sexually transmitting HepC

[ram921]

  I've been told from the beginning that HepC is not a sexually transmitted disease, but blood-to blood. My significant other believes otherwise, much because her obgyn and other doctors recoil in horror when she tells them of our unprotected sex. We are long-term monogamous, and do not participate in any high-risk behavior. I've had Hepc for at least 10 years, and haven't given it to her. I respect her feelings, but feel her fear is unfounded.  I believe the whole business has driven a wedge between us, but my feelings are invalid because I am the one with the illness, but that's another issue.

[R Glass]

Thanks, that is the first time I’ve read this study.
I wish it were mandatory for all of the Medical Profession to read it. If this were the case, people like Ram and Isabella would not have to go through this.
HCV is hard enough on us Physically and Mentally. The last thing we need is our relationships to be damaged because of out dated information.

This part grabbed my attention “corresponding to 7,760 person-years of observation”
How does one apply for the job of an observer?

[dynamo17]

the expert on the hep c forum here (who is more than likely MUCH more well versed in hepatitis than your PCP) says that hep c is NOT transmitted sexually.

[Isobella]

Sorry if I caused confusion.  

Perhaps I could have said it better.  

Sexual transmission is rare.

The chance of a mother passing it to her newborn is 6%.

My doc will still spew the 6% sexual transmission myth.  Per incidence.  I will print this info so she can enjoy a little light reading.  :-)

[cascades91]

No Evidence of Sexual Transmission of Hepatitis C among Monogamous Couples: Results of a 10-Year Prospective Study

The risk of sexual transmission of hepatitis C virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years. Seven hundred and seventy-six (86.7%) spouses were followed for 10 yr, corresponding to 7,760 person-years of observation.

One hundred and nineteen (13.3%) spouses (69 whose infected partners cleared the virus following treatment and 50 who ended their relationship or were lost at follow-up) contributed an additional 300 person-years.

All couples denied practicing anal intercourse or sex during menstruation, as well as condom use. The average weekly rate of sexual intercourse was 1.8.

Three HCV infections were observed during follow-up corresponding to an incidence rate of 0.37 per 1,000 person-years. However, the infecting HCV genotype in one spouse (2a) was different from that of the partner (1b), clearly excluding sexual transmission.

The remaining two couples had concordant genotypes, but sequence analysis of the NS5b region of the HCV genome, coupled with phylogenetic analysis showed that the corresponding partners carried different viral isolates, again excluding the possibility of intra-spousal transmission of HCV.

The authors conclude, “Our data indicate that the risk of sexual transmission of HCV within heterosexual monogamous couples is extremely low or even null. No general recommendations for condom use seem required for individuals in monogamous partnerships with HCV-infected partners.”
06/21/04

Reference
Carmen Vandelli and others. Lack of Evidence of Sexual Transmission of Hepatitis C among Monogamous Couples: Results of a 10-Year Prospective Follow-Up Study. American Journal of Gastroenterology 99(6): 855-859. May 2004.

[cascades91]

The 6% figure you read in a previous post from Isobella which has been repeated several times was NOT related to sexual transmission, it referred to transmission from an HCV infected mother to child at birth and as per Isobellas vague recollection.

The actual risk of transmitting HCV sexually between monogamous partners based on the best research is so extremely low that it is nil.  Those doctors who suggest that there is a possibility are either erring on the side of caution, that theoretically it is possible and imagining scenarios where this could possibly occur, such as blood letting ceremonies or open bleeding sores from venereal diseases,  OR they are just not adequately informed.

There are many doctors who really are not informed and up to date on this subject including ObGyns who SHOULD know but they often do NOT.  HCV  is not within their specialty or professional experience.  

See the research summary that I will post below, copy it and show it to any doctor who is not up to date on this.

I was informed that at one time, up until maybe 5 years ago? there was no separate government funding for HCV research and that the funding had to come from the funding that was allocated for STD's (Sexually Transmitted Diseases) and that this is how the fear of HCV as a sexually transmitted disease all began.  In fact there had been no legitimate research that showed HCV as a sexually transmitted disease and there still isn't.  There is excellent research (which will follow this post) that concludes or proves if you will,  that HCV is not sexually transmitted.  

Medical professionals especially must get up to date on this issue.  They tend to be several years behind the research if it it is not within their own specialty.

The stigmas associated with HCV are already terrible and the general medical care I experience as a result is likewise terrible because the poor peoples clinic that I have to go to (because I am on low income medical disability) automatically  presumes that I am an IV drug addict because I have chronic hep-c.  I've never been an IV drug abuser.  what I personally have to deal with at this clinic  truly is a nightmare!!  If I was not so debilitated I would sue this clinic for malfeasance and malpractice and I would win the suit but I am too weak to pursue it.  (this is best reserved for another topic of discussion if I ever get the time and energy)

To add an STD stigma (when it is not true)  to an already bad stigma associated with HCV is going way too far and is way too degrading.  I have had to deal with this scenario, doctors thinking that it is an STD on several occasions, all dealing with spouses being completely misinformed by their doctors and I think this  is one of the worst things a doctor could do to a family relationship.  

