A SMART+STRONG PUBLICATION HEPMAG.COM
YOUR GUIDE TO HEPATITIS
HCV Basics
How hep C virus affects your liver and your health
8
Risk factors you need to know
Hep C Treatment
Easier and shorter than ever before
Hitting the Jackpot How one man finally cured his hepatitis C
Jack Berlin
FROM THE EDITOR
GOOD VIBRATIONS CONTENTS 3 FROM THE EDITOR Learning about the hepatitis C virus 4 HCV BASICS How is hepatitis C virus transmitted • who is at risk for HCV • can HCV be prevented • how is HCV diagnosed • what are the symptoms? 6 TREATMENT Is hep C curable • what is the recommended treatment for HCV • what are the side effects • will health insurance help pay for treatment?
(COVER) BOB CROSLIN; (GUTIERREZ) JOAN LOBIS BROWN
8 PROFILE How Jack Berlin finally cured his hepatitis C
For more information on hepatitis, go to
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The bad news: None of us is getting any younger. As we age, we increasingly spend time and money on our health care. The good news: Getting older, for many of us, means getting wiser. We learn what matters most to us, which helps us prioritize. That’s what happened to our cover guy, Jack Berlin. The 60-year-old founder of a software company got hepatitis C virus (HCV) from a blood transfusion in 1976. Busy being a family man and succeeding in his career, he didn’t prioritize hep C at first. He was in relatively good health otherwise, and his HCV treatment choices were limited. Berlin finally decided to deal with his hep C in 2003. He endured a 48-week course of weekly interferon shots and daily ribavirin pills. He lost 40 pounds as a result of the flu-like side effects of interferon. Sadly, after all he went through, the treatment didn’t work. He went back to living his life, waiting for better treatment options. He tried again in 2011 after the U.S. Food and Drug Administration approved Incivek (telaprevir) and Victrelis (boceprevir), the first drugs to directly attack HCV. Each drug shortened treatment times and raised cure rates, but both still had to be used along with interferon and ribavirin. He had the same side effects, but this time he was cured. Berlin had found out about his hep C after donating blood in the early 1980s. Although he postponed treatment initially, knowing his HCV status gave him the opportunity to keep himself healthy in the meantime. Unfortunately, too many baby boomers—a key demographic group at high risk for hep C—remain unaware of their HCV status. The U.S. Centers for Disease Control and Prevention recommends that all people born between 1945 and 1965 get a one-time screening for hep C. Baby boomers are five times more likely to have HCV than other adults, making up as much as 75 percent of the country’s estimated 3.2 million hep C cases. As many as half of all HCV-positive boomers do not know they have the virus. Baby boomers are not the only ones who should get tested for hep C. In this issue, find out about the eight major HCV risk factors and other HCV basics, such as how the virus is transmitted and how HCV can be prevented. Last but not least, also get the basic facts about modern hep C treatment, which is easier and shorter than ever before. ORIOL R. GUTIERREZ JR. EDITOR-IN-CHIEF HEPMAG.COM FACEBOOK.COM/HEPMAG TWITTER.COM/HEPATITISMAG
Published by Smart + Strong, publishers of Hep and Hepmag.com. Copyright © 2015 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.
Editor-in-Chief: Oriol R. Gutierrez Jr. Managing Editor: Jennifer Morton Deputy Editor: Trenton Straube Copy Editor: Meave Gallagher Art Director: Mark Robinson Production Manager: Michael Halliday
SMART + STRONG President: Ian E. Anderson EVP and Publisher: Susan S. Levey Integrated Advertising Coordinator: Jonathan Gaskell
hepmag.com SPRING 2015 HEP 3
THE BASICS
Hepatitis C Basics
Hepatitis C virus (HCV) causes an infectious yet curable disease that attacks the liver and results in numerous symptoms. By Lucinda Porter, RN
HOW PREVALENT IS HCV? HCV is the most common blood-borne virus in the United States. The Centers for Disease Control and Prevention estimates between 2.7 million and 3.9 million Americans have HCV. Most don’t know they are infected.
