she is, shrugged it off with "it happens all the time."
So my info from that biopsy is memory alone from a review at the follow-up appointment at the UW.
My understatement of the year: I am leery of the medical establishment. >:(
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Hi friends ,
Elsie , first let me say thank you for articulating my experience, I didn't have to recite my life in hepc, you did that really well, second for the record I endured 2 of the biopsies, the second one almost did me in! One in 95, 2nd in 2003.
I wish I could have read these stories 25 yrs ago, but life is learned in the rear view mirror! I agree with your opinions also relative to Drs. I have learned to listen and make decisions based on wisdom, not just blind trust in a person with an Md attached to their name.
One thing that cured me from stigmas is this, along the way I had to face consequences of my life choices, I made some choices that put me in danger and caused me much suffering, I wished to God I could undo hepc and liver damage,
But I found a new start in Christ, and I have let go of blaming myself for choices made 40 yrs ago, and I can look anyone in the eye and say your opinion of me does not outweigh Gods opinion of me!
@21 yrs old my lifestyle changed, my habits, my life, hepc is a slow death, but Christ gave me new life, and I'm still here! Amen!
@57 I'm still kickin and fighting this devil we call hepc!
Thanks for sharing your story, and I hope you get treated sooner than may!
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I've got to jump on the biopsy bandwagon.
"Oh, it's nothing. They'll give you some Meds to make you groggy. Then it's just like a little pinch." "Nothing," my big white butt! Doctors never believe me that anesthetics don't work well. So there was that pain. A few days later, I landed in the ER with severe pain in my liver, an infection in my liver, strep from hospital outpatient, and phlebitis from the IV.
Thank GOD that biopsy was soon enough in the past for Medicare to approve my Harvoni. I am NOT doing it that again.
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Yeah I had 4 biopsies over the years not fun they kept me waiting in the prep room for a little too long and I was half way to bailing and walking. I was there by myself so no anesthetic permitted. Not fun at all biopsies.
Up side to getting diagnosed with cirrhosis no more biopsies needed nothing higher than F4 to check for.
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Yeah I had 4 biopsies over the years not fun they kept me waiting in the prep room for a little too long and I was half way to bailing and walking. I was there by myself so no anesthetic permitted. Not fun at all biopsies.
Up side to getting diagnosed with cirrhosis no more biopsies needed nothing higher than F4 to check for.
OMG I don't even want to imagine that.
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Up side to getting diagnosed with cirrhosis no more biopsies needed nothing higher than F4 to check for.
That IS an upside. I like your style, Lynn. 8)
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When life gives you lemons make lemonade ;)
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Per the AASLD (American Association for Liver Diseases) guidlines they put Harvoni and Viekira Pak on equal footing as far as recommended treatment for tx naive gt 1a as well as Sovaldi Olysio for that matter.
Yeah Express Scripts says I can get the meds from another source but will have to pay full price if I don't receive the meds through them. Not a lot of choice there. Yes the meds come from Tennessee via either Fed Ex or UPS 2 day. Sometimes they ask me if I want to sign for the meds well as we are talking about $31,500 a bottle I think that would be a good idea.
My refills are FedEx next day signature required. On the first refill I've already got I heard heard the FedEx truck drive up. By the time I got out there, he had already handed my Harvoni over the fence to my neighbor who was working in his yard to give to me and was leaving. :-\
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Well that is just great :/
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::) Love the story about Harvoni handed over the fence to a neighbor! Sounds like the way packages are delivered in my town.
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I live in a great area but not every area nearby is great.
I have seen several reports on our local news of thieves following UPS or FedEx trucks and snatching packages off the porch seconds after the truck drives off. They often don't even know what they are stealing. Would probably see my little bottle of meds see they are not a drug they are interested in and throw them down the ravine never knowing they just threw $30,000 out the window of a life saving med.
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That is scary that the driver handed it of to your neighbor. Hopefully you know each other well. We do not have any problems here but I am not in a city. I have seen those reports also. They are very disturbing that thieves would jack stuff from peoples porches.
~ Skycatcher
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I live about 5 miles outside a little suburban town about 50 miles from Seattle. Basically we are a bedroom community for the areas larger employers. You just never know.
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Well, Fedex struck again. :-[
My third and last bottle of Harvoni was to have been delivery tomorrow on Thursday. We planned to be here and waiting until it showed up. I was in bed trying to go back to sleep today and my dog went nuts barking then I heard a tap, tap, tap on the door. By the time I got up, dressed and to the door there was nothing but my Harvoni laying in front of the door and my neighbor's dog in my back yard because he had left the gate open. >:(
Right on the box were two stickers that said Thursday and one of them had the signature required notice.
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If it's any consolation, that package is insured and FedEx would be on the hook if it was lost or stolen.
Best wishes, Mike
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At. 31k. A bottle, that is a big hook!
I hope we don't have to worry bout thieves! And black market hustlers!
I had em deliver to my work, and had the armored car ready!
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if you search your tracking number on line and go to the fed ex site you can change your delivery from your house to a local storefront location for free I just found this last month so today I got my last bottle of Harvoni at my local fed ex location.
This of course means you have to find out the tracking number.
I can't have them delivered to my work. I work at a large secure facility. They would have to wait at the gate or maybe give to the security guard and I would have to jog my butt over to the gate
Too late to help you David but glad you got your last bottle congrats.
But for the others receiving meds both Fed Ex and UPS may have an option to deliver to a nearby store front location. It is called hold for pick up. Much better than dozing on my living room couch at 8 am and hoping they don't make me late for work in the afternoon. Again.....