Hep Summer 2013 by Smart + Strong

A SMART+STRONG PUBLICATION SUMMER 2013 HEPMAG.COM

YOUR GUIDE TO HEPATITIS

Power to the People

Congressman Hank Johnson raises awareness of hepatitis C after his success with treatment.

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HEPMAG.COM Hep Blogs

Hepatitis 101 Find out what you need to know about hepatitis A, B and C. Learn the facts about transmission, testing and treatment as well as prevention.

Overheard in the Forums

An author and health educator gives her perspectives as a patient and as a nurse.

Devon Nicholson

A former WWE pro wrestler posts video updates of his treatment progress.

Karen Hoyt

A hepatitis C advocate shares lessons learned as she recovers from successful treatment.

Conference Updates Read the latest treatment news and highlights from conferences around the world including the 48th annual meeting of the European Association for the Study of the Liver (EASL) in Amsterdam.

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Lucinda K. Porter, RN

I am a 58-year-old male and was just diagnosed with HCV. My doctor is saying it’s OK to wait to do anything since my blood work is normal. I have not had the genome testing yet. I worked as an EMT in the ’80s and assume I was infected around this time.

Check out the Hep Forums, a round-the-clock discussion area for people who have questions about hepatitis and liver health. Scroll through recent posts or join the conversation yourself.

The Pipeline Report Read our exclusive report on the promising new data on forthcoming hepatitis C therapies. The newer drugs boast fewer side effects and higher cure rates.

How to Find Support Visit the Hep Health Services Directory, a comprehensive guide to hepatitis health care and services featuring thousands of organizations nationwide including drug treatment centers, clinics and hepatitis testing centers.

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Read the real-life stories of people living with hepatitis C at blogs.hepmag.com.

FROM THE EDITOR

KNOW YOUR STATUS

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CONTENTS 1 FROM THE EDITOR The future of hep C treatment looks promising 2 PROFILE Cured of hep C, Congressman Hank Johnson uses his voice to advocate for others 3 THE BASICS Info about hep C transmission and treatment (COVER) JONATHAN TIMMES; (GUTIERREZ) STEVE MORRISON

4 TREATMENT NEWS Better care equals better health • inadequate global response to viral hepatitis • hep C treatment can prevent cancer • some syringes may transmit HIV and hep C less than others • expect to see a peak in hep C cases and costs • even moderate drinking raises risk of death

More than 3 million people are living with hepatitis C in the United States—and most of them aren’t aware of their status. It can take years for symptoms to show. But even without symptoms, the virus is still doing damage to your liver. The disease is spread when blood with the hepatitis C virus (HCV) enters the body of someone who does not have it. The only way to know if you have hep C is to get tested. More than 75 percent of adults with HCV are baby boomers, which is why the Centers for Disease Control and Prevention now recommends getting tested if you were born between 1945 to 1965. That makes sense, because finding out your status is the only way you can be treated before it’s too late. African Americans have a significantly higher rate of chronic hep C compared with other ethnic groups. Some of the more common ways to contract HCV include sharing equipment for injecting drugs, getting a tattoo, experiencing a needlestick injury in a health care setting, having had a blood transfusion or organ transplant before 1992 and being born to a mother with HCV. Sexual transmission is rare, although gay men, especially those with HIV, may be at increased risk. A simple blood test is all it takes to find out. Go to page 3 for more about the basics of hep C transmission. Finding out if you have hep C is the first step. Once you’re aware of it, you can consider your options for treatment and the best timing for treatment. Turn to page 4 to read more about hep C treatment and visit hepmag.com for the latest treatment updates. No one wants to test positive for hep C, but a diagnosis isn’t the end. U.S. Representative Hank Johnson (D–Ga.) is living proof. Diagnosed with HCV in 1998, he kept his hep C status private through the years, including during his 2006 election to Congress. When asked by a reporter during his 2010 congressional reelection campaign to address rumors that he was dying, Johnson disclosed he was undergoing hep C treatment. Going through treatment isn’t easy, but treatment is getting better all the time. Johnson was cured of his HCV, won another term and has become a vocal advocate for people with hepatitis. Read more about him on page 2. Determining the best timing for treatment for HCV is something to be discussed with your doctor. For some people, getting treatment as soon as possible is the best decision. For others, it may be OK to wait until newer therapies with shorter durations of treatment and lessened side effects are available. Everybody’s experience is different— and you can read about different people’s experiences at blogs.hepmag.com. The good news is the future of hep C treatment looks promising. Whether you decide to start treatment now or wait for more options, it’s a hopeful time for people with hepatitis. So talk with your doctor and get tested for HCV. You can be cured, but you first have to know your status.

