HEP Winter 2014 by Smart + Strong

SPECIAL SUPPLEMENT ON HEPATITIS C A SMART+STRONG PUBLICATION WINTER 2014 HEPMAG.COM

YOUR GUIDE TO HEPATITIS

Sage Support

Alan Franciscus is one of the pioneers of hep C activism in the United States

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HEPMAG.COM Hep Stories

Hepatitis 101

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

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

Overheard in the Forums

Riverside, California Diagnosed in 2013

Chuck Early

Pinckney, Michigan Diagnosed in 2000

Melanie Hofmann Berkeley, California Diagnosed in 2002

Conference Updates Read the latest news and highlights from conferences around the world including the 65th annual meeting of the American Association for the Study of the Liver (a.k.a The Liver Meeting) in Boston.

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.

Having Side Effects? To learn about the different side effects that can occur with the various meds for hep C and to ﬁnd out what you can do to remedy them, visit hepmag.com/ sideeffects.

Patient Assistance Programs Are you uninsured? Are your prescription co-pays or other co-insurance costs too expensive? Go to hepmag.com/copays for a list of co-pay and patient assistance programs for hepatitis B and C.

(BLOGGERS) COURTESY OF BLOGGERS; (VIRUS) AP PHOTO; (BOSTON, MAN, PIGGY BANK/MONEY) THINKSTOCK

Jennifer Cazier

I called Accredo [a specialty pharmacy] with Express Scripts yesterday and was told that my Harvoni was denied. I was told that my paperwork stated that I do not have hep c and that I did not have a liver biopsy, which is crazy! My doctor’s ofﬁce is going to appeal it, but it could take up to 14 days. I am really bummed out. I don’t know how long they are going to stall this, and when and if it will get approved.

FROM THE EDITOR

WE ARE THE CHAMPIONS CONTENTS 3 FROM THE EDITOR Advocating for your health care

(COVER) WINNI WINTERMEYER; (GUTIERREZ) JOAN LOBIS BROWN

4 TREATMENT NEWS The importance of confirming hep C tests • hep C treatment guidelines prioritize care • hep C-related liver disease differs by race • success for “3D” combo in those coinfected with HIV • hep C is up in rural injection drug users 6 FEATURE The Hep 10: Meet 10 advocates who are raising awareness about the virus and making sure everyone has access to care and treatment.

For more info on hepatitis, visit

hepmag.com

Advocating for your rights—and especially the rights of others—isn’t easy. It often requires many of us to get out of our comfort zones. It sometimes means we have to stand up to the powers that be with no guarantee of success. This uncertainty keeps some of us on the sidelines, even when we have skin in the game. Sticking your neck out can be risky, but the rewards can make it worthwhile. Taking all of the above into account, it’s no wonder many of us admire the efforts of advocates. They take risks and sometimes reap rewards. Even when they lose a battle, they stay focused on winning the war. In recognition of their advocacy for people living with the hepatitis C virus (HCV), I’m honored to introduce the Hep 10. These 10 men and women are longtime HCV advocates. In alphabetical order, they are: Orlando Chavez of the Oasis Clinic, Ryan Clary of the National Viral Hepatitis Roundtable, Alan Franciscus of the Hepatitis C Support Project, Jules Levin of the National AIDS Treatment Advocacy Project, Heather Lusk of The CHOW Project and Hep Free Hawaii, Michael Ninburg of the Hepatitis Education Project, Lorren Sandt of the Caring Ambassadors Program, Gloria Searson of COPE, Susie Simon of the Hepatitis C Association, and Nancy Steinfurth of the Hep C Connection. No list is ever definitive, but we believe these folks possess the skills needed by successful advocates. Alan Franciscus is a wonderful example, which is why he graces our cover. After his HCV diganosis in 1996, Alan realized there was a lack of education on the virus among the general public, as well as among health care providers. He launched hcvadvocate.org to address those concerns. Although he’s now cured, Alan continues his hep C advocacy. We thank Alan and the other advocates on our list for their efforts. Go to page 6 to read more about the Hep 10. The power to advocate, however, doesn’t just belong to a select few. Self-empowerment is essential for each of us to maximize our own health and wellness. If you or a loved one is living with HCV, the more you know about the virus, the better the outcomes of treatment. This is a great place to start. 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 © 2014 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 Editor-at-Large: Benjamin Ryan 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 WINTER 2014 HEP 3

