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 Tied to insurance coverage and respected by the medical community, this recommendation superseded the previous recommendation to have all baby boomers tested by the CDC in May of 2012 that was largely ignored.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.

What To Do Once Diagnosed

If you have been diagnosed positive, the first thing to do is find out your genotype. HCV genotype is a strain of the hepatitis C virus based on the genetic material of the virus. The vast majority of people in the United States are genotype 1 that has become known as the American genotype. Previously the most difficult genotype to treat, the new drugs introduced in the 21st century have radically changed this outcome.

After you find out your genotype, you need to find out your viral load to know how much of the virus is actually in your body. Listen to your medical provider and follow his or her guidance, but also make sure they have experience with HCV. If you are having potential HCV symptoms like chronic fatigue, persistent fevers, headaches and body aches, they often can be due to other causes. As a result, these symptoms also can easily be ignored or misdiagnosed.

More severe advanced symptoms are easier to recognize like the yellowing of the skin and/or the whites of the eyes. This is known as jaundice. Regardless of whether the initial symptoms are the result of HCV or not, steps should be taken to find out the actual health of your liver. 

In the past, you needed a liver biopsy to know what was the condition of your liver. A lot worse than it sounds, a liver biopsy is an outpatient procedure that basically means a shitty afternoon. The moment when a big needle is plunged into your stomach does suck; some people say that it’s like being kicked by a horse. But the pain passes quickly. 

The New Fibroscan Technology

If you have just been diagnosed, you are lucky enough to most likely not need such an invasive procedure. The new Fibroscan technology is almost as effective as a traditional liver biopsy for analyzing the condition of your liver. By getting a Fibroscan, you give your doctor the ability to determine with precision whether or not you need treatment. 

In light of all the new HCV drugs presently being tested and soon to be approved, the ideal option is to put off treatment if you can safely wait. If you can’t wait, the current treatment options are still a thousand times better than what was available in the recent past, with higher cure rates and remarkably reduced side effects.

At the end of the six month trial, the results were revealed, and I was cured of the hepatitis C virus.

Before we discuss the current options available, let’s do a quick review of the legacy of hepatitis C treatment over the past 20 years. By understanding the changes that have taken place during this period, you will be amazed at how truly lucky you are today.

Hepatitis C Treatment 20 Years Ago

Just under 20 years ago when Alan Franciscus of the HCV Advocate was first diagnosed, the only real treatment option was a six month regimen of three injections per week of standard Interferon. Interferon is comprised of a series of proteins that allow for communication between cells that trigger the body’s protective defenses. In the case of HCV, it jacks up the human immune system to fight the virus. 

Interferon, however, has tough side effects and is the main element behind the terrible reputation of HCV treatment options. When he began treatment, Alan explained how “nobody told me what to expect and the side effects were overwhelming. They included chills, shakes, fever, and pretty severe depression and anxiety.”

When he learned the cure rate was only 9% for the American genotype that he had, Alan became even more depressed. Rather than give in to the darkness, he chose to educate himself about hepatitis C. Alan was so frustrated by how little his medical providers in San Francisco actually knew. He chose to embrace a journey that led to the “HCV Advocate” and his work as the Executive Director of the Hepatitis C Support Project. 

Hepatitis C Treatment 10 Years Ago

Alan Franciscus describes how "one of the benefits of surviving the first round of treatment was I realized I could do just about anything if I applied myself.” Not being cured, Alan decided to try the newest form of treatment in 1998—the combination of pegylated interferon and ribavirin. 

Polyethylene glycol (PEG) is a compound that allows interferon to last longer in the human body. Ribavirin is a drug that inhibits the replication of the virus. After an incredible 70-week course of treatment on this drug combination, Alan Franciscus was finally cured. Once again, the side effects were awful.

When you research HCV treatment, you need to understand the legacy of such side effects. Beyond quality sites like the HCV Advocate, the CDC or the Mayo Clinic, the Internet is overflowing with outdated HCV horror stories. There are many negative sites and blogs by angry people who went into treatment in the past, experienced horrible side effects and failed to be cured. The extreme expression of such opinionated grudges pollutes the stream of reliable HCV information on the Internet. This is a real danger.

Hepatitis C Treatment 3 Years Ago

The reason the angry voices about hepatitis C treatment are such a danger is because three years ago everything began to change. A big step was when the pharmaceutical companies shifted their HIV research teams to HCV. The belief was that protease inhibitors, which have proven so effective in HIV maintenance drugs, could be created to help fight HCV. In 2011, the first two protease inhibitors to treat HCV—Merck’s Victrelis (boceprevir) and Vertex’s Incivek (telaprevir)— were approved by the FDA. 

The protease inhibitors changed the landscape of HCV treatment, but the first ones approved were like any other first generation drugs. They included a bevy of additional side effects, and they had to be taken in conjunction with the pegylated interferon and the ribavirin. The way a protease inhibitor works is that it inhibits the production of a protein in the human body which the hepatitis C virus needs to replicate itself. Although the side effects were tough to bear, the cure rates dramatically increased, particularly for the American genotypes.

I know this from first-hand experience because in September of 2011, I began a clinical trial of a new protease inhibitor in combination with once a week injections of pegylated interferon and daily doses of ribavirin. Experiencing brutal side effects including a rash across my entire body that would not stop itching 24-7 for several months, somehow I hung in there and survived. 

At the end of the six month trial, the results were revealed, and I was cured of the hepatitis C virus. Since I have the American genotype, the protease inhibitors opened the doors to a cure that was three times more likely to happen than before. Personally, I would take these odds to Vegas. Even more hopeful, today’s generation of incredible new HCV drugs have taken interferon out of the equation while dramatically reducing the side effects and continuing to improve cure rates. This is welcome news to those currently infected.

Hepatitis C Treatment Today

In 2014, if you made the smart choice of being tested for hepatitis C and found out the disturbing news that you have the virus, you can be hopeful about your options. Your chances of being cured without going through extensive side effects is better than ever and continuing to improve.

Difficulties still abound because of the greed of the pharmaceutical industry. There is a huge payer revolt currently happening in response to the newly FDA-approved $1000 a pill HCV drug Sovaldi from Gilead Sciences. With the entire bill for the 12-week treatment program coming out to $84,000, the “Gilead=Greed” signs can be seen in protests across the country. 

As opposed to being a protease inhibitor, Sofosbuvir (the actual name of the drug—Sovaldi is a brand name) is a polymerase inhibitor that impedes the replication of the virus. Discovered by Pharmasset, a small pharmaceutical company that was purchased by Gilead Sciences for $11 billion dollars in 2011, the cure rates have skyrocketed to above 90% for newly treated patients.

Being the first of the latest round of HCV drugs on the market with high cure rates and shorter treatment periods (12 weeks as opposed to 24 or 48 weeks), Gilead Sciences is taking advantage of the marketplace and desperately trying to recoup their investment. The pharmaceutical companies did not realize how well the vast majority of their new HCV drugs would work. Since none of them appear to control the gold standard of treatment, they all fear the loss of their huge investments in research and development.

“Take Me Out Into The Light”

According to Laurie Anderson, Lou Reed’s final words before he died from HCV-related causes were, “Take me out into the light!” The beautiful light of new HCV drugs could very well be a reality in the near future. We hope for the promotion of universal testing and a reduction of the stigma of the disease.

Get tested before it’s too late. If you have tested positive for the hepatitis C virus, just hang in there because a healthy future is on the horizon.

John Lavitt is a regular contributor to The Fix. He has been the Patient Advocate for Hepatitis Connect since being cured of HCV in a clinical trial in 2012.

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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.