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Living the Dream An aspiring actor celebrates being cured of hepatitis C

Jackie Johnson

Got Ink? An estimated 3–5 million Americans are living with hepatitis C. Most don’t know it. Get tested today.


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JOEL KAPLAN Published by Smart + Strong. Copyright © 2018 CDM Publishing LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior written permission of the publisher. Smart + Strong® and Hep® are trademarks of CDM Publishing, LLC.

CONTENTS 3  FROM THE EDITOR The importance of pursuing getting cured of hepatitis C

ackie Johnson learned he was living with hepatitis C virus (HCV) in 2010 after a doctor’s visit led to him getting an HCV test. He’d gone for a checkup after experiencing extreme fatigue daily, which he attributed as a side effect of his HIV medications. He had tested positive for HIV not long before. Johnson received his HCV-positive test result while still living in Dallas, where he was born and raised. A doctor at the time told him that a liver screening showed no scarring and that the hep C treatment of the day was both heavy on side effects and suboptimal. As a result, Johnson decided it was best to put hep C on a back burner. Doing so allowed Johnson to pursue his acting ambitions. He saved up money and eventually moved to New York City in 2014. He struggled for a while, working odd jobs to pay his bills. However, he did connect to care soon after he arrived. In 2015, he took advantage of the latest hep C treatments and was soon cured of HCV. Johnson’s story illustrates the importance of pursuing your life goals, whether they be acting or getting cured of hep C. Please go to page 8 to read more about Johnson’s journey to better health. In addition to treating and curing your hep C, achieving and maintaining overall health and wellness is a life goal we all should consider. However, for people living with hep C who are also dealing with additional health concerns, managing general wellness and getting cured of HCV is that much more important. Case in point: For those living with chronic kidney disease (CKD), getting cured of hep C is not only important but likely. For people with CKD, treating their

HCV was once considered difficult on the older hep C medications. A new study shows that newer direct-acting antiviral therapies are effective for those with CKD. In fact, researchers have become so confident in curing hep C with the latest meds that they are studying whether HCV-negative people could receive kidney transplants from HCV-positive donors. A small study found that doing so and then treating the recipients for hep C was safe and effective. Go to page 6 for more. The good news about hep C cures is spreading. Nonetheless, baby boomers have been slow to get tested. The majority of people living with hep C in the United States were born between 1945 and 1965. Getting them tested for HCV is critical. To that end, the Centers for Disease Control and Prevention now recommends a one-time test for baby boomers, regardless of hep C–related risk factors. The message is working. Go to page 4 for more.


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4 NEWS Hep C testing rising among baby boomers • People who inject drugs succeed with hep C treatment • Hep C vaccine unlikely by 2030 • First person contracts rare strain of hep E

6 TREATMENT NEWS Got kidney disease? You can still beat hep C • HCV-positive kidney transplants • Curing hep C may dial back liver damage • Supervised injection sites to offer hep C services

8 PROFILE Health care advocate and aspiring actor Jackie Johnson finds himself in the spotlight after being cured of hepatitis C. WINTER 2018 HEP 3


Hep C Testing Slowly Rising Among Baby Boomers

A man in Hong Kong is the first person in the world to contract a rare strain of hepatitis E virus previously found only in rats and other animals. Chinese health officials say the infection is a wake-up call for Hong Kong to improve its public hygiene. The 56-year- old patient, who lives in public housing, had liver transplant surgery last year and tested positive for hep C after displaying recurring liver function problems following surgery. While local authorities say there is no evidence of an imminent epidemic, the infection highlights Hong Kong’s growing public hygiene problem. “These kinds of unusual infections, rare infections, first instances—even one case is enough to make public health authorities and researchers very alert about the implications,” said Siddharth Sridhar, a clinical researcher at Hong Kong University’s department of microbiology who was involved in studying the patient. Although it is still unclear how the man contracted the virus, it is thought he might have accidentally ingested rat droppings. Doctors are reporting that the man’s condition is now “completely normal” after he was treated with ribavirin, a common antiviral medication.


percent in 2017. Among those born between 1966 and 1994, the testing rate increased from 12.3 percent to 17.3 percent during this time. The study authors theorized that the rise in testing among non–baby boomers was driven in part by greater awareness of hep C as a result of the opioid epidemic. The CDC recommendation of the one-time HCV test as well as greater awareness of the newer generation of treatments for the virus might have influenced the rising rate among baby boomers. Those less likely to receive HCV testing included women, people without a high school diploma and those born outside the United States. Insurance type was associated with variations in the testing rate; those with military and public health insurance were more likely to receive testing for the virus.


First Person Contracts Rare Strain of Hep E

Members of the baby boom generation are increasingly receiving testing for hepatitis C virus (HCV). Those born between 1945 and 1965 account for the majority of those living with hep C in the United States. The Centers for Disease Control and Prevention (CDC) recently started recommending a one-time test for everyone in this birth cohort, regardless of any other hep C–related risk factors. Publishing their findings in Clinical Infectious Diseases, researchers analyzed 2013 to 2017 data on 133,602 adults born between 1945 and 1994 who responded to the National Health Interview Survey conducted annually by the National Center for Health Statistics. The survey inquires about hep C testing. Among baby boomers, reported HCV testing increased from 13.2 percent of respondents in 2013 to 16.8

People Who Inject Drugs Succeed With Hep C Treatment

Given that people who inject drugs (PWID) have a high success rate on hepatitis C virus (HCV) treatment, these individuals should not be restricted from receiving such medications, according to researchers behind a new meta-analysis of hep C treatment studies including PWID as participants. Publishing their findings in The Lancet Gastroenterology and Hepatology, researchers included 38 studies representing 3,634 participants in their meta-analysis. Twenty-one studies with a total of 1,408 participants included those with recent injection or noninjection drug use; of these a total of 97.5 percent completed hep C treatment, and 87.7 percent achieved a sustained virologic response 12 weeks after completing therapy (SVR12, considered a cure). Thirty-six studies with a total of 2,987 participants included those receiving opioid medication treatment. Of these, 97.4 percent received HCV treatment and 90.7 percent of these individuals were cured. Eight studies with a total of 670 participants included those with recent injection drug use. Of these, 96.9 percent received HCV treatment and 87.4 percent were cured of HCV. Older participants were more likely to be cured and less likely to be lost to follow-up than younger ones. Those in clinical trials were about twice as likely as those in observational studies to be cured.