Published by Smart + Strong, publishers of Hep and Hepmag.com. Copyright © 2013 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored or transmitted in any form by any means, electronic, mechanical, photocopying, recording or otherwise, without the written permission of the publisher. Send feedback to HEP c/o Smart + Strong, 462 Seventh Avenue, 19th Floor, New York, NY 10018. Tel: 212.242.2163.

ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF HEPMAG.COM FACEBOOK.COM/HEPMAG TWITTER.COM/HEPATITISMAG

Editor-in-Chief: Oriol R. Gutierrez Jr. Managing Editor: Jennifer Morton Writer: Benjamin Ryan Copy Editor: Trenton Straube Art Director: Mark Robinson Production Manager: Michael Halliday

SMART + STRONG President: Ian E. Anderson EVP and Publisher: Megan Strub Integrated Advertising Coordinator: Jonathan Gaskell

hepmag.com SUMMER 2013 HEP 1

PROFILE

HANK JOHNSON FINDS HIS VOICE When describing his emotions over receiving a cure for hepatitis C in 2012, U.S. Representative Hank Johnson had this to say: “I could not express myself more than just a scream of delight.” The Democratic congressman, who represents DeKalb County in the eastern suburbs of Atlanta, and who describes himself as “a humane, compassionate progressive,” is now advocating for all Americans affected by viral hepatitis, ready to stand strong as a public face of the disease. Not so long ago, though, he was silent about his condition, which he discovered after visiting the doctor with complaints of chronic fatigue in 1998. He was elected to Congress in 2006 and, concerned about his political future, kept his hep C status secret. Unable to wait for newer, simplified therapies with fewer side effects, Johnson chose a lull between election cycles to undergo a third round of treatment after two failed attempts. Of the six months spent on therapy, he says, “I never felt worse in my life.” This coincided with the fight in Congress to pass the Affordable Care Act (ACA). Serving as a regional whip, he was a key player in mobilizing efforts to pass the landmark health care legislation. As he struggled with the treatment’s devastating side effects, he reminded himself of how fortunate he was to have excellent health insurance and was driven all the more to fight the good fight on behalf of the American people. “I did not want to be just one of the chosen few” with health coverage, he says. “I think everyone should have the ability to become healthier.”

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Meanwhile, his weakened physical condition and rapid weight loss, his tendency toward forgetfulness and inarticulate speech, and his increasing reluctance to make public appearances in his district were starting to raise questions. Eventually, these concerns threatened to derail his 2010 election campaign. When a reporter confronted him about rumors suggesting he was sick and dying, Johnson “had to decide whether to come out of the closet or not—to borrow a metaphor from my friends in the LGBT community. “Maybe I can be of service to remove the stigma of hepatitis C,” he decided, and came out loud and proud. In addition to receiving the moral support and love of his colleagues, he soared soundly into another term with 75 percent of the vote. He was not so lucky with his third round of treatment, however. So he then braved a fourth and final round and was pronounced cured in time for the 2012 election season. Johnson says his experience with hep C has taught him to be freer with himself and to accept his flaws and positive attributes alike. It’s also taught him to become less self-focused. “I became more concerned about other people,” he says, “and the fact that there are so many who will never know that they have hepatitis C until they’re getting ready to need a liver transplant, or they’re getting close to death from liver cancer.” Now, the man who was told he had 20 years to live after his initial diagnosis sees a radiant future before him. “I’m looking to live to be about 125.”

JONATHAN TIMMES

Cured of his hepatitis C, he now fights for Americans with viral hepatitis.

THE BASICS

HEP C 101 Hepatitis C is a virus that can result in serious liver damage, including cirrhosis (scarring of the liver), liver cancer and possibly death. The disease is the main cause of both liver cancer and liver transplants in the United States. There is no vaccine for the hep C virus (HCV), but there are treatments that can cure the virus in some people. HOW PREVALENT IS HEP C? According to the Centers for Disease Control and Prevention (CDC), an estimated 3.2 million Americans are living with hep C. Most don’t know they have it.

