Dr. Nancy Sniderman says on-air that HepC "sexually transmitted, and IV"

No, I'm not kidding --

On Dr. Nancy, broadcast daily on MSNBC, she was talking about new NCI data showing HepC patients who drank 3 cups of coffee daily had a 53% less chance of liver disease progression.

Offering her "spin" of this news, she said the best thing to do is to avoid HepC to begin with, "sexually transmitted, and by IV".

I'll go out on a limb to suggest she deserves an increase in her email pointing out the error of her ways, by going to http://drnancy.msnbc.com and clicking on the email link, if I thought MedHelp wouldn't object...hehehee!

[nygirl7]

i think we should all drop her a line and tell her she needs to go back to school fast!  What a dink - I'm going there right now!  Mix old news with wrong facts.....just what we need. Why not mention the trial drugs or good things that are going on?

[neptune235]

No kidding!  Just so much wrong there.

No idea what she meant by the "and IV" part.  Did she mean "injection drug use" or did she mean "by contaminated blood product infusion prior to 1991, when they started testing the blood supply"?

Both of these are more common than sexual transmission, I believe...

[nygirl7]

I don't see any link to email her - only to email the article where is it? I wrote my letter and want to send it to the ignoramous!

[nygirl7]

i found her blog on bewell.com and you can post comments there if you want to you have to register though...but it'seasy enough to quit afterwards  LOL

http://bewell.com/Blog.aspx?blogid=262#

[neptune235]

Just below the video links, the page becomes three columns of text.  The middle column, headed "Dr. Nancy Sniderman"  has embedded links in it.  Click on the text "Got a question for Dr. Nancy? Email us"   :)

[orphanedhawk]

Hey there,
I just checked out the link and saw a line saying, 'email us'.Click on it.
There's also a mail link in the upper left hand portion of the page.

You're probably seeing red instead of whats actually on the page. I do that too!
I'm sending a letter to her as well.
OH

[nygirl7]

I must be blind!  My letter isn't a work of art but I'm in the middle of a project at work which I HAVE to do but this is what I'm going to post (when I find that link finally!)  :)


Dear Dr. Nancy,

Regarding your recent msnbc.com appearance:

In the future, please refrain from giving out misinformation (HepC is transmitted sexually and via IV) as there is enough stigma already associated with the disease.
If you ever frequent a support group for hepc patients you will find that most monogamously married people do not share the disease even without the use of condoms for protection.
Recent studies have shown that it is almost impossible for it to be transmitted this way in fact (if you practice safeR sex practices).

More likely someone would have contacted the disease from innoculations or dentist visits or even the nail salon where they have used instruments that were not sterilized properly.  

Many of us who have successfully treated and have been cured have worked hard to beat it, have studied the journals and new studies extensively and take extreme offense that a Doctor (especially one speaking on television) would provide more fodder for those ignorant people out there who enjoy perpetuating the myths associated with the stigma of this disease.  
Kind Regards.

[orphanedhawk]

This is what medhelp says about HCV:

Causes, incidence, and risk factors

Hepatitis C infection is caused by hepatitis C virus (HCV). People who may be at risk for hepatitis C are those who:

    * Have been on long-term kidney dialysis
    * Have regular contact with blood at work (for instance, as a healthcare worker)
    * Have unprotected sexual contact with a person who has hepatitis C
    * Inject street drugs or share a needle with someone who has hepatitis C
    * Received a blood transfusion before July 1992
    * Received blood, blood products, or solid organs from a donor who has hepatitis C
    * Share personal items such as toothbrushes and razors with someone who has hepatitis C
    * Were born to a hepatitis C-infected mother

[Marcia2202]

Even MH got it wrong.... It drives me totally insane!

Unprotected sexual contact, my a§§§§!

Why can't they get it right?

[FlGuy]

MSNBC huh?  Go figure.