HOW IS HCV TRANSMITTED? HCV is most easily spread through direct blood-to-blood contact. Common routes of HCV infection are: ■ Sharing needles and other equipment used to inject drugs ■ Blood transfusions and organ transplants that were performed before July 1992
WHO IS AT RISK FOR HCV? HCV testing is recommended for: Everyone born between 1945 and 1965 (three out of four people with chronic HCV are baby boomers) ■ People who have injected drugs, even once ■ Those who received a blood transfusion or organ transplant before July 1992 ■ Children whose mothers were living with hepatitis C during pregnancy ■ Anyone who is HIV positive ■ People with evidence of liver disease, such as an abnormal liver test result ■ Those on long-term kidney dialysis ■ Anyone exposed to HCV through their occupation ■
CAN HCV BE PREVENTED? Although there is no HCV vaccine, there are ways to reduce
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your chances of getting HCV or giving it to someone if you already have it. ■ If you inject drugs, seek help to quit. Regardless, don’t share anything associated with drug use, including noninjection drug equipment such as straws or pipes. HCV can live on these surfaces. ■ Don’t share toothbrushes or razors. ■ If you are considering a tattoo or body piercing, use a reputable, licensed professional who follows strict hygiene procedures. ■ Although sexual transmission of HCV is rare, there is a slight risk for those who are HIV positive, and among men who have sex with men. Condoms reduce the risk of transmitting HCV. ■ If you have hep C, be sure to cover cuts and wounds. If you get blood on a surface, clean up with a solution of one part bleach to 10 parts water.
HOW IS HCV DIAGNOSED? HCV testing begins with a test for antibodies, which the immune system produces after exposure to the virus. If antibody results are negative after at least six months since the suspected exposure, then the person does not have hep C. If the HCV-antibody test is positive, then a viral load or HCV RNA test is done. The presence of HCV RNA confirms hepatitis C infection.
WHAT ARE THE SYMPTOMS OF HCV? Many people with HCV have few or no symptoms. Initially, it may feel like you are “coming down with something.” Common symptoms in the acute phase are fatigue, muscle and joint pain, nausea and loss of appetite. People with chronic HCV also report fatigue and muscle and joint pain,
THINKSTOCK
WHAT HAPPENS WHEN SOMEONE IS INFECTED? The first six months following exposure is the acute phase of hep C. Up to 25 percent of people naturally clear the virus during the acute phase and are no longer infected. However, most are left with chronic HCV infection. If untreated, hep C may cause fibrosis (mild to moderate liver scarring), cirrhosis (serious liver scarring), liver cancer, liver failure and death. HCV is the main reason for liver transplants in the United States.
What about other types of hepatitis? Hepatitis means inflammation of the liver. Alcohol, prescription and nonprescription drugs, autoimmune diseases, and fat accumulation in the liver can all cause hepatitis. Viruses are the main causes of the disease. Here is what you need to know about the common causes of viral hepatitis:
Hepatitis A virus (HAV) is usually spread by putting something in the mouth that has been contaminated with feces from a person with hepatitis A. The most common HAV outbreaks occur when an infected food handler passes the disease to people who eat the contaminated food. Hep A is highly contagious. If you get HAV once, you can’t get it again. The HAV vaccine is recommended for children, people who have hepatitis C, and others who may be at risk.
Hepatitis B virus (HBV) Hepatitis C virus can be cured.
along with other vague symptoms. If the damage from hepatitis C progresses to severe scarring of the liver or cirrhosis, it may cause fatigue, bruising, loss of appetite, nausea, vomiting, abdominal discomfort, cola-colored urine, gray-colored stools, jaundice (yellow skin and whites of the eyes), itchy skin, and fluid in the lower extremities (edema). Some symptoms of advanced cirrhosis are a bloated belly from fluid accumulation (ascites), bleeding from blood vessels in the digestive tract (varices) and confusion (hepatic encephalopathy).
IF I HAVE HCV, HOW CAN I PROTECT MY LIVER? Everything goes through the liver, whether via the mouth, skin or lungs. Avoid alcohol. If you smoke or use recreational drugs, consider getting help to quit. Keep your immunizations current. Minimize exposure to fumes and toxic substances. Only take dietary supplements and medications under professional supervision. Try to live the healthiest lifestyle you can. Regular exercise, sufficient sleep and a diet rich in plant-based, non-processed foods are good not just for the liver, but for the entire body.
is highly infectious and commonly transmitted by sex, contact with blood or via childbirth. Most people who get HBV recover and are immune to future HBV infections. However, HBV can lead to serious, chronic disease in up to 10 percent of people it infects. Children younger than 5 who are exposed to HBV have up to a 50 percent risk of chronic infection. HBV slowly damages the liver and can lead to liver failure and liver cancer. People with chronic HBV usually can’t be cured, but they can be treated. The HBV vaccine is recommended for children, people who have hepatitis C, and others who may be at risk.
