Friday, February 22, 2013

Hepatitis C: Would You Get Tested?

Painting By Sylvia Sleigh
© Estate of Sylvia Sleigh
Would You Get Tested?

Last summer when the CDC released the recommendation that all baby boomers should be tested one time for hepatitis C, I felt a rush of excitement, finally HCV awareness had a strong foothold, the word was out.

Recently the Canadian Liver Foundation (CLF) joined in releasing this announcement:

The CLF is urging general practitioners (GPs) to immediately begin recommending a one-time blood test for all adults born between 1945 and 1975, extending the CDC's recommendation for testing beyond the boomer generation to those born between 1945 and 1975, taking into account immigration from countries where hepatitis C is more common. 

My Test
The first time this baby boomer heard about hepatitis C was in 1999. The story goes like this, my children were in bed for the night while I watched a news program featuring Diana Ellen Judd discussing her hepatitis C diagnosis, better known as Naomi Judd. The singer was diagnosed eight years earlier, which eventually led to her early retirement from music.

Naomi went into detail about her symptoms, for me, the fatigue struck home. I wondered, could I have hepatitis C? Each morning was unbearable, I woke feeling as if I never slept. The risk factors went through my mind, I knew I had to get tested.
The Results

The next day at 9:00am, I called my general practitioner and made an appointment to get tested, four long days later the results were in, I tested positive. More tests followed, but the result was the same, I was a mother of three, divorced with a business to run, and faced with a serious disease. I was horrified - I had hepatitis C.

The Cure
In 2000 I entered into a clinical trial, fought with pure gusto to eradicate the virus and won. In those early days we didn't know that much about the virus, no routine testing, no warning. In the medical community the perception was that the virus wasn't all that serious - the majority of people infected either continued on with their life, or were unable to successfully treat the virus.
Today, sadly, some of those brave people make up the deadly HCV statistics reported by the CDC, quoted by journalist, and published in medical journals or presented at conferences. 
The Statistics - Disease Progression
Medscape reported: Out of 100 people that contract the infection, 75–85 people will develop chronic infection, 60–70 people will develop chronic liver disease, five to 20 people will develop cirrhosis over the course of their chronic infection and one to five people will die of complications including hepatocellular carcinoma (HCC).
Baby Boomers
Finally, the staggering statistic was in print, validated and unveiled for all to see:

One in 30 baby boomers – the generation born from 1945 through 1965 – has been infected with hepatitis C - and 75 percent don't know it - yet.

The CDC Recommendation - The Controversy

What followed was a summer focused on HCV awareness, the media coverage was exceptional, although, like all good things that must come to an end, the controversy did just that.

In November the United States Preventative Services Task Force (USPSTF) issued HCV draft guidelines, but they were a bit different than the CDC's. The guideline recommended screening only for those who are at high risk for hepatitis C, which included people who used IV drugs, or needles and received blood transfusions prior to 1992. Unlike the CDC, no mandatory screening for the cohort of people born during 1945-1965 was recommended. Background information is available online at The National Viral Hepatitis Roundtable

My Heart Belongs To Baby Boomers

As the season changed from summer to fall and eventually to winter, the magnitude of the reality that one in 30 baby boomers are unaware they are infected - remained deeply rooted in my heart.

I soon found myself with a new quest, maybe I could find out if the  CDC's new recommendation had an impact on baby boomers?  Yep, I'd ask 30 baby boomers if they heard about the new guidelines, follow that up with one invasive question - Have you considered getting tested? More to follow.........
So what is hepatitis C?

Hepatitis C is a virus, or infection, that causes liver disease and inflammation of the liver.

"Hepatitis" means inflammation of the liver and also refers to a group of viral infections that affect the liver.

Viral hepatitis primarily is caused by three unrelated viruses — hepatitis A, B and C viruses. All attack the liver, but hepatitis B and hepatitis C are largely responsible for an increasing number of liver cancer deaths.

There are effective vaccines for hepatitis A and hepatitis B, but not for hepatitis C.

HCV Liver Cancer and Liver Transplantation

According to the December issue of Liver Transplantation, increased demand for transplantation is driven by the development of liver cancer in baby boomers with HCV, but that the demand may decrease as patients born in this time period continue to grow older. Further evidence implicates HCV as the primary risk factor for developing HCC in up to 47% of cases of patients with HCC.

The HCV Epidemic

The global hepatitis C epidemic is estimated to include 130–170 million people worldwide, in the United States an estimated 2.7–3.9 million people are living with the virus, more than 2 million of these people are baby boomers, with around 75 percent unaware they are infected - because they haven't been tested. In a year, 80,000 new infections occur and close to 15,000 Americans will die from the disease.

The Quest

Would You Get Tested?

On a cold winter morning I set out to implement my impromptu poll.

