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New Study Debunks Negative Hep C Stigma

June 2, 2016

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In baby boomers, Hepatitis C infection appears to be a casualty of modern medicine’s evolution – not a consequence of risky behavior.

Hepatitis C is a disease that frequently carries a stigma, which is defined as shame or disgrace attached to something regarded as socially unacceptable. The main reason for Hepatitis C’s stigmatization is the assumption that this infection was acquired due to participation in risky behaviors. However, a recent analysis of the largest generation impacted by Hepatitis C, baby boomers, disproves this assumption.

Baby Boomers

An estimated 6 million people in North America, over half of which reside in the U.S., are infected with chronic Hepatitis C. Experts estimate that 75 percent of people with Hepatitis C are baby boomers, those born between 1945 and 1965. Because Hepatitis C is frequently asymptomatic for decades, many baby boomers remain undiagnosed.

According to the CDC, baby boomers are five times more likely to have Hepatitis C than those in different generations. In May 2012, the U.S. Centers for Disease Control (CDC) announced a recommendation that all baby boomers get tested for Hepatitis C. By testing those born between the mid-1940s and mid-1960s, the CDC proposed that an additional 800,000 people with Hepatitis C would be identified and diagnosed – potentially saving the lives of hundreds of thousands of people.

Previous studies have identified infected blood products and experimentation with injection drugs as the main factors driving the spread of Hepatitis C in baby boomers. Although there can be several ways to acquire this blood-borne virus, the potential of injection drug use as the cause of infection has shrouded Hepatitis C with a negative stigma.

The Canadian Debunking Study

A Vancouver-based retrospective phylogenetic study examined the timing of the initial spread of Hepatitis C virus genotype 1a in North America by analyzing over 45,000 sequences. Genotype 1a is the most dominant Hepatitis C strain in the United States. As published in a March 2016 edition of The Lancet: Infectious Diseases, the researchers found:

  • The majority of the spread of genotype 1a in North America occurred before 1965.
  • Hepatitis C saw its greatest infection rates between 1940 and 1965.
  • The effective population size of the North American Hepatitis C epidemic stabilized around 1960.

More specifically, the Canadian phylogenetic analysis strongly suggests that the period of 1948 to 1963 saw the biggest expansion of the Hepatitis C virus – substantially earlier than previously thought. According to the authors of this study,

“Based on our results, the oldest members of the demographic cohort with the highest burden of Hepatitis C virus (the baby boomers) were roughly five years of age around the peak of the spreads of genotype 1a in North America in 1950. Thus, it is unlikely that past sporadic risky behavior (experimentation with injecting drug use, unsafe tattooing, high risk sex, travel to endemic areas) was the dominant route of transmission in this group.”

The patterns identified point to unsafe medical procedures as the root cause of Hepatitis C’s spread among baby boomers. The early expansion of Hepatitis C coincided with the increase in the number of medical procedures conducted during World War II and its immediate aftermath:

  • After World War II, injection and blood transfusion technologies were still in their infancy.
  • Prior to 1950, injections were given in glass and metal syringes, which were sterilized manually and re-used.
  • Improper or incomplete sterilization could easily transmit small blood-borne pathogens, like Hepatitis C.
  • Eventually, disposable syringes were phased in between 1950 and 1960.

This study demonstrates that the spread of Hepatitis C between 1948 and 1963 is a casualty of the development of modern medicine.

The researchers hope their findings will help de-stigmatize Hepatitis C infection in the baby boomer generation and encourage more people to access testing and potentially life-saving treatment. By spreading this information, the origins of Hepatitis C become clearer – and any negative stigma associated with this virus will transform into compassion for those afflicted.

http://hcvadvocate.org/hepatitis/factsheets_pdf/stigma_guide.pdf, A Guide to: Stigma & Hepatitis C, Lucinda K. Porter, RN, Retrieved April 24, 2016, Hepatitis C Support Project, 2016.

http://www.aidsmap.com/page/3047870/?utm_source=NAM-Email-Promotion&utm_medium=aidsmap-news&utm_campaign=aidsmap-news, HCV epidemic in North America peaked between 1940 and 1965 with medical procedures likely source of most infections, Michael Carter, Retrieved April 24, 2016, NAM Publications, 2016.