[tashka]

I will definitely e-mail her. Thank you for address. What she said was ridiculous. And she is not alone at all in her blatant ignorance. When my husband was diagnosed, the first questions that we heard from the doctor were: "Did you use drugs? Have you been in prison?" That is how they think you get HepC. This was so degrading. Even if the patient used drugs 40 year ago or have been in prison-how does it matter for dealing with the disease RIGHT NOW? This assertions also downplay the experience of thousands of veterans who got infected by the military, not by drugs, sex, or prison sentence.
There is also another piece of misinformation going around-that there is no cure for HepC. I read/heard this statement twice over the past 2 weeks, both times from MDs (online). Seems that they are just lazy to read on hepatitis C management/outcomes before they make these ignorant statements. Considering that cure has been available for a while, and that many patients achieved this cure, it is very strange  for MDs not to be aware of this.

[nygirl7]

Unfortunately lots of people believe that we are only in "remission" and not cured.  I guess because there isn't enough long term data on SVRs or something.........but yes a lot of MDs say that to their patients.

Makes me wonder why someone would try and do treatment if they think they can't be cured?

[tashka]

There are people who achieved SVR on interferon monotherapy over 10 years ago, and they are still SVR. It is very durable. To me, if the virus can not be detected in patient's blood, and after therapy is stopped, viral load doesn't go up-it is a cure, not a remission.  And surely, many people will just give up on themselves and will not even try treatment when they hear a discouraging statement like this from the doctor. Just like you, I don't understand why would anybody take this treatment for a year, if a cure can not happen. Just to make their lives harder, I guess?

For HIV, for example, it would be correct to say that there is no cure. Drugs suppress the virus very well, but as soon as therapy is stopped, viral load goes up. This doesn't happen when SVR is achieved in HepC patient.

[copyman]

Although I agree that sexual transmission is not usually how someone contracts the disease it is possible.

Especially when having sex with multiple partners or even more risk with gay sex.
Recent studies have shown HCV to be very active in the gay community.

I do belive since it is possible that it has to be included as one of the risks. Better to be safe then sorry.

[neptune235]

I agree completely with what you say!

The problem I have with the broadcast is that my quote of her above is ALL that she said about HepC.  In fact, if she just simply states two causes of transmission without illumination of how frequent those causes are, as she did, whe mainly misleads people.

The take away for people not knowledgable about the subject is that the primary transmission mode is sex, and the second is something called "IV".

[copyman]

I did forget to mention that Nancy was way off base here. Like one of the other posters said, this ignorance is why there is such a stigma attached to this disease! This just adds to why people don't talk about it.
I for one have never told anyone except my wife and a few close friends because I was afraid of what people would think.  The thought of other parents not allowing their kids to come to our house to play with my kids, etc. This is just one example of things that happen everyday because of ignorance of this disease.
Blame this on our goverment for not educating people like they do HIV. They should take some of that HIV money and put it into HCV education !!!

[Joey_M]

Let's not pit disease against disease - we can educate and help people with every illness. HIV only got attention due to the tremendous support and lobbying of the HIV/gay community of which I am a part. And recall that most people died from AIDS within a year which fortunately is not the norm with Hep C. I have not seen anywhere near the level of activism around Hep C which I think is needed to educate and increase awareness.

Good that everyone is writing to this quack of a doctor. But as someone who has been infected TWICE through sex (first time they said it must have been some other way and at that time, didn't understand the high risk for male to male anal sex for HIV infected folks.) Many HIV poz folks I know don't believe they can be infected since a lot of sources keep say it cannot be transmitted through sex and that undermines what the message should be to a significant number of potential Hep C cases. So hopefully one day there will be awareness and no stigma around Hep C (not that that has happened with HIV btw).

[tashka]

Yes, statements like these add to the stigma. We also didn't tell anyone, not even friends. Besides two of us and the doctor, nobody knows. It would be a nightmare if we would inform my husband's huge family. They live all over the country and would immediately start calling and asking if he is a drug user. And children not allowed to play with our child, fear of hugging and staying in the same house-all of it is true. And after a TV segment that we discuss right now, I would probably be advised by the well-meaning relatives to avoid unprotected sex with my husband.