Hepatitis E virus (HEV) is probably the most common cause of acute hepatitis worldwide, perhaps infecting up to one-third of the world’s population. HEV is largely caused by poor sanitation and is uncommon in the United States. There is no HEV vaccine in the United States. People traveling in high-risk areas should avoid potentially contaminated water and food such as undercooked pork.
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TREATMENT
Hepatitis C Treatment
Treatment for hep C is easier than ever before. In clinical trials, roughly 95 percent of those who took the newest meds were cured. By Lucinda Porter, RN
Yes. When hepatitis C treatment is working, the virus will become undetectable in the blood within four to 12 weeks and will remain that way throughout treatment. People are considered cured of HCV when they have achieved a continuation of this undetectable status for 12 to 24 weeks after completing therapy. This is known as a sustained virologic response (SVR). The chances of HCV returning after 24 weeks of remaining clear of the virus are nearly zero.
WHAT IS THE RECOMMENDED TREATMENT FOR HCV? Whether this is your first time being treated for hepatitis C, or you have been treated before, a variety of new medications are available, including: ■ Harvoni
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■
■ ■
Sovaldi (always prescribed with another HCV drug such as ribavirin or Olysio) Viekira Pak Olysio (always prescribed with another HCV drug, usually Sovaldi)
Harvoni is two drugs formulated into one daily pill, whereas Viekira Pak is a combination of pills. In some cases, these medications may be prescribed with ribavirin. Peginterferon, an injectable medication with many side effects, is rarely used in the United States any longer. However, it may be prescribed in certain cases, such as for patients with the uncommon genotype 5.
WHICH HCV MEDICATION WILL MY DOCTOR PRESCRIBE FOR ME? Your doctor will prescribe medication and a treatment length based on
your health history and laboratory tests. The prescribed treatment is based on: ■ Your HCV genotype (the genetic structure of the virus) ■ Your viral load (how much virus is in your blood) ■ Your past treatment experience ■ If you have cirrhosis ■ If you are a liver transplant recipient or on the transplant waiting list ■ Your ability to tolerate the prescribed treatment ■ In some cases, HCV treatment may be limited by your health insurance plan or drug formulary.
WHAT ARE THE SIDE EFFECTS OF HCV TREATMENT? Although hepatitis C treatment has come a long way, all medications have side effects and risks. When they occur, the side effects are usually mild.
THINKSTOCK
IS HEPATITIS C VIRUS (HCV) REALLY CURABLE?
Here are some common side effects for frequently prescribed HCV meds:
Harvoni (ledipasvir/sofosbuvir) Harvoni is fairly easy to tolerate because it is rarely used with ribavirin. The most common side effects are diarrhea, fatigue, headache, insomnia and nausea.
Copegus, Moderiba, Rebetol, Ribasphere (ribavirin) When ribavirin is prescribed, it is always taken with one or more other HCV medications. Ribavirin has more side effects than the newer HCV drugs. The most common are anemia (low red blood cells), difficulty concentrating, fatigue, increased heart rate, insomnia, irritability, itchy skin, lightheadedness, loss of appetite, moodiness, nausea, rash, upset stomach and weakness. Ribavirin may cause fetal death or abnormalities, so if pregnancy is a possibility, read the strong warnings that accompany the prescription information.
Olysio (simeprevir) Olysio is prescribed with one or more other HCV medications, particularly Sovaldi. In addition to nausea, Olysio frequently causes skin problems, such as itching, rash and a potentially serious reaction to the sun known as photosensitivity.
Pegasys and PegIntron (peginterferon or PEG) Newer drugs have largely replaced PEG, but it is still used occasionally. With over 40 potential side effects, PEG is the HCV medication with the highest risk. Common side effects are: depression, dry mouth, fatigue, flu-like symptoms (chills, fever, joint and muscle aches), gastrointestinal disorders (abdominal pain, decreased appetite, diarrhea, nausea), hair loss, headache, injection site reaction, insomnia, neutropenia (low white cells), pain (back, joint, muscle), and thrombocytopenia (low platelets).
Sovaldi (sofosbuvir) Sovaldi’s side effects are mild. However, since Sovaldi is always prescribed with other medications
such as ribavirin or Olysio, the list of side effects expands to include any associated with those drugs. Without ribavirin or Olysio, fatigue, headache and nausea are the most common side effects of Sovaldi.
Viekira Pak (ombitasvir/ paritaprevir/ritonavir, dasabuvir) Viekira Pak may be prescribed with or without ribavirin. Without ribavirin, the most common side effects of Viekira Pak are insomnia, itching, nausea, photosensitivity and rashes. Viekira Pak may increase liver-related lab tests such as ALT and bilirubin.