http://www.cdc.gov/knowmorehepatitis/Media/PDFs/FactSheet-boomers.pdf, Why Baby Boomers Should Get Tested, Retrieved April 24, 2016, US Centers for Disease Control, 2016.

http://www.healthmap.org/site/diseasedaily/article/cdc-recommends-hepatitis-c-testing-all-baby-boomers-52412, CDC Recommends Hepatitis C Testing for All Baby Boomers, Lauren Edmundson, Retrieved April 24, 2016, Health Map, 2016.

https://www.hepmag.com/article/looks-like-boomers-get-hepatitis-c-youthful-drug-use, Looks Like Boomers Didn’t Get Hepatitis C From Youthful Drug Use After All, Retrieved April 24, 2016, Smart + Strong, 2016.

http://www.ncbi.nlm.nih.gov/pubmed/27039040, The spread of hepatitis C virus genotype 1a in North America: a retrospective phylogenetic study, Joy JB, et al, The Lancet: Infectious Diseases, March 2016.

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  • Cecilia

    this is what I have been sayong for 3 decades as in modern medicine I have been stigmatised sone the 80’s when i contracted hep A working in unsanitary conditions an I got B from my drug Iv User ex he was a carrier an had no clue I was in a coma for 51dys hepatic and I was born on 61 permiscious i wasn’t a drug user either,no blood transfusions I think it is people not taking care of them selves spreading gems an resturants are the worse.My dad had it at age 7 he was borni 1938 Hep A I have had been diagnoised with Hep C 15yrs later so 35yrs in all I have tried it all u know when its taken its course time to live ?

    • trotter

      You’ve been through it for sure. Hep A and Hep B do do not cause Hep C. They may lessen your immune system and then, when the Hep C virus comes you’re more likely to become chronic.
      Have you taken new treatment? If u can, do it.
      Hep C has been shown to take 15-20 years of your health (do u have symptoms, but think it’s old age?) and u likely will die 15-20 yrs. earlier.
      Do u have kids, grandkids, greats to live for. If not, u are worth living for. Try it.

  • Michael Junghann

    Most excellent article. Got my dose, I thought, while serving in the Army, pneumatic injectors, blood transfusions come to mind. VA admitted responsibility. But, who knows now, we all had injections as kids, dentist… Stigma? What stigma?

    • trotter

      Vietnam vets did get Hep C disproportionately because they used the same needle (or gun). That and transfusions, they say gets such an amount of blood right into your veins. Let the VA pay for it, I figure.

    • Cecilia

      Michael, I cannot wait to get my dose, as I sit here waiting to get approved for this medicine, I live in the sunshine state sometimes I wonder if it really means shine on state? I get the bull push back & forth as to this is not a life threating issue as they are stigmatizing me!! I never in a million years want to depend on this state for anything as I worked my whole life & at this point I cannot anymore as I turn 55 this year to start having to have vocational rehab this late in my life as they think that is what I need!! I jest went through another whole ordeal of tests again to have the CDC call me to accept me for I have no insurance. I worked a job for 2mns in 2015 that carried open insurance on me for the 15mons under my nmae no knowledge an had to prove I did not have as I was accused of Insurance fraud. Unbelievable under the Hippa law I’m falsley insured an denied from the Big Dog Pharma Company because I have this & it took me 4mnths to clean it up,so state Dr’s 7 dysfunctional clinics I will be lucky to see when this will happen I want to write to Gillead myself ?

  • Champ86

    Look at this, they say 6 million have it, treatment costs 100K, or a Million $ for 10 people, that’s 600,000 Million $ or 600 Billion total to cure the infected. Medicare, Medicaid, and Fed Health programs are about 78 billion a year, 600 Billion is close to all the $ spent on Defense, in the US, annually. And the drug that sells for $1,000 a pill, costs less than $5 to make. Don’t let Drug Co’s ruin our economy with their greed, tell your Representatives they need price controls, or only a few will be cured, and that’s like no cure at all.