TREATMENT NEWS

of T Importance The Im Confirming Hep C Tests Confirm C In Individuals ndividuals who test t positive for hep C antibodies but w who don’t get a confirmation fir rmation throug through a genetic screen may fall through cracks in the health m care ca are system. They The may also be subject jec ct to unnecess unnecessary care, since an antibody an ntibody test cou could always be a false positive; po ositive; the gen genetic test clears up this th his uncertainty. Researchers combed through re ecords of Vetera records Veterans Affairs clinics be etween 1991 and 2010 and found 419 between pe eople who receiv people received a positive hep C an ntibody test (HCVab) (HC antibody but who did no ot receive the re not required ribonucleic ac cid (RNA) confi acid confirmation. In 31 perce ent of these cases, ca cent the positive HCVab test result HC results went unacknowled dged by clinician edged clinicians.

Amy A. Hirsch, PharmD, clinical pharmacy specialist for HIV and hepatitis at the Cleveland VA Medical Center and the study’s senior author, says that physicians overseeing physical health often didn’t refer patients to hep C care out of fear that the interferon treatment would aggravate mental health conditions. Now that interferon is falling by the wayside, this pattern will hopefully change, she added. To ensure tests go confirmed, Hirsch says testing facilities should adopt what’s called a “reflex testing policy,” in which two tubes of blood are drawn for a hep C test: one for the HCVab and another for the RNA confirmation if necessary.

Hep C-Related C Related Liver Live Disease Disea Differs by Race

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cirrhosis and a 61 percent greater risk of liver cancer when compared with whites. Meanwhile, African Americans had a 42 percent reduced risk of cirrhosis and a 23 percent reduced risk of liver cancer compared with whites. Hashem B. ElSerag, MD, MPH, the chief of gastroenterology and hepatology at

both Baylor College of Medicine and the VA Medical Center in Houston, says that genetic differences as well as differences in obesity and insulin resistance may help explain the varying levels of risk according to race. “Studies have shown a much higher incidence of obesity, particularly abdominal obesity, among [Latinos],” he says.

ALL IMAGES: THINKSTOCK

If you have hep C virus (HCV), your likelihood of developing cirrhosis or liver cancer may be linked to your race. To determine this connection, researchers examined Veterans Administration records of those confirmed to have hep C between 2000 and 2009; they also looked at cases of liver cancer and cirrhosis among the HCV-positive population through early 2010. During an average 5.2 years of follow-up care, 13,000 out of 150,000 people with hep C developed cirrhosis and 3,500 of the total were diagnosed with liver cancer. The respective rates of cirrhosis and liver cancer per 100 person-years among the three racial groups were as follows: Latinos, 28.8 and 7.8; whites, 21.6 and 4.7; and African Americans, 13.3 and 3.9. After adjusting for various factors, researchers found that Latinos had a 28 percent greater risk of

Success for “3D” Combo in Those Coinfected With HIV

Twelve weeks of AbbVie’s “3D” regimen cured 93.5 percent of those with genotype 1 of hep C who were coinfected with HIV, including those with cirrhosis, in a recent Phase II/III trial. Following a recent theme in hep C care, the results were in line with those of HCV-positive

people without HIV who were treated with the same drugs. The 3D regimen is made up of a fixed-dose combination of the NS3/4A protease inhibitor ABT-450 and ritonavir coformulated with the NS5A inhibitor ombitasvir (ABT-267), as well as the non-nucleoside polymerase inhibitor dasabuvir (ABT-333). In this study the regimen was given with ribavirin. There were no serious adverse effects to 3D in the trial. The most commonly reported side effects were fatigue, insomnia, nausea, headache, upper respiratory infection and itching. The study’s lead author, Joseph J. Eron, MD, a professor at the University of North Carolina at Chapel Hill School of Medicine, says that while the 3D regimen provides “alternatives in the interferon-sparing world as it rapidly approaches,” he imagines that AbbVie will likely only succeed in steering significant numbers away from Gilead’s new once-a-day Harvoni (ledipasvir/ sofosbuvir) combination pill if the price is right.