Sexual transmission is possible with hepatitis C, but is uncommon.  We were married for 11 years and had a child before my husband was diagnosed. He has a high viral load. I am negative for the disease. Unlike hepatitis B, hepatitis C is not considered sexually transmitted disease, especially if  traditional sex is involved. I know, if he had hepatitis B, I would be infected, because when we married, I had not been vaccinated.

I absolutely don't want to put one disease against the other. But I was amazed to learn recently that all over the world 170 mln people are diagnosed with HCV  (and millions more already have it, but are not aware of it), and only 33 mln have HIV. It was so hard for me to believe these numbers, because HIV is so much more visible, there is so much activism related to this disease (which is great). Hepatitis C should become more visible also. I wish there would be a symbol for hepatitis C-just like pink ribbon for breast cancer. People should have correct and complete information about this infection, about people who have it, and about transmission.

[his3707]

I believe we do have a ribbon, its red and yellow striped

[IMstacie]

"traditional sex" that's key.  As copyman said it is rampant in the gay community.  Bottom line it is transmitted "blood to blood."

his - good one - the red & yellow stripped ribbon.

[tashka]

Thank you, his, I did not know about the ribbon. I think, yellow is very appropriate-it is the color of the bile.

[becksta29]

Well i will be emailing her too,i like your letter nygirl.
My family have been great about my hep c...i have told 100s of people and i was sick of hiding it so last few yrs iv told more and more freinds and i educate them as much as i can about it and stress to them that they will not get it from me by just having a cuppa at my house and going to the toilet etc,but i still havnt got the guts to tell every single person i know of course,but its my choice and i just tell people who i think are understanding etc.
I was sick of people always saying why are you tired all the time what is wrong with you,why dont you do this and do that and i just dont have the energy to lie anymore. so i guess if the world wants to hate me for having hep c then let em,il just have to hang with heppers and people who love me still,blow the rest of em.
I have never seen the ribbon,thats good to know the colors to look out for,i wish they sold them all over like other diseases etc but honestly i have never seen a raffle or any fund raising thing at the shops etc where i live and there are heart disease,cancer and many more non infectious disease awareness and fundraising things around,dont even see hiv ribbons much....i mean im sure there have been some around but i just havnt seen them.

[smaug48]

Sent my email.

Like becksta, I've been trying to educate people about my HCV when I can.  Sometimes I wonder if it's hampered me in my job hunt, but if people want to think worse of me because of ignorance, so be it.

smaug

[orphanedhawk]

I'm glad you mentioned the fact that so many men contacted HCV from the military.

My husband has stories of inoculations in boot camp. One shot after another, no cleaning inbetween, while guys with blood dripping down their arms stumbling away afterwards.

No doubt the military practices at the time, gave HCV to many Vietnam vets. Could this be the reason for ignoring us and blaming the virus on our 'bad' behavior?

[nygirl7]

traditional sex" that's key."

That is why I said in my letter safeR sex practices.....

[tashka]

This is exactly the way my husband got infected 27 years ago. In a boot camp, all of them were standing in a long line and got immunized with the same air-jet device. He still remembers the blood flowing down everybody's arms.

It was relatively easy for us to pinpoint when he was infected, because there was no bad behavior on his part-ever. Of course, nobody wants to admit that military is at fault. It is much easier to label hep C "the disease of drug users and prisoners".

[mar148]

I have posted to her email website, getting accurate information out is critical.

[orphanedhawk]

My husband tells the same story, as do other friends.
He has HCV but it hasn't been a problem for him. We have the same genotype and I had a tp because of HCV caused cirrhosis.
He's convinced I got it from him but who knows?