    • Toster

      Isn’t that the same as asking the wolf to protect the hen house? If the FDA and the AMA and our representatives were not corrupt that might work. Pharma is a muti billion dollar industry and the FDA charges a billion dollars to bring the drug’s from the early stages to market.

      • Champ86

        T, you realize I’m showing you a .6 trillion $ cost, almost 10 times the entire Medicare budget, don’t you ? Where do you think $ like that, for one virus, will come from ? We won’t ask seniors to go without ALL their Medicare for 10 years, to pay for, ONE virus will we? They(Pharma) have Billion Dollar law firms, yet in India their $100,000.00 cure, costs Indians only $600, and Pharma still profits. So, OK don’t take it to our Representatives, fine, now, what’s your plan ?

        • Toster

          Do you really think contacting our reps will help? I think we need to clean house and start over. I think all they care about is power and money. I wish I had more detailed information to give you but I don’t think it is fair to blame pharma only. It doesn’t take a genius to figure out that the govt and the FDA,AMA and pharma etc. are colluding and they are fleecing the sheeple and thinning the heard. If you really need the meds you can buy from India if your insurance won’t pay.

          • Champ86

            No, you need to appear physically in India, get Indian Dr, it’s very controlled in India, commerce is very controlled by Govt. OK, how do you propose to “Clean House” ?

        • trotter

          Studies have shown that if all the Hep C people were treated right now it is still less than caring for us for yrs. down the road. And do you know the current AIDS budget? Check it out.

  • Michelle

    Very interesting, but what I thought the virus wasn’t really found out about until the 1980s.

    • does not mean it did not exist

      • Deborah Boutland

        Exactly.

    • Marc

      Yes, there was no test for it until around 1982. And I believe it was called hepatitis non-A or B.

    • BabyBoomer2

      Earliest confirmed case of HepC was found in a tissue sample of a dead U.S. Army soldier, who died in 1945. Decades later, the sample was found to contain HepC. 1992 was the first definitive test for HepC. Prior to that, it was known as “Non-A-,Non-B” Hep, and rarely detected even then. HepC is suspected to have existed as far back as 400 B.C.

  • David Pieper

    I question the validity of this research. Virtually everyone I have ever spoken to with hep C can trace it back to experimentation with drugs, even just once or some one of the other known means of transmission. There is no doubt that stigma is a barrier to getting more people tested and treated and anything we can do to break down the stigma is a good thing

    • Alec Markov

      I didn’t think that it was possible for anyone to be so ignorant and ill informed on this topic but for you, Mr. Pieper, I will make my point briefly and bluntly:

      I acquired HCV from a blood transfusion and have NEVER used a needle to inject narcotics and you have no right to smear countless numbers of people who were infected the same way. I do not know if you have the character or the intelligence to apologize for this vile insult, but I had to say my piece. You are an ignorant man, Mr. Pieter and by making such a ridiculous statement, you show yourself for what you are: an idiot.

      Disgustedly,

      Alec Markov

      • David Pieper

        No offense meant Alec, I did refer to people I have spoken to and the other known means of transmission (which includes transfusions). My point is that guilt and innocence are not relevant concepts in speaking about a chronic disease like hep C. People who inject drugs, do not deserve stigma any more than people who acquired it in other ways and treatment for them is just as important as for you.

        • Alec Markov

          Okay, well….I apologize for losing my temper but as you can see, this is a sensitive topic for me because when I first discovered that I had been infected more than thirty years ago, I was subjected to the fear and loathing that some of my friends and acquaintances exhibited and this was very distressing. Fortunately for me, I was lucky enough to be treated with a new drug, Harvoni, which did in fact cure me, for which I am very, very grateful. There are currently about three and a half million people in this country infected with HCV, many of whom do not even know that they are infected. Research, funding and education are needed as this is a public health menace of the first order and while the new drugs are vastly superior to traditional modes of treatment, the price of these medications are spiraling out of control. I agree with you that it serves no purpose to lay blame but sadly, this is human nature but hopefully, this situation will improve with time. Once again, I apologize for losing my temper but I am glad that we had the chance to come to a better, more amicable understanding of this matter.

