Hepatitis C and Social Stigma: Challenges Beyond the Illness

Did you know that Hepatitis C often causes a chronic viral infection called HVC?  Perhaps you are unaware that and it is the number 1 cause of most liver transplants?  About 150 million people around the world are living with chronic HCV, but many of them deliberately avoid either testing or treatment.  And yet, ironically, the treatments are successful with 50-90 % of those who elect treatment.  Read on and find out why…

October Awareness for Hepatitis C, and End-Stage Liver Disease

Welcome to the second blog of our series of articles linked with this month’s Liver Disease Awareness Campaign.  In our previous blog, DDC Orlando (Digestive Disease Consultants of Orlando,) began a series of articles linked with this month’s Liver Disease Awareness Campaign.  We genuinely hope you read and review the first one for HCV basics.

As stated previously, gastroenterologists, specialists and healthcare professionals of DDC Orlando, are very proud to share the month of October with the famous cause of Breast Cancer Awareness.

In fact, the current epidemic of liver disease reminds us somewhat of a time 25 years ago.  In those days, breast cancer was a little known, quiet disease women only whispered about.  The pink ribbons changed all that.  Public awareness, research, advocation, donation, and celebration has radically changed that disease.  Moreover, those pink ribbons changed people’s perception of breast cancer as well as their sensitivity to it.

The Hepatitis C Cause:  Worthy of its own Ribbons

Never underestimate the power of the pink ribbons.  As more people advocated research and supported patients’ plights, we began to have better Breast Cancer diagnostic tools, therapies and more survivors.  With public support, women became aware of the importance of speaking out, and of early detection.  And the Breast Cancer Cure rates rose.

DDC Orlando is hoping for the same results with the green ribbons of Liver Disease Awareness.

Hepatitis C:  Another Whispered Disease Becomes Epidemic

As it once was with breast cancer, DDC Orlando health professionals believe public awareness and education is key to wiping out the current epidemic of Hepatitis C.  And getting tested for Hepatitis C is essential, because left untreated it can go away or become HCV, which often develops into cirrhosis of the liver.  Statistics at Healthline and the CDC explain the connection between Hepatitis C and Liver Disease in percentages:

60–70 % of the diagnosed patients will develop chronic liver disease.

5–20 % of the patients will develop cirrhosis of the liver, although it sometimes takes 20–30 years.

1–5 % will die from cirrhosis of the liver or liver cancer.

Hepatitis C Victims:  Are They Hiding from the Stigma?

Moreover, experts report that there are at least as many Hepatitis C patients evading testing as there are taking it.  The Digestive Disease Consultants, Orlando, are deeply committed to improving these percentages.

Defeating the epidemic of Hepatitis C will be very difficult to do if we cannot get society to look beyond the social stigma.  You see, a certain stigma is associated with many of the behaviors and lifestyles conducive to this infection, its chronic form, and its end-stage liver disease.

The Hepatitis C Mystery in the Green Ribbons:  The Stigma

In the spotlight for this week’s blog, our green ribbons for Liver Disease awareness are an appeal to the public for support in our efforts to engage people with Hep C and HCV to accept testing, care and treatment.

We hereby blame lack of education and awareness of Hepatitis C for the 13 million estimated cases in the US today.  Likewise, with 150 million cases of HCV in the world, why are so many terribly ill patients avoiding testing, treatment and cure?  Why are they opting to suffer, and even die, in silence?

The clue to the mystery of why so many patients avoid or delay treatment might surface if we examine some of the high-risk groups who contract the Hepatitis C virus.  We introduced them in our previous blog, but let’s take another look, a deeper look.

List # 1:  People At High Risk for Hepatitis C, HCV and Liver Disease:

You are at risk for Hepatitis C and HCV if…

• 

  DDC Orlando brings care and compassion to Hepatitis C and liver disease patients .