You are right, it is easier to blame drug users and prisoners. And it is much cheaper.
If the Vets admitted to how many men got it from them, the government would be paying big time.
Instead they blame the Vietnamese or the uncleanliness of MASH units.
Even without the knowledge of HCV the way those men were immunized is reprehensible.

We knew a man who had cancer from agent orange. By the time the government admitted that they were at fault, he had committed suicide leaving behind a young daughter.

But back to this post, it shows once again how ignorant the public is and how ignorance is perpetuated. Some would call it propaganda.
OH

[annieCinMD]

As someone who is getting ready to have "the conversation" with a new potential boyfriend, this kind of stuff devastates me. Sometimes I wish I never found out I was positive and wouldn't have to bear the responsibility of having "the conversation". After a failed treatment, I was hoping I would at least have been able to put it in past tense or it might have worked. I relapsed at the 4 week mark, and am not quite to the 3 month mark yet. We would still have been having the talk. I just had another old boyfriend come clean about why our relationship fell apart a couple years ago. I had long suspected it, but he wouldn't really say what the problem was. I think I will add to Dr. Nancy's inbox myself. She should do a retraction.

[neptune235]

I remember standing in those vax lines during boot camp in 1976.  This seems to be the most significant risk factor for me, too.  Looking back, it's like we were in the stone age.    

The group of us that were infected this way is larger than Vietnam era vets -- the Vietnam era ended in 1975, when they stopped awarding the Vietnam Service Medal.

[IAmTheWalrus]

No kidding about your husbands memory?  I have that same memory! They lined us up in a gymnasium and we went through the "gauntlet" (usually a couple of shots in each arm) like belt rounds through a M60. There was blood everywhere because some men would flinch or move during the compressed air shot, and the air stream would cut flesh like a razor. It was quite impressive.

Also, it turns out, that the gama globulin shots given to help prevent HepB in the military back then were made with human blood products that, I believe, were found to be HepC contaminated.

We were all just kids then and had no idea about the risks. I do not think Uncle Sam is ever going to fess up, at least not while there are so many Vietnam era veterans around needing the expensive TX.  

[tashka]

Well, 27 years later, when all of this was long forgotten, this day in a bootcamp caught up with us.

[GrandOak]

The red and yellow ribbon has been symbolically used to represent HCV for many years now.  Sometimes even connected with the dragon, which is another symbol for the virus.

I've even seen red and yellow shields used to represent those who are combating the disease/dragon.

I also seen the email us at the bottom of the URL provided at begining of this thread with a request to identify data which claims HCV is sexually transmitted, which would tend to imply body fluid transmission rather than blood bourne when secual means of infection is often used.

[Rosebud41]

Well, I guess anything you hear from Dr. Nancy you better check out.
Maybe Dr. Nancy should keep her day job.
Oh, I almost forgot she's a doctor.
I will send an email maybe one day she will adddress the problem with facts.

Rosebud41

[annieCinMD]

I sent her an email last night quoting the CDC website's FAQ on that particular question. I also suggested she issue a retraction as there is already enough misinformation out there.

[gypsyjoey]

Ok,

So here's the deal.  It is real simple.  Hep-C is transmitted through blood to blood contact....PERIOD!

Joey

[GrandOak]

Your kidding right?

Perhaps you're missing the point that many struggle with the stigma often associated with HCV and particularily with the preceived means of it's transmission.  Also, that most people here are knowledgeable in this disease, having to deal with it head on, and that it is not a mystery on it's means of transmission.

Despite the "known" facts on this "PERIOD" it is bothersome to many to see supposed "experts" going around and continuing to spread falsehoods which allow that stigma to remain intact.  Especially those who are investing large amounts of time and effort in an attempt to educate, support, and help others as well as trying to change the incorrect myths many have on it and how it is transmitted.

Simply take a good look at AnnieCinMD's post on having to deal with this when establishing new relationships to get a better idea.