As I drove around searching for the perfect location, three huge red letters appeared directly to my left - CVS, I pulled into my local pharmacy - my quest had begun.

With some serious nervous energy - only comparable to administering my own first shot of interferon, I boldly went where no under qualified blogger should go, into the world of in your face "TMZ" reporting. Oh man.
I spotted my first baby boomer, a middle aged woman rummaging through a slew of various - as seen on TV products. I circled around, waiting for the opportune moment to make my approach. In a spilt second her selection slowly slipped from her grasp landing at my feet, as I bent over to retrieve the Forever Comfy Cushion, I quickly moved in for the interview.
With a warm smile, I handed over the carefully selected purchase and began. " Hello, I'm a blogger working on an article for hepatitis C and wondered if you would be willing to answer a few questions for me" she agreed.
I began by asking if she was aware that The Centers for Disease Control is urging every single person between the ages of 47 and 67 – not just those at risk- to be tested one time for hepatitis C.


Bravely, continuing on, I ran through a few risk factors including the following but not limited to: recreational intravenous drug use, blood clotting products before 1987, blood transfusion and organ transplant before 1992, adding donors during this time were not screened for hepatitis C. Once convinced my explanation was clearly understood, I continued on to the big question. "Have you considered being tested for hepatitis C?"

She was not amused, the interview was over.
Fade To Black
After the next 19 people shifted uncomfortably in my presence, looking over their shoulder as if the "CDC God' was going to appear and haul them off to infectious disease jail, they answered the question.

Number one final answer... ding, ding, ding..... "Why should I get tested, I never used those kind of drugs." or "Any drugs back then." Ugh.
The stigma lives, how sad, and how very uninformed my unwilling baby boomers were. Unless all twenty baby boomers had no risk factors. Let's consider the small number, I mean 20 people, but then I thought to myself maybe the setting was wrong, or the timing, or my approach.

New Plan

I decided to go deep, the next 10 people were told that I had hepatitis C, and after treating the disease over a decade ago, I remain virus free.

On my second attempt, one person did express the need to get tested, another person said her brother was diagnosed last month, she was also considering testing.


Out of thirty people, two felt at risk and considered testing.

Fortunately, the release of CDC's recommendation will help change the sigma attached to this disease. Education, talking about the unmentionable and spreading the word are all key elements in raising awareness which will help people address any risk they silently harbor and encourage testing.

Not Knowing

According to an article published in the July/August issue of ACP Internist,  Dr. John G. Bartlett at Johns Hopkins University in Baltimore noted that even with improved therapies to treat HCV, "70% of the estimated 3.1 million Americans with HCV are never offered treatment because they don't know they are infected.  The article reported; About 75% of HCV-related deaths between 1999 and 2007 occurred among people 45 to 64 years old, and without a more aggressive effort to identify new cases, the Centers for Disease Control and Prevention (CDC) expects the number of deaths from HCV to double and the public health burden to increase over the next two decades." 

45% Of People Infected With HCV Reported No Known Exposure Risk

Lets look at the first twenty people in my homemade poll that assumed the majority of people infected with HCV contracted the virus only through IV drug use:
According to the CDC's: August 17, 2012 Morbidity and Mortality Weekly Report: 45%  of people infected with HCV reported no known exposure risk .........
In a recent analysis of data from a national health survey, 55% of persons ever infected with HCV reported an exposure risk of either (IV drug use or blood transfusion before July 1992), and the remaining 45% reported no known exposure risk (CDC, unpublished data, 2012).
Other potential exposures include ever having received chronic hemodialysis, being born to an HCV-infected mother, intranasal drug use, acquiring a tattoo in an unregulated establishment, being incarcerated, being stuck by a needle (e.g., in health care, emergency medical, home, or public safety settings) and receiving invasive health-care procedures (i.e., those involving a percutaneous exposure, such as surgery before implementation of universal precautions).

Other risk factors before 1990/1992 include Vietnam veterans exposed to blood/body fluid, or blood exposure through the multidose vaccination process. As mentioned above in the health care field, physicians, lab workers, and nurses were at risk for accidental needle sticks or poor safety conditions. Dr. Douglas Dieterich, a national expert in hepatitis C, contracted the virus in 1977 through an accidental needle stick. In this video the doctor discusses hepatitis C, and the risk of transmission in a health care setting.

Life As A Baby Boomer

Like many baby boomers, I am sandwiched between raising my children and caring for my elderly parent. I quickly realized how fortunate I am to be healthy and living without the virus. My mother requires twenty four hour care, my adult children need me more now then they ever have. I won't bore readers with the love I have for my little soft and sweet grandchildren. I'm sure you all get that, the grandkids, wow.

Get Tested

Are you at risk? Get tested, consider it a routine blood test, your physician certainly does.

Quote It

Spielberg's Abraham Lincoln once said - "The best thing about the future is that it comes one day at a time."

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