ALL IMAGES: THINKSTOCK

Hep C Is Up in Rural Injection Drug Users As prescription drug abuse leads more Americans on a path to heroin, new cases of hep C are rising among young people in non-urban areas of the eastern United States. Analyzing Centers for Disease Control and Prevention (CDC) surveillance reports covering 2006 to 2012, researchers found that, out of 7,077 total hep C cases for which there was information about age, 44 percent were 30 years old or younger. This proportion was just 36 percent in 2006 and rose to 49 percent by 2012. The number of new annual hep C cases, also known as incidence, among young people in non-urban counties increased by 13 percent annually, compared with 5 percent in urban counties. Thirty out of 34 states, or 88 percent, that reported hep C cases saw a higher hep C incidence in 2012 than in 2006, especially

in non-urban counties east of the Mississippi River. Looking at data from 635 young people diagnosed with hep C between 2011 and 2012, the researchers found that three-quarters reported injection drug use. Out of that group, 75 percent had previously abused prescription opioids an average of two years before using heroin. Saying he was “deeply concerned” by the study’s findings, Scott D. Holmberg, MD, MPH, chief of the epidemiology and surveillance branch of the Division of Viral Hepatitis at the CDC, suggested that the higher hep C incidence in non-urban settings was partially a consequence of the fact that programs to treat drug use, to treat hep C and to provide clean drug injection equipment are often “nonexistent or far distant” for people in these areas.

Hep C Treatment Guidelines Prioritize Care The American Association for the Study of Liver Diseases and the Infectious Diseases Society of America have issued a new chapter of their hep C treatment guidelines that instructs clinicians on how to prioritize treatment among patients. The highest priority, the guidelines say, should be given to those who have advanced fibrosis, compensated cirrhosis and those who have had a liver transplant. High priority should also be given to those who are at significant risk for liver-related complications and for severe complications from hep C that are not related to the liver. The language of the guidelines implies that they were established in anticipation of a possible shortage of both clinicians as well as money to pay for hep C treatment. However, members of the panel of 27 liver disease and infectious disease specialists who developed the guidelines have stressed that they recommend treatment for all, regardless of severity. Jules Levin, executive director of the National AIDS Treatment Advocacy Project and a major national advocate for people living with hep C, says it was wrong of the panel to make prioritization recommendations. “It gave cover to all the Medicaid programs to impose restrictions,” he says.

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Alan Franciscus created the Hepatitis C Support Project to educate others about the virus.

CREDIT TK HERE

FEATURE

THE

Hep Meet 10 fierce HCV advocates who are raising awareness about the virus and making sure everyone has access to care and treatment. By Tim Murphy

WINNI WINTERMEYER

e’re living in an exciting, hopeful era for curing hepatitis C virus (HCV), with powerful new drugs on the market and more to come. These drugs are making treatment shorter and easier to take, and they’re boosting cure rates to nearly 100 percent. But prior to this optimistic moment, some folks—with and without a history of hep C—have been on the front lines of the fight against this disease for years. They provide lifelines for newly diagnosed people as well as those living long-term with the virus. They start support groups, help patients understand the latest science and advocate for their best options in an imperfect world, and they push drug makers and law makers to invest in testing, care and treatment for those living with the virus.

In a word, they’re hep superstars, mavericks who’ve been working hard, often with little credit, to get the word out about HCV to an underinformed public and to make sure that everyone has the best access possible to care and treatment. Often they’ve had to tear down walls of stigma, bias and misinformation as they insisted that everyone has a right to quality care. It hasn’t always been easy. Nor will it get easier in an era when effective treatment is available but high prices threaten to hold it back from all who need it. From the Pacific Northwest to the Bay Area to New York City, these advocates do a lot of one-onone caregiving and counseling on a daily basis. They also head to their statehouses and to DC, where they demand continued support. Here, we salute them. Meet 10 inspiring individuals around the nation working to make hep C a thing of the past.

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ORLANDO CHAVEZ, 63 Oakland, CA

cured,” he says. “I’ve regained my physical and emotional health. Everyone should be able to experience that freedom.”