  An infected person shared needles with you to inject drugs…

• You shared straws to inhale drugs…
• Your tattoo artist created your tattoos or piercings in an unclean environment, with unsterile equipment…
• Sometimes HCV is contracted through unprotected sex with multiple partners…
• It can be caused by having sex with a person who has a sexually transmitted disease.
• HIV patients often contract HCV.

The Social Stigma of Hepatitis C and Liver Diseases

You will notice undoubtedly that all of the above are associated with behaviors the general public might consider risky, immoral, illegal or sinful.  When we speak of a “stigma” associated with a disease or behavior, we are referring to the concept of a discredited identity.

A sort of side-ways, sub-conscious logic creates a stigma against some very sick patients.  The fallacy says:

1. Society disapproves the above-listed behaviors.
2. If you have Hep-C, you must have violated some of the rules of polite society.
3. Then society judges you, weighs your value, finds you wanting, and feels validated by disapproving of you.

October Awareness of the Stigma for Hepatitis C and Liver Disease

So, patients who have Hep C, HCV or liver disease, often find themselves stigmatized.  Society makes the patient feel excluded, rejected, blamed and devalued.  The patient experiences shame, guilt, and depression, intensifying his or her illness.

“The stigmatizing process is inherently social in that a stigmatized identity is one that is understood to have breached the rule of society.  Stigmatizing, and therefore devaluing, a person or act is the means by which the social body controls and contains threats against its order and values.”

Attaching a stigma to a medical condition happens repeatedly.  Moreover, it sad to say, stigma even occurs among some healthcare professionals.  And it pervades entire health facilities.  So, it is really no wonder that many patients distrust the health-care setting.  And that is why we are flying bright green ribbons of awareness this month.

But wait! —There are more ways to contract Hep C. and HCV than listed above!  For the sake of awareness and education, let’s look our second high-risk list:

List # 2:  People At High Risk for Hepatitis C and HCV:

• Perhaps your job as a healthcare worker caused you to become pierced with infected needles or blood.
• A blood transfusion or organ transplant might have saved your life before July, 1992.
• Maybe you were given a blood product for clotting problems made before 1987
• If you were on dialysis for a long period of time because your kidneys weren’t working, you could contract HCV.
• Likewise, you might have contracted the disease at birth if your mom had Hepatitis C.

Hepatitis C:  The Good, the Bad and the Viral

Many members of society would quickly perceive the above risks as more innocent than the risks on our first list.  However, here is the tragedy and the mystery: Expert studies reveal that it does not matter what condition on either list caused the patient’s case of Hepatitis C.  The patient is still stigmatized, blamed and socially shamed by the bad reputation of the disease.

The point is that medical professionals say that negative judgment is medically unwarranted.  However, the stigma wields such prejudiced social power that logic does not matter.

The Power of the Hepatitis C Stigma

The health-related stigma associated with Hepatitis C continues its blind and brutal existence.  Unfortunately, the stigma has a profound impact on social and health policy.

The experts have stated, “Stigma is an essential consideration in any examination of HCV.  The experience of stigma and discrimination has been a defining feature for those living with HCV…”  And they add it “is inextricably linked to its association with injection drug use”.  People are stigmatized because of both HCV (an infectious agent) and injection drug use (breaching social conventions).  Levels of stigma perceived by people who inject drugs (PWID) can persist even when drug use is reduced or ceased.”

As in the case of TB, VD, and HIV, “the stigmatized status of HCV has had an adverse impact on the prevention of its transmission; on treatment-seeking, uptake, and adherence; and on quality of life.” 

As we have mentioned previously, the fear of this judgment, condemnation and stigma prevents some patients from testing.  And that is how you end up with 350,000 to 500,00 deaths per year from a quiet epidemic in this world.

DDC Orlando has set a gold standard of non-judgmental care and compassion for Hepatitis C, HCV and Liver Diseases.  We are committed to defeating the stigma as well as the diseases through education, advocation and awareness.  Green is the color of hope.  Never underestimate the power of the green ribbons.