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

Fighting Hepatitis C Before It Gets To You (or Surprises You) - Page 2

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.


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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.