Orlando Chavez got involved in hep C activism when he came to the Oasis Clinic a decade ago for treatment: “Everyone else had written me off, doctors would not treat me, and I wasn’t getting the right information to make an informed decision.” He cleared the virus with interferon and ribavirin but, he says, “once I saw how many others were perishing for lack of knowledge, I knew I had to get involved.” His top priority at Oasis is pushing for fair and affordable access to care and treatment. He says that Oasis’s nonjudgmental harm-reduction approach helped him gradually stop using drugs completely and quit cigarettes. “More traditional approaches fit me like tight shoes,” he says. “Good for a few miles—then come the blisters!” To HCV-positive folks, he says, “Don’t freak out; you’re part of a very big family. Find a support group and get educated. We all deserve a cure.”

JULES LEVIN, 64 New York, NY

Senior peer educator, Oasis Clinic

RYAN CLARY, 45 San Francisco, CA

Executive director, National Viral Hepatitis Roundtable In 2006, HCV advocates asked Ryan Clary to share strategies and lessons he’d learned from years in HIV grassroots organizing. “Seeing the shamefully inadequate resources for hep C, I decided it was time to join the fight,” he says. Since then, he’s helped lead successful efforts to change the U.S. Preventive Services Task Force’s hep C testing recommendations and to ensure that Medicare covers HCV testing at no extra cost to patients. His top goal going forward? “Ensuring that everyone—and I mean everyone—who has hepatitis C knows their status, is linked to care and has access to the cure.” He urges HCV-positive folks to speak up to help create change: “Being an activist starts by telling your story. Speak out, demand change and hold our leaders accountable.”

ALAN FRANCISCUS, 65 Sacramento, CA

Founder and executive director, Hepatitis C Support Project After a 1996 HCV diagnosis, “I realized there was no one out there educating people and providers,” says Alan Franciscus, one of the pioneers of hep C activism. So he started a support group, which included those who had both hep C and HIV. “The more I did, the more need I found,” he says. So he started hcvadvocate.org, set up national training workshops and printed educational publications. “It’s an honor to educate people with hep C and those providing services to them,” he says. His top goal going into 2015 is to help people access powerful but costly new hep C drugs. As for him, a third try at HCV treatment—pegylated interferon plus ribavirin— lasted a grueling 70 weeks. “It was worth it because I was

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Founder and executive director, National AIDS Treatment Advocacy Project Jules Levin tested positive for HIV in 1987 and then for hep C a decade later. “I realized HIV/HCV coinfection was going to be a big concern but wasn’t getting any attention,” he says. Though he cleared his own hep C in 2002, he devoted his life to helping people living with HIV and/or HCV, playing a key role in getting hep C incorporated into the federal Ryan White CARE Act for people with HIV/AIDS. He’s a pioneering coinfection advocate whose National AIDS Treatment Advocacy Project site is widely read for the latest news from medical conferences. “Get treated, don’t delay too long, and get rid of the virus,” is his advice for folks with hep C. He also wants everyone to become an activist. “After all these years of waiting,” he says, “we can finally cure people with 12 weeks of interferon-free, tolerable therapy. But we must get the federal government and the states to invest in testing and linkage to care and treatment.”

HEATHER LUSK, 43 Honolulu, HI

Director, The CHOW Project; co-director, Hep Free Hawaii Attending a global hep C conference in 1995 sparked Heather Lusk to do something about the disease. “I didn’t get hep C, but I could have easily gotten it” due to past drug use, she says, “so I felt blessed and [knew] that I had to help fight this epidemic.” Since then, she secured ongoing funds for HCV screenings in Hawaii and she launched Hep Free Hawaii’s care coordinator program, which provides free medical case management for Honolulu residents living with hep B or C. She’s dedicated to increasing access to testing and to treatment. “With a cure out there, people should know their status and have access to culturally competent care and lifesaving meds,” she insists. To those living with the virus, she urges, “Break the silence! Contact your local and national policy makers and let them know why hep is important. It sounds clichéd, but one person really can make a difference.”