PEOPLE ARE CONSIDERED CURED WHEN THEY ACHIEVE A SUSTAINED VIROLOGIC RESPONSE. WILL INSURANCE PAY FOR HCV TREATMENT? Hepatitis C treatment is covered under most insurance plans, including Medicare and Medicaid. However, HCV drugs are costly, and treatment is often denied for various reasons. Patients who have mild liver disease are commonly denied treatment. Despite this, patients are often able to win approval after they have appealed the insurer’s denial of coverage. Obtaining insurance approval is half the battle; the other half is being able to afford your drug co-pay. Even with insurance, the drug co-pays can be thousands of dollars. Fortunately,
patient assistance programs are usually able to reduce these out-ofpocket costs to affordable amounts.
WHERE CAN I FIND HELP FOR PAYING FOR HCV TREATMENT? Whether navigating insurance red tape or getting help paying for HCV medications, patient advocacy and assistance programs have helped countless patients obtain affordable HCV treatment. There are many helpful organizations, such as: ■ Help-4-Hep, 877.Help4Hep (877.435.7443), help4hep.org ■ Patient Access Network Foundation, 866.316.PANF (866.316.7263), panfoundation.org ■ Patient Advocate Foundation’s Hepatitis C CareLine, 800.532.5274, hepatitisc.pafcareline.org
WHAT ARE THE COMPLICATIONS OF HCV? The main complications of HCV are cirrhosis (severe liver scarring), hepatocellular carcinoma (liver cancer) and death. People with hep C are at risk for medical problems that are outside of the liver. These are called extrahepatic manifestations, and they include certain skin and kidney diseases, lymphoma, and autoimmune conditions.
IF CURED, WILL HCV TREATMENT REDUCE THE RISK OF COMPLICATIONS? People who are cured of HCV before they have cirrhosis will usually have reversal of liver disease. Their risks for complications are much like those who never had hep C. Extrahepatic manifestations may resolve if they were caused by hep C. People whose HCV is cured after they already have cirrhosis may benefit from treatment, but they still need to be monitored for complications such as liver cancer.
CAN I GET HEPATITIS C AGAIN AFTER I AM CURED? Yes. Unlike most viruses, the hepatitis C antibody does not protect against reinfection. Avoiding blood contact is the best prevention against acquiring hepatitis C.
hepmag.com SPRING 2015 HEP 7
PROFILE
Jack Berlin at his offices in Florida
PUSHING HIS LUCK
How one man finally hit the jackpot of a hepatitis C-free life ack Berlin doesn’t want you to think he’s anything special. He may be a successful businessman, but he’s no smarter than anyone else. He’s just a responsible, pay-it-forward kind of guy who’s been very lucky: fortunate to have found a profession that taps his passions and propels him to work hard; blessed with a rich family life. Oh, and he kicked hepatitis C in the butt. The president and founder of a software company in Tampa, Florida, the 60-year-old got hepatitis C virus (HCV) from a blood transfusion he received after he developed a perforation in his stomach as a student at Duke University in 1976. Compared with many of his HCV-positive baby boomer peers, Berlin found out he had the virus early. After donating blood in the early 1980s, he got a letter from the Red Cross rejecting the donation because he had what was then known as non-A, non-B hepatitis. As the ambiguous name suggests,
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little was known about the virus at the time. The only medical advice Berlin received was to avoid alcohol—a directive that, he says, “I didn’t heed much, so I am damn lucky!” It wasn’t until he became a family man—he married in 1986 and he and his wife, Leslie, had the first of two biological children four years later—that he really stopped to think that he might want to look into this whole hepatitis matter. After all, scientific progress had been made since he first found out he was infected. Once his company was “off life support” in the mid-1990s, he got a primary care physician who regularly monitored his liver’s well-being. “I was lucky I still had a liver, because [hep C] does progress for different people in different ways,” he says. Still, his liver was hardly at the forefront of his mind. “Somebody had to pay the bills, somebody had to pay the mortgage,” he says. “There was too much to do to focus on hepatitis C.”