If you have been a victim of this  you need to complain and  bring that doctor up to date.

[eureka254]

Isobella:
ROFL as well... until the rest of your post sank in.  
I'd like to bop BOTH your pcp AND ob/gyn squarely on the foreheads with a big fat wet noodle.  (Or better yet, a big fat explanted hep c liver and really scare the living daylights outta them.)  Few things make me hotter and madder than morality-driven ignorance (or ignorance-driven morality, take your pick) in the medical profession.

ram921:  you pointed to the "moralilty-based barometer"
----------------------------
Hep c really forces it from every angle, doesn't it?  I tend to think that this disease is all-pervasive... it colors everything. (Hey, it's NOT all about sex ;)...)  Everyday things take on exponential importance that didn't before... a simple paper cut... having a nice steak or a glass of wine... mixing up toothbrushes... sex is only one aspect of our lives that bears the pressure of having hep.  Everything about and within the relationship (which is always a work in progress anyway) has even more to sort out.  It really hastens the timeframe in which couples are forced to think about things:  responsibility, dependency, mortality, cooperation, acceptance, success, failure, blame, guilt, control ... all big-time issues that many of us don't want to compromise on.  Dealing with this disease and treatment forces us to confront all these things head on in a very short time... and not everyone does it gracefully.  Doing it as a couple is truly a challenge.  Lots of people just let this disease take its course quietly and never deal with it and the change and growth dealing with it forces on us...

I hope you and your wife get closer during this journey.
~eureka

[ram921]

  The whole monogamous vs. "other"  was puzzling to me, too. I mean, it sounds like a morality-based barometer of some kind. Us: Together 20 years, hepC for most of them, diagnosed for nine of them. Sure, we're monogamous and all, but...once upon a time sort of a Tommy Lee- Pammy Anderson thingy. (And he gave it to her via a shared-needle wedding band tattoo, she claims.)  Anyway, I've got hepC and she does not.  Like Oodin stated, perhaps there is something else coloring her feelings.  I've offered condoms, but  not well received.  And "alternatives" are fine with me. The point is that I've never rejected any option out of hand (more unfortunate wording). This issue even influences my decision re Tx. (That's why I bristled at the implications that I'm inconsiderate of her feelings about this.)  She requested I post the question. I'm beginning to think she was hoping for something to further quash my position on the matter.  I believe she's still happy in the relationship, But again, those are separate issues. Thanks to all.

[Isobella]

You guys crack me up!!


That whole 6% per incidence arguement is what my PCP uses with me. Making it a pretty sure thing that my hubby would be positive after 23 years of marriage.  She drives me nuts with it.  

[HCA]

The sex part stops when they are married but the rough is only just starting.

[jmjm530]

That's been my experience

[R Glass]

Thanks Jim, it all makes since to me now.
The chances of having rough sex drops 94% for monogamous couples, thus leaving the 6%.

[jmjm530]

I think it might have something to do with more incidences of STDs with non-monagamous couples. Less STDs translate into less chance of virus penetrating tissues, i.e. less sores, etc. Also, don't people stop having "rough sex" by the time they are married :)

[R Glass]

I never really quite understood this 6% chance for monogamous couples.
How could the 6% chance apply the same to a monogamous couple that has been together 3 years versus one that has been together 30 years? Or if it is 6% chance every time they have intercourse? If this is the case, after 16 times the rate jumps to .96% chance. Personally, I think the whole study is Cr@pola

[mremeet]

I don't remember all of the intricate details concerning the risk of sexual transmission, but I recall HR discussing this some time back. Hopefully someone can find the post, because my complete and accurate recollection of it is hazy (partially because I didn't understand all of it). But from memory he said there is a sort of localized partial immunity to HCV at the tissue level. By that apparently there is a first line of defense in our immune system that starts in the actual tissues that may come into contact with an infected person's microdroplets of blood (as occurs in sexual contact). He always refers to all these different immune response "pathways", and this was one of those pathways - a first line of defense, entry level pathway. There was some kind of test he referred to that could detect if certain cells in tissues had been exposed to the HCV virus (in those who were not infected and had never had HCV in the past). And that testing showed that those who had contact with someone with HCV actually "lit up" (i.e they luminesced) indicating that those cells recognized the HCV virus revealing they had in fact been exposed to the HCV virus in the past, even though the person themselves had never contracted the disease.

I recall he said these immune pathway cells are "educated" in recognizing low level contact with the virus, and once they are educated they serve as first line defenders. These "defenders" were thought to probably be responsible for protecting a spouse from becoming infected by an HCV+ partner, and may be why transmission rates are so low (and even seemingly non-existent) in monogamous couples. If I remember correctly he said these first line defenders can lose their memory of HCV in a relatively short period of time (compared to antibody decay rates etc), so it was thought that if a monogamous couple stopped having intimate contact for a prolonged period of time, the uninfected partner's protection may decrease to a point where they may not carry as much protection as they normally would. In other words, having sex more frequently with their infected partner would keep the primary pathways "refreshed" with ongoing contact with the HCV virus. If intimate contact stopped over a relatively long period of time, the primary pathway's may lose their effectiveness at stopping the virus from a successful invasion (should there be a significant contact to initiate an actual infection). If this described (and theoretical) mechansism is accurate, it would also help explain why monogamous couples have such an ultra low transmission rate when compared to those that were sleeping around with multiple partners and happened to encounter an HCV+ person without the "educated" primary immune pathways as described above.

