Fighting Hepatitis C Before It Gets To You (or Surprises You)

By John Lavitt 02/13/14

Once thought a disease of drug addicts—and notable in the recent death of Lou Reed—the CDC wants tens of millions tested as possible carriers. The Fix's guide to everything you need to know about hepatitis C, and its treatments.


The death from liver cancer of Lou Reed last October helped raise awareness of the devastating toll being taken by hepatitis C in the United States. Following is a guide to the evolution of the illness and its treatment. Although HCV now kills more Americans than HIV, the hepatitis C virus is far from a death sentence if diagnosed early.

The Silent Epidemic

According to the Center for Disease Control and Prevention (CDC), approximately 3.2 million Americans are infected with the hepatitis C virus. "One of every 33 baby boomers are living with hepatitis C infection," says Dr. John Ward, the CDC's hepatitis chief. "Most people will be surprised (when they find out), because it's a silent epidemic." 

Since over half of those infected are unaware they have hepatitis C, the infection rates could be significantly higher given the 20 to 30 year period the virus can remain in the human body, going unnoticed, but still causing damage. This is why such a real need exists for mass testing of the American public. 

A major step forward was taken in June of 2013 when the United State Preventative Services Task Force recommended every baby boomer born between 1945 and 1965 get tested for HCV. Tied to insurance coverage and respected by the medical community, this recommendation superseded the previous recommendation to have all baby boomers tested by the CDC in May of 2012 that was largely ignored.

The HCV Advocate

If you need quality information about hepatitis C, the best source for basic fact sheets and unbiased information is the HCV Advocate, a website founded by Alan Franciscus. Alan has been conducting hepatitis C training sessions for healthcare professionals across the United States since the 1990s. His groundbreaking work to reduce the stigma of the disease and to focus on the treatment has helped shift the national conversation. Although the HCV Advocate can be a bit overwhelming in terms of the amount of information provided—over 200 fact sheets about every aspect of hepatitis C—just use the search engine on the site to ask a specific question.

The medical community has HCV up against a wall and squarely in their sights.

Hepatitis C is transmitted by blood-to-blood contact and is the most common blood-borne infection in the United States. As a virus that lives in the human body, hepatitis C replicates itself by infecting liver cells. After the initial infection of 6 months, 55 to 85% of people develop chronic or life-long infection. Chronic HCV infection leads to inflammation, fibrosis (light to severe scarring) and cirrhosis (severe extensive scarring). If treatment is put off for too long, the infection can lead to liver cancer, liver failure, and death. 

Lou Reed’s Fatal Progression

Such a progression is what led to the death of Lou Reed. As his liver gave way to the virus, the singer was forced to undergo what he hoped would be a life-sustaining liver transplant in May of 2013. At the time, he acknowledged, “I am a triumph of modern medicine, physics and chemistry.” After Reed was “instantly regaining his health and energy”, there was a drastic turn for the worst. The transplant failed, and he died in the arms of his wife, Laurie Anderson. 

Anderson expressed the essence of her husband: “He lived for beauty. . . Lou knew what he was doing and what he was going for. His incredible complexity and his anger were part of his beauty.” The challenge is that behind this incredible complexity and anger were countless years of hard living and injection drug use. It was the archetypal rock ‘n’ roll lifestyle—his walk on the wild side—that led directly to the hepatitis C infection that ended his life. 

Understanding Hepatitis C Transmission

The number one transmission rate for HCV by far is injection drug use. This fact has led to a powerful stigma being placed on the virus. The history of hepatitis C in the United States is a history of shame and denial. The only way the virus can be defeated is by removing such stigma and focusing on treatment and prevention.

Injection drug use is not the only way in which hepatitis C can be transmitted. Non-injection drug paraphernalia such as straws and pipes are potential sources of transmission. Given the huge number of baby boomers with the virus, many of them were infected through blood transfusions. Widespread testing of the blood supply only began in 1992. As a result, many people were infected unknowingly during medical procedures. 

Although uncommon, sexual transmission is a possibility if blood has been exchanged. Another form of transmission is through tattoo and piercing shops that fail to follow proper safety precautions. Amateur tattooing and piercings present an even greater risk. In rare cases, hepatitis C can be transmitted from a mother to a child.

If you are at risk for hepatitis C, your best bet is to get a blood test and find out. Most likely, you will be fine. If you are not, you are lucky enough to have been diagnosed at the best point possible in the history of the disease. In contrast to the side effect treatment horror stories and the low percentage cure rates of the past, the medical community has HCV up against a wall and squarely in their sights. Unlike Lou Reed, you have an amazing chance of being cured of the virus and successfully moving on with the rest of your life.

Who Should be Tested

To be perfectly clear, the following people should be routinely tested for hepatitis C:

  • Anyone who ever—even if only one time—injected illegal drugs.
  • Anyone who received blood products prior to 1987, including clotting factor concentrates produced before 1987.
  • Anyone who had sexual contact with a high risk individual that possibly involved an exchange of blood.
  • Anyone who received a blood transfusion or an organ transplant before July 1992.
  • Anyone who received an amateur tattoo or piercing or who was tattooed or pierced in a shop lacking proper safety precautions.
  • Any health care, emergency medical or public safety workers who received an accidental needle stick in their line of work.
  • Anyone born to HCV-positive mothers.

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Growing up in Manhattan as a stutterer, John Lavitt discovered that writing was the best way to express himself when the words would not come. After graduating with honors from Brown University, he lived on the Greek island of Patmos, studying with his mentor, the late American poet Robert Lax. As a writer, John’s published work includes three articles in Chicken Soup For The Soul volumes and poems in multiple poetry journals and compilations. Active in recovery, John has been the Treatment Professional News Editor for The Fix. Since 2015, he has published over 500 articles on the addiction and recovery news website. Today, he lives in Los Angeles, trying his best to be happy and creative. Find John on Facebook, Twitter, and LinkedIn.