BOB CROSLIN
J
By Benjamin Ryan
Finally, in 2003, despite having only minimal liver damage, and despite always feeling “healthy as a horse,” Berlin saw a gastrointestinal specialist about hep C treatment. At the time, the only hope for a cure was a miserable 48week course of weekly interferon shots and daily ribavirin pills. The flu-like side effects from interferon were so bad that the six-foot-two Berlin plummeted from his usual 180 pounds to around 140. “It was really sad,” recalls Leslie. “It was everything I could do just to get him up and out the door. But having a job, and having the responsibilities and something to do, kept him going.” At one point, saddled with nausea, he kept on going all the way through an address to the shareholders of a company he was looking to buy. Then he beat a hasty retreat to the bathroom. “I remember finding a stall and just puking my guts up, cleaning myself up, washing my face and running back out there,” he says. “My message there is you can make it work.” Unfortunately, that brutal year-long treatment didn’t work for Berlin. Six months after he received his last interferon shot, a test showed his virus had returned. Not to worry, though. This affable Southerner—he grew up in Savannah, Georgia, and has a self-deprecating, folksy charm—reads from the silver linings playbook. The treatment experience, he says, blessed him with new insight. While he was in the thick of it, ribavirin gave him such bad anemia he had to go in for periodic red and white blood cell shots. Waiting his turn in the clinic, he found himself surrounded by people with ports running out of their veins. They all had cancer and were waiting for chemotherapy treatments. “I would sit there and say, ‘You know what, I’m the luckiest bastard on this planet. I’m just here because I’m fighting hep C, and I’ve got a chance at a cure, and most of these people are fighting for their lives.’ I got humbled by that experience and learned to stop complaining so much. Although it’s more fun to complain than not.” In the following years, life got especially busy for Berlin, so once again fighting hep C had to stay on the shelf. His company was doing great, and he and his wife quite serendipitously wound up taking two more kids into their fold. One night his then-15-year-old son asked if a friend could stay with the family while the two of them attended a week-long basketball camp. The boy was in need of a stable home so he went on to live with the Berlins full-time for his freshman year, and then part time through the rest of high school. Not long after, another of Berlin’s son’s sports buddies, who had a similar need for a family to help care for him, came to stay as well. “I have two real ones and two fake ones!” Berlin quips about his expanded brood. The “fake ones” turned out to be the real deal in sports, and both were aggressively recruited by colleges. This required Berlin to come up with an official title for himself when signing forms on their behalf. That’s how he became The Godfather. “I haven’t got anybody to kiss my ring yet,” he says. Whenever someone points out how his family’s story mirrors the 2009 Oscar-winning film The Blind Side (he and his wife are
white, while the two sport-star children are African American), Berlin says he loves to get a rise out of Leslie in public by joking, “You mean I could’ve married Sandra Bullock?” But as all the mayhem, excitement and fun of a full house and high school basketball games galore drew to a close, Berlin knew it was time to face what Leslie refers to as that “dark cloud that’s just kind of out there.” In 2011, the U.S. Food and Drug Administration (FDA) approved the first drugs that directly attack hep C. Incivek (telaprevir) and Victrelis (boceprevir) each shortened treatment times and raised cure rates, although both still had to be paired with interferon and ribavirin. At the time, Berlin consulted with an expert on the virus who explained that more effective, interferon-free treatments would likely come in another three to five years (it turned out to be two). But even though he still had minimal liver damage, Berlin, who was 56 by then, felt it was time to beat hep C. So he could be free of it before the big 6-0. So he could enjoy a glass of wine without guilt. He based the timing of his treatment on family milestones, waiting to begin the 24 weeks of Incivek until the spring of 2012, just after his daughter graduated from Duke and the three boys, now young men, finished high school. Then it was déjà vu all over again. The dreadful side effects returned full force, along with dramatic mood swings. Berlin, who rarely loses his temper, came home from work one night in such a rage about his employees that Leslie and their daughter, fearing he might fire the entire company, talked him out of going to work the next day. One of the things that got him through this second go-round was the support and community he found from his active—and, since then, ongoing—participation in the interactive forums on Hep’s website, HepMag.com. “It really helps for people to see other people have been through what they’re going through, and to be able to ask questions,” he says. “I know that what touched me most, to tears, were some of the YouTube video diaries of people going through the same treatment I was going through. I would watch them repeatedly while I was down.” Thanks in large part to constant support from Leslie, he made it through that second trying experience. When the doctor gave the two of them the good news, Leslie says, “I just started crying. The relief was amazing.” Berlin says, “I couldn’t believe it, and really sometimes still don’t.” As the elation died down, Berlin kept right on going, same as always. To him, the biggest thing about being hep C-free is “it’s just one less thing to worry about—not having the virus in there nibbling on my liver.” Delighted to see interferon fall by the wayside thanks to recent advancements in hep C treatment, Berlin has committed his own brand of passion to urging others he’s met online to pursue a cure. And as for how well it all turned out for him? He says it’s no big thing. He just got lucky. ■
“I’m fighting hep C, and I’ve got a chance at a cure.”
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