MICHAEL NINBURG, 46 Seattle, WA Executive director, Hepatitis Education Project

Michael Ninburg became head of the Hepatitis Education Project in 2001 while he was a hep C patient. “There was clearly a need for the support and advocacy that the project provided, and there still is now, more than ever,” he says. Since

then, he counts legislative and policy advances among his successes, but not more than the achievement of “getting individuals tested, treated and cured.” Ninburg himself was cured in 2009 in a clinical trial for the drug telaprevir (Incivek). “The side effects were terrible, but it worked,” he says. To those with the virus, he advises: “Now’s the time to get treated and cured. Treatment has come a long way the past year, now that interferon is out of the mix. Cure rates are approaching 100 percent. No one has to die from hepatitis C anymore—it’s simply a question of making it a priority and allocating resources.”

after her diagnosis, she got involved with counseling other newly diagnosed folks so that they “did not feel as frightened and alone as I did when I was diagnosed,” she says. At the Hepatitis C Association, she’s proud to have launched an HCV education program for use in substance abuse clinics throughout the country, which was funded by the U.S. government for a decade. “Don’t fear the new treatments,” she says. “They are easier than ever in terms of side effects and duration of treatment. So know your status and get tested. There’s a cure now for most people.”

LORREN SANDT, 53 Beavercreek, OR

NANCY STEINFURTH, 56 Denver, CO

A brother’s 1999 hep C diagnosis plunged Lorren Sandt into activism. Since then she helped create the first national coalition of HCV working groups, resulting in a 2009 merger of the National Hepatitis C Advocacy Council and the National Viral Hepatitis Roundtable. The coalition has published the Hepatitis C Choices book, now going into its fifth edition. Next year, she’ll focus on building new leaders in hep C policy through the Hepatitis Leadership Corps, with a goal of getting the Viral Hepatitis Testing Act signed into law. “Be an ambassador for your own health,” she urges people with hepatitis. “Educate yourself and advocate for your needs!”

A former arts administrator, Nancy Steinfurth says, “I didn’t know what I was getting into,” when she took the helm of Hep C Connection. But since then, she’s gotten the Colorado legislature to twice restore crucial funding for hep C programs and to pass a law recommending that Colorado baby boomers get tested for the virus. Her top challenge going forward? “Working to expand access to hep C treatment through Medicaid,” she says. “We don’t want people to be as sick as they currently have to be to qualify.” Steinfurth does not have HCV, but she knows several middle-agers who do. “One passed away because she was too ashamed to seek treatment; one cleared the virus but is too ashamed to talk about it with anyone; and another one needs treatment but won’t give up beer,” she says. She urges folks in Colorado and beyond to call her group’s help line: 800.522.4372.

Co-founder and executive director, Caring Ambassadors Program

GLORIA SEARSON, 55 West Haven, CT

(FRANCISCUS) WINNI WINTERMEYER; (ALL OTHERS) COURTESY OF INDIVIDUALS

President, COPE/Coalition on Positive Health Empowerment

Executive director, Hep C Connection

Living with both HIV (undetectable since 1996) and hep C (currently undergoing treatment), Gloria Searson, MSW, helms the East Harlem–based COPE, which educates and links to care folks with liver-affecting illnesses including hep C. Her focus on HCV evolved out of her work in substance abuse, HIV and other social-justice challenges that create health disparities. She’s proudest that, at COPE, she and others have created “a coalition of advocates and patients fighting for access, education and quality care,” she says. She urges others living with HCV to “get educated and select what options will work for you. Go for the cure!” She says that, despite improved hep C treatment, there’s still much work to be done. “We need partnerships from grassroots groups all the way to every statehouse in the world!”

RESOURCES

SUSIE SIMON, 70 Scotch Plains, NJ

Hepatitis C Association

Caring Ambassadors Program

Hep C Connection hepc-connection.org

hepcchallenge.org

The CHOW Project

Hepatitis Education Project hepeducation.org

chowproject.org

COPE/Coalition on Positive Health Empowerment copehealth.org

Hep Free Hawaii hepfreehawaii.org

National AIDS Treatment Advocacy Project natap.org

President, Hepatitis C Association Diagnosed with hep C in 1991, Susie Simon underwent years of failed treatments until finally clearing the virus in a clinical trial in 2013. A few years

hepcassoc.org

National Viral Hepatitis Roundtable nvhr.org

Hepatitis C Support Project

Oasis Clinic

hcvadvocate.org

oasiscliniconline.org

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HEPATITIS

DOES NOT DISCRIMINATE.

IT AFFECTS MILLIONS

AND CAUSES LIVER CANCER. Talk to your doctor about testing. Early detection saves lives.

Publication No. 221236