HOW IS IT TRANSMITTED? Hep C is primarily transmitted when one person’s infected blood enters the bloodstream of another. Routes of transmission include: ■ Sharing needles for injection drug use. ■ Blood transfusions and organ transplants before 1992. ■ Tattoos or piercings from unsterilized instruments. ■ Rarely, through outbreaks resulting from poor infection control in health care facilities.

IS IT TRANSMITTED SEXUALLY?

ASSOCIATED PRESS

Rarely. There is ongoing evidence, however, that men who have sex with men (MSM), especially those who are HIV positive and those who engage in unprotected sex with multiple partners, are at risk for sexual transmission of the virus.

HOW DO YOU KNOW IF YOU ARE INFECTED? The only way to know for certain if you have hepatitis C is through blood tests.

WHO SHOULD GET TESTED? ■

■

Baby boomers, born between 1945 and 1965 (this group has by far the largest prevalence of the virus). Those who received an organ transplant or blood transfusion before 1992. Anyone who has ever injected drugs, even once. People who are HIV positive or have had abnormal tests or liver disease.

WHAT HAPPENS AFTER HEP C INFECTION? About 15–25 percent of people will clear the virus on their own. The remaining 75–85 percent will develop what is known as chronic, or long-term, hep C infection. The virus has a very long incubation period, so people may live decades with no symptoms while the virus progressively damages the liver.

WHAT ARE THE SYMPTOMS? Once hep C has more seriously damaged the liver, symptoms may include fever, fatigue, loss of appetite, nausea, vomiting, abdominal pain, dark urine, grey-colored stools, joint pain and jaundice (the skin and whites of the eyes turn a yellow or pumpkin color).

HOW IS HEP C TREATED? Hep C is treated with direct-acting antivirals (DAAs). The current standard of therapy is a combination of pegylated interferon and ribavirin with one of two currently available protease inhibitors: Incivek (telaprevir) or Victrelis (boceprevir). Treatment lasts between 24 and 48 weeks. About 50 to 75 percent of people will achieve a cure, also known as a sustained virologic response (SVR).

ARE NEWER, IMPROVED DRUGS IN THE WORKS? Numerous hepatitis C drugs are currently in the pharmaceutical pipeline. Research has shown that these therapies may promise shorter treatment durations, fewer side effects, higher cure rates and simplified, interferon-free drug regimens. Interferon can cause difficult, flulike side effects. While there is never a guarantee that the U.S. Food and Drug Administration will approve any new drug, the outlook is promising that revolutionary new therapies may hit the market in the next year or two. Source: CDC

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TREATMENT NEWS

Better Care Translates to Better Health Outcomes Those who receive optimal pre-treatment care are much more likely to undergo and complete antiviral treatment for hep C, according to research published in the journal Clinical Gastroenterology and Hepatology. The study defined opt i mu m pr e treat ment care as having satisfied three main components: the doctors need to confirm a positive hep C test with a viral load test, perform a genotyping test, and refer someone with the virus to a specialist. The study’s lead author, Fasiha Kanwal,

MD, an associate professor in gastroenterology and hepatology at Baylor College of Medicine in Houston, says she hopes that electronic medical records may help improve care. “It could be just a simple reminder to check someone who has hepatitis C for viral load or genotype and see if the person is a candidate for further evaluation by a specialist,” she says. “Some of these things could be automated, and that takes some of the load off the providers. It might m a ke t he m mor e consistent.”

Treat Hep C, Prevent Cancer Hepatitis C treatment appears to cut in half the rates of liver cancer among those with fibrosis or cirrhosis (scarring of the liver), according to a Danish study. The analysis examined eight randomized controlled trials comparing antiviral therapy—interferon or pegylated-interferon as monotherapy or paired with ribavirin—to a placebo or no treatment. Those who responded well to treatment had an even greater likelihood of thwarting cancer. This is especially good news as today’s treatments are vastly more effective than those studied in these trials, with new drugs likely hitting the th market in the

A report from the Economist Intelligence Unit outlines the inadequate governmental response to the viral hepatitis epidemic around the globe and urges major action to address the escalating medical and economic impact of the virus. The report finds that as little as 10 percent of the estimated 150 million people living with hep C worldwide are currently receiving antiviral treatment. Urging more effective disease surveillance programs, the report found that 16 countries in the European Union have either poor or nonexistent data about the epidemic. In calling for greater public awareness about the virus, the report cites the findings of a European Liver Patients Association survey: Only one in five of those with either hep B or C had ever heard of each virus before their diagnosis. The report further calls for improved prevention efforts as well as progress in reaching out to those living with viral hepatitis and in getting them into treatment before they experience serious liver damage. Charles Gore, chief executive of the Hepatitis C Trust in London, says, “I’m appalled by how little attention is paid to viral hepatitis. It’s of the same magnitude as HIV, TB and malaria. And yet we’ve never had anywhere approaching the level of profile, awareness and resources that have been thrown at the other three communicable diseases.”