          Alec Markov

          • Master las

            Please sir how long did you use the drugs before curing you please remember some of us that are still leaving with it

          • Alec Markov

            This is to Master las….I started the Harvoni treatment on November 26 and concluded it on, I think, May 16…usually, people who are ‘treatment naive’ which means that they had never been treated for HCV before, were usually given a 12 week regimen. The percentage of people who respond well to the medication and who are cured is between 96% and 99% and the medication is well tolerated and has very few side effects. However, a number of people do, in certain cases, experience some unpleasant side effects, especially if they have cirrhosis or if there is evidence of necrosis (cellular death) of liver cells. Theoretically, Harvoni can sometimes reverse the effects of cirrhosis but this is a rarity and not, under any circumstances, can it ever be guaranteed. However, most people who have HCV without liver damage are usually able to achieve a cure and become SVR (SVR = “Sustained Virologic Response”) although the regimen can sometimes be as long as 24 weeks, which was in fact my own situation. People who had undergone an unsuccessful treatment consisting of Pegylated Interferon and Ribavirin lasting 48 weeks are no longer considered “treatment naive” and in such cases the doctors will push for 24 weeks which, in fact, increases the probability of being cured but some insurance carriers refuse to pay for treatment lasting 24 weeks as the cost for treatment of that duration can be as much as $200,000. The first regimen of treatment involving Interferon and Ribavirin was, in my case, highly unpleasant in terms of the side effects and after 40 weeks was unsuccessful and discontinued at my doctor’s request. The exorbitant cost of Harvoni (created by a pharmaceutical company called Gilead) has been the source of great controversy so if your insurance company is willing to cover the cost, then you can be treated. But I must tell you frankly that some insurance carriers refuse to do so but there are ways around that obstacle. Your physician or your insurance company can determine if you are eligible for the treatment. Also, I am genotype 1a which is what 70% of the people in this country are and which, also, has been very difficult to treat successfully. This is one reason why new drugs like Harvoni (there are many
            others, too) represent a great breakthrough in the treatment of this disease.

            I recommend this treatment very strongly as it marks genuine progress in terms of attaining a real cure without the usual terrible side effects of earlier, less successful treatments. I will be tested in about two months from now just to be certain that I will not relapse and stay SVR but this is a mere formality. For all intents and purposes, I am cured of HCV after having contracted it from a blood transfusion and staying infected for more than thirty years. I regard myself as being blessed with good fortune and I wish you the same success with your situation. Best of luck to you. (Alec Markov)

          • Sylvia Sweet

            MY SON HAD THIS DISEASE, I think he had had it about 4or5 year when the dr. told him, he was lucky enough to get help with getting one of the newer medicines, he took that for about 6 weeks, he never had any real side effects with the medicine he took but now now he is cured of that, his 3 or 6 months after the medicine checkup, showed nothing in his blood work. I was so worried he could not take the medicine, with all the side effects I would read about, he did fine through it.I am so thankful and so is he that he is cured of that stuff, he feels better after getting rid of that

          • Dee

            Thank you Alex, I have read that the CDC stated that up to 75% of people infected are not aware they have it. It will become an epidemic in the next 10 years per Dr Dietrich, a specialist in HCV at Mt Sinai.

        • Dee

          This is a very sensitive subject. There are many Vietnam veterans who have it through no fault of their own. I myself got it from a gama globulin shot in the 70’s. You should look up Vietnam vets and hep c to find all the people who got it during inoculations before serving. Back when we were young there were no tests, or precautions taken with blood products, to stop this horrible virus. Like Alec, I did not know for 30 years that I had contracted it. They call it the shadow disease.
          There are papers out there that say HCV has been around for 100’s of years. The virus can live for up to 6 weeks outside of the body. There are many who have no idea how they got it. Thank you, Dee

      • Jeff

        My mother, who was a tea totaler, contracted HCV in the 60’s
        from a blood transfusion during a surgery. It degenerated to cirrhosis and
        finally liver cancer and death. I
        contracted it from IV drug use in the 60’s and was finally cured in 2013 after
        a 2002 failed attempt. Both treatments,
        for me, were HELL
        amplified. The next year they came out with the 90 to 99% success rate
        medications and my brother and two friends were cured with NO HELLISH SIDE EFFECTS and a much shortened treatment time.