If all we do is sit around knowing the truth and letting the cperts continue to spread falsehoods, do you seriously think that the stigma will ever be rectified?

[IAmTheWalrus]

I am not sure I understand your comments. The stigma associated with HCV is regrettable in everyone's opinion, I think. Are you saying that portraying HCV as a sexually transmitted disease makes this worse or better?  

I have heard some say that proclaiming HCV as a STD would bring it into the mainstream spotlight and would then be seen as a disease that "anyone" can get rather than just IV drug users. This would be similar to how AIDS activists partray AIDS as a disease that affects everyone, not just homosexual men.

The truth seems to be that sexual transmission is pretty rare, but an argument can certainly be made that it can be transmitted that way.  No doubt there are instances.

I tend to think nearly anything that gets the facts out is a good thing for all. I do not know how to get objective knowledge into the general public opinion. I keep thinking about the study that showed that most high school students in the US can't locate Canada on a world map.  I despair ....  but I digress.

[annieCinMD]

Well, to add to this discussion, I had an appointment with my primary last night to get some sleep meds because I'm still all wound up from tx. She asked me how I got the hep C, was it from intercourse, or some other way. Boy, did I straighten her out! I told her that is absolutely false that it is spread through sex, that it could happen but is not the way most people get it. She went and got her little brochure that she uses when screening patients that may be at risk for hepatitis. We went over the list together (the list of how it is spread) and sure enough, no sex on there. It had Vietnam era (glad to see they are getting honest about that one), which I had mentioned after reading some of the posts on here, and all the other modes of transmission. The brochure was accurate. Hep B, yes, C, no. She thanked me for enlightening her, and I told her about the Dr. Nancy statement, letting her know how difficult it is for those of us who live with it to have to deal with stigma and misinformation. Oh, I had 'the conversation' with the guy the other night. His only comment was "Doesn't Pam Anderson have that?" LOL! I'm a happy camper!

[Andiamo1]

I once saw some statistics that said  1.8% of the general population in the US was infected with HCV.  The number for spouses was over 2%.  I did some Google searches and couldn't find the paper.  Anyone remember seeing this or know the link?

If those numbers are accurate, I think it indicates transmition through shared tooth brushes or razors rather than sex.  Just a guess, but if it was transmitted sexually the percentage of spouses infected would be much higher than the general population.

[annieCinMD]

Eric,

I don't have any numbers to back it up, but you are right, transmission through shared razors and toothbrushes is far more risky than unprotected sex (not anal).

[TexJimbo]

  I Contract HEP c From A DR., Selling,  Donate Blood ........at SUPER HIGH MEDICAL RATES !    SO, I WAS GETTING SCREWED  BUT, THERE WAS NO FORNICATION INVOLVED ..............AND ALTHOUGH I GOT SCREWED I DIDN"T GET KISSED !

[GrandOak]

The part of the stigma I was refering too was people concerned that should their infection become known that they would be treated like a leper instead of a hepper. Perhaps my reference in some folks needing to educate people that it can't be caught by kissing when dating did not add clarity to what I was saying.

We probably do not even want to go into the AIDS discussion and how it seemed to spread from being segmented to a certain section of society to becoming a wide spread disease nor how that may have come about.

I agree that the facts need to be made known, and clearly without the misconceptions that HCV can be caught from toilet seats, kissing, is an STD, etc..

I also feel that it needs to be made clear that there means of contracting it from other than IVDU, a certain clinic in Nevada comes to mind, and that it really should not be a focus of attention on how one may have contracted HCV, but rather that they have and what can they possibly do about it.

Perhaps we should take a survey on how many have been asked, even by their very doctors, if they could identify how they might have contracted it.  In the end, what does it matter, what needs to be made clear is that it is known a pereson is infected, that they can take precautionary steps to avoid spreading it which do not prevent them from living a normal life with healthy relationships simply by avoiding blood to blood contact and in so doing dispel the stigma that they may need to live in a bubble once diagnosed.