near future an and promising even higher cure cu rates. The outdat outdated nature of the treatments an analyzed, however, is a ma major limitation of the tria trial because current tre treatments all use pegyl pegylated-interferon ove over interferon, plu plus ribavirin, as a b backbone. Nina Kimer, M MD, of Copenhag gen University H Hospital Hvidovre in D Denmark, who is the le lead author of the study, says, s “Hopefully our results will speed the process of getting people into treatment. And also will show that interferon is not wasted, even if you don’t have a sustained virologic response.”

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(CLIPBOARD) DREAMSTIME.COM/ROBERTO1977; (GLOBE/BLOOD DROP) DREAMSTIME.COM/DABOOST

Woefully Inadequate Global Response to Viral Hepatitis

Some Syringes V May Transmit HIV and Hep C Less Than Others

(NEEDLE) DREAMSTIME.COM/PMAKIN; (DRINK) DREAMSTIME.COM/PUMBA1; (MONEY/PILL) DREAMSTIME.COM/SHAWN HEMPEL

Using syringes designed to have ve less “dead space”—meaning, they ey retain a smaller amount of fluid id after the plunger has been depressed—may help prevent HIV and hepatitis C transmission among mong injection drug users. Researchers hers published their analysis in thee International Journal of Drug Policy. cy. High dead-space syringes retain etain fluid in the tip of the syringe, hub ub of the needle and in the detachable able needle. Low dead-space syringes, s, on the other hand, do not have a detachachable needle, and after the plunger er is fully depressed they only retain fluid in the needle. On average, one millilillili-

ter low dead-space syringes retain only 2 microliters of fluid, compared with 84 microliters in high dead-space syringes. h Research has found that hep C survives only a day in a h low dead-space syringe, but for lo up to 60 days in a high deadu sspace syringe. The study’s lead author, William Zule, Dr.PH, a senior research A. Z analyst at RTI International in Reanal search Triangle Park, North Carosear lina, conducted previous research lina that found that nearly 20 percent injection drug users reported of in using a high dead-space syringe in usin past month. the p “Ideally we could phase out the “I manufacture of these high deadman space syringes and replace them spac with some type of low dead-space alternative,” he says. alter

Hep C–Related Costs to Peak at $9B in 2024

As the baby boomers age, the United States will see a peak and then significant tapering of hep C cases, liver disease and associated health care costs in the next two decades, according to a report published in the journal Hepatology. The study’s projections include:

■ The prevalence of people with cirrhosis will likely peak in 2015 with 626,500 cases.

■ The most common liver cancer will increase to 23,800 cases in 2018 and then decline.

■ If the number of people treated for hep C is doubled to 126,000 per year through 2030 and the average cure rate increases to 70 percent, by 2030 there will be fewer than 100,000 cases left in the United States. (Current estimate of people with chronic hep C is 2.5 million.)

■ Mortality from the disease will increase steadily and peak around 2020.

■ In 2011, the U.S. health care cost for hep C was approximately $6.5 billion. This burden should peak in 2024. Homie Razavi, PhD, of the Center for Disease Analysis in Louisville, Colorado, and the paper’s principal investigator, says, “From an eradication perspective, we’re looking at it very similar to polio, which is that it can be eliminated in the United States. Complete eradication will be tough, because you have to get other countries involved as well.”

Even Moderate Drinking Raises Risk of Death Having even one drink a day can significantly raise your risk of death if you’re living with hepatitis C. More booze, wine or beer than that can be particularly deadly. Researchers found that people with hep C who drank an average of two or more drinks a day had a more than 5-fold increased risk of death from all causes and a 184-fold increased risk of dying of liver disease. Those who drank an average of about one drink a day had a 2.29fold increased risk of dying from all causes and a 74-fold increased risk of death from liver disease. Lead investigator Zobair M. Younossi, MD, vice president of research for Inova Health System in Falls Church, Virginia, says, “The bottom line is that for patients with hepatitis C, even moderate alcohol use can be detrimental.”

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Talk to your doctor about getting tested. It could save your life.