        Way too late for my poor mother who was a hard working
        Jamaican woman who successfully raised her family and didn’t even drink, forget
        about drugs.

      • Nancy

        I acquired it at age 9 through a blood transfusion, but didn’t know I still had it til it was discovered 60 years later. The stigma was VERY bad – my friends were afraid of me, my husband was worried, and life was pretty crummy for awhile. I was afraid I was going to die of it because there was no cure. Then Harvoni came along. Too expensive for me — insurance refused to pay — but eventually helped pay for it — and 18 months later, I’m apparently cured. Grateful to be alive, and happy to see this article that finally sets the record straight. I didn’t indulge in “risky behaviors” and didn’t deserve to get it any more than anybody else did. I was a child — in the wrong hospital at the wrong time. I agree that Mr. Pieper is ignorant. He is also a selfish, self serving person.

        • John

          Is it so shameful to have a history of IDU ?
          Does it really matter ???

      • Lou

        Ditto to what Alec Markov said. Blood transfusion 1982. No doubt. In hindsight I was sick from then on but just thought I was an exhausted new mother !
        I remember Drs using glass syringes. It’s something else to consider for allot of people who can’t pin point date of infection.

      • John

        The utter shame … being” smeared ” an ex IDU !!!

        • Alec Markov

          I do not know what this means and perhaps ex IDU….its sounds insulting, although I don’t know to what it refers. Can you clarify this for me? Alec Markov

    • Marc

      This makes a kind of sense. In 1970 I was inoculated, with hundreds of other guys in a line, in each shoulder, with an air gun thing. At no time was there any cleaning done between shots. That may have been the way hundreds of people got it, that day.

  • Kevin Lacostelo

    This study makes no mention of military immunization methods which included “jet injectors” used well into the 80’s. Although there were no needles used, there was bleeding and subsequent skin penetration without antiseptic wipes or sterilization. The study also fails to mention specifically common dental procedures and the hand-eye-inhalation risks before latex gloves, face masks and eye protection were adopted as routine safety equipment.

    • Dee

      The govt will never admit any wrong doing

  • Mazhar Mehdi

    My PCR is negative, Please any advise for me,

  • Dee

    Really good article, thank you!

  • Dinoguy2u

    If this isn’t an ideal conspiracy theory subject, there never was one! Social Security broke, baby boomers now collecting what borrowed money there is left. Hmmm.

    • Sylvia Sweet

      The government has spent a lot of the S>S. money and are not replacing it. That is what has happened to a lot of the S.S. money, They government needs not spend money that doesn’t belong to them, but those freaks don’t care whose money the spend, as long as the can spend it

  • Deborah Boutland

    My Grandmother had Hep C I just found out. She died at 90 in 2008.She lived in the North of England, during the war.I find this ironic as my Dad threw me out when I told him I was hcv positive. Meanwhile, the whole time, his mother had it and was unaware.

  • Hazel Heal

    Re stigma- everyone caught it by accident. I don’t choose to be above, or below, anyone for how I got it. People ski, climb mountains, ride motorbikes- whatever- people take well known risks and we don’t judge, and happily pay for their treatment. But the most important message missing from here is- there is a cure, priced out of reach of the 2 million who have died in 2 years, that could have been saved, but for extreme, radical greed. The response is buyers clubs of generic hep c medication, saved my life and please this needs sharing, is suppressed esp in the US. I used Fixhepc, there are others, look up famous humanitarian Greg Jefferys, or me or ask. I don’t work for anyone, I just survived, learned, sharing. Fraction of price, safe and legal. Identical medication in a different box.

  • Debsrus

    I don’t think Mr Pieper said what he did to make people angry. I think he is probably part of the younger group of baby boomers who did experiment as was mentioned in the article. I think you miss his point because I am sure the younger group of people were children as well when they decided to do something that a mature person would know is just too risky.

  • BabyBoomer2

    When I was young (50s, 60s), every Dentist had several hypodermic syringes with the needles attached, soaking in a jar of blue fluid on a shelf, for all to see. Re-using needles was commonplace back then.