[nygirl7]

Usual guidelines are that condoms are not recommended for monagamous couples.  
---------

I asked my doctor why - why is it any different for a monagmous relationship or if someone is 'dating' (just curiousity).  

He said that it's a rather archaic tool to use - that they figured that if someone has had multiple partners in a few years that the chance of transmission is higher because they would have less saferR sex practices than an old married couple. I found that to be the most ridiculous thing but there you go. I guess you know for non-married couples they are all just sexually crazed deviants hahaha.

But that is the explanation that he gave me.   So, I think the whole "monogamous" thing means if you are practicing safe'R' sex practices you are relatively safe and that the low low number of possibility is just covering their butts in case you are doing things not considered safeR sex.

[Isobella]

I will add that my PCP is totally convinced that I got this sexually.  We argue facts and statistics constantly.  I finally told her, if that is what she needs to believe for some reason or to document it in my chart...go for it, but I totally disagree.  

I swear it's like she wants me to admit to sleeping around for some warped reason.

And my ob/gyn is absutely clueless as well.  

My point is-she may have a hard time convincing her docs otherwise.  It is possible she cannot convince them at all.  She may need to hear it from a good hepatologist/GI doc.

Once again...soon to be a moot point, as you are on your way to SVR :-)

[jmjm530]

My significant other believes otherwise, much because her obgyn and other doctors recoil in horror when she tells them of our unprotected sex.
-----------------------------------------
Her doctors are off base compared to the  what the Center Disease Control (CDC) an and most liver specialists would say and advise. This is not surprising since Hepatitis C is not understood very well, even within the medical profession and that's an understatment.

Usual guidelines are that condoms are not recommended for monagamous couples.  Perhaps you could go to the CDC site and printout their guidelines,  or have her talk to a liver specialist,  and not a doctor who probably has no inkling about Hep C. After that, if she is still concerned, condoms are always an option until you get treated.

All the best,

-- Jim

[Isobella]

Sexual transmission is rare......just like it is  rare for a mother to pass the virus to her baby during birth......like 6%.  As I have said before, the statistics seem small-unless you are one of them.  


I agree with Trish...maybe "opt for alternatives" for a while....because as you said-it's all academic-you are treating soon and on your way to SVR so all this will be a moot point!



I know this is hard on relationships and I do wish you the best.


Take care,

Isobella

[Jakied]

Sexual transmission of Hep C is rare.  When sexual transmission does happen, it is

usually male to female.

[FlGuy]

My earlier reply was to attempt to look from her point of view, not minimize the situation.  From my experience, it's not easy (may be not even possible) for a husband to see a wife's point of view on a lot of stuff. We've been married for more than 20, all of it with me and hcv but diagnosed for only a few of those years. She and the kids were not infected along the way.  But, upon dx, some things were a little weirdly different. Thing is, there is a risk even though it's small. And, if there's a risk, it's not entirely unreasonable to have a fear of it.  If you go through tx or take other measures in the meantime, will things be better?  Didn't mean to be insulting back there.

[ram921]

Thank you. More to the point. No harm done.

[eureka254]

Your post really didn't have an outright question, and really I just took a shot at trying to help in response.  Like Odin, I don't think people where making judgement... rather trying to judge better what exactly you were looking for since your post stated your feelings rather than asking a direct question (which is fine), but it leaves us trying to assess what kind of feedback you were seeking.  

If you're looking for firsthand feedback:  my husband has probably had hep c for almost 40 years, we've been together 22 years, frequent unprotected sex, some 'risky' business, I'm hep c negative.  

It's all about removing wedges, hmm?
~eureka

[Odin999]

Don't think anyone really means to have a go at you for being selfish or insensitive. Maybe we all know from personal experience the strain that chronic illness can put on relationships. Almost every piece of documentation I have ever come across says something similar (already stated above). Perhaps that is why we started asking you other questions. All the evidence points to very low risk -> next questions => why doesn't she feel comfortable, or is there something else affecting her feelings?

Best of luck sorting it out.

[ram921]

Thank you. Perhaps "unfounded" was an unfortunate choice of words.  The context I  meant is, "in the face of everything we've learned, and after ten years of being aware of the infection without passing it to her..." Jesus. I'm sorry if it sounds as if I am invalidating her feelings!  The original question was directed at gathering more information about the odds of transmission sexually to provide her with even more first-hand information one way or the other.  Not," Hey, Do you think I'm selfish and insensitive?"  Nothing has changed, we've both been aware of the disease for ten or twelve years, I'm preparing to enter treatment in November, so I guess it's academic. But thanks for the  judgment- there's not enough of that from the gen. public.