Highly Effective Hep C Vaccine Unlikely by 2030 Given the inadequate state of current global funding for 35 leading diseases that affect the world’s poor, the globe is unlikely to see highly effective vaccines for HIV, malaria, tuberculosis (TB) or hepatitis C virus (HCV) by 2030. However, researchers are hopeful that two HIV vaccines currently in advanced trials may reduce the risk of the virus by at least 50 percent, which would probably justify a worldwide rollout that could make a major dent in the epidemic. Those trials are expected to complete by 2021. Publishing their findings in Gates Open Research, researchers reviewed the pipeline of products—including diagnostics, treatments and vaccines—for 35 so-called neglected diseases. As of August 2017, they identified 538 product candidates that met the criteria for inclusion in their research. To produce a robust response to neglected diseases by 2030, the global research budget would need to about triple, from about $3 billion annually to nearly $9 billion. Unfortunately, global investment in such research has been declining since the 2008 financial crisis (with the exception of a recent burst of

Ebola-related funding), having soared during the early 2000s. Funders in the United States, including the National Institutes of Health and the Bill & Melinda Gates Foundation, currently pick up the tab for about half of the $3 billion figure. Given current spending on such products, the researchers projected that there would be few launches of complex chemical entities and that launches of highly efficacious HIV, tuberculosis or malaria vaccines would be unlikely by 2030. The study estimated that about 125 new products for neglected diseases would likely hit the market during the next dozen years, including more effective combination therapy for hep C, TB and malaria. HIV will not see a fully efficacious vaccine but will likely see 26 products approved, while HCV will see eight products approved. Currently, there are 99 HIV products in the pipeline, including 41 vaccine candidates, while 16 HCV-related products are under investigation, including four vaccine candidates. Moving the HIV products through the pipeline would require $2.3 billion while $541 million would be needed for the HCV products. WINTER 2018 HEP 5


Got Kidney Disease? You Can Still Beat Hep C People with hepatitis C virus (HCV) who also have chronic kidney disease (CKD), a group for whom the virus was once considered hard to treat, can now do well on direct-acting antiviral (DAA) therapy. Researchers analyzed medical records data on those recently treated for hep C at Veterans Health Administration health care facilities. Out of more than 13,500 people who received Harvoni (ledipasvir/ sofosbuvir) and nearly 4,000 who received the Viekira regimen (ombitasvir/ paritaprevir/ritonavir; dasabuvir), a respective 14 percent and 9 percent had Stage 3 CKD and a respective 1 percent and 3 percent had Stage 4 or 5 CKD. Sixty-eight percent of those given Harvoni and 74 percent of those given the Viekira regimen completed treatment; 98 percent of each group was cured of hep C. More advanced CKD was not associated with a lower likelihood of achieving a cure. Of those who started treatment with an eGFR of greater than 60, an indication of higher kidney function, 30 to 38 percent experienced a greater than 10-point drop. Among those with Stage 4 or 5 CKD, zero to 6 percent experienced a greater than 10-point drop in their eGFR. Rates of grade 3 or 4 anemia were higher among those with Stage 4 or 5 CKD. Ribavirin did not appear to affect the rates of such severe anemia. “We found the newer all-oral directly acting antiviral regimens to be as effective in eradicating HCV in the CKD population as in the non-CKD population,” says the study’s lead author, Adeel Ajwad Butt, MD, MS, a professor of medicine at Weill Cornell Medical College in New York City. “This study provides assurance to patients and providers that patients with CKD can be now be effectively treated with the newer all-oral DAA regimens.”


People waiting for a kidney transplant may do well to receive such an organ from a donor with hepatitis C virus (HCV). A recent small study found that doing so and then treating the recipient with direct-acting antivirals (DAAs) was safe and effective. Researchers conducted a study of 20 HCV-negative individuals who received kidney transplants from 15 different HCV-positive donors. After they received their kidneys, the participants were treated with the HCV regimen Zepatier (grazoprevir/ elbasvir); all were cured of the virus. Everyone was also treated with standard immunosuppression therapy to prevent rejection of the new organ; no one experienced organ rejection. None of the participants experienced serious adverse health events definitively associated with hep C or with treatment of the virus. The study authors compared the results of eGFR and creatinine level lab tests (each an indication of kidney function) six and 12 months post-surgery among the participants with test results from a group of matched HCV-negative kidney recipients. The results were comparable between the two groups. “[This process] has the potential to expand the donor pool if these data are validated in larger trials with longer follow-up,” says one of the study’s heads, David S. Goldberg, MD, an assistant professor of medicine and epidemiology at the Perelman School of Medicine at the University of Pennsylvania.


HCV-Positive Kidney Transplants

Curing Hep C May Dial Back Liver Damage People who cure their hepatitis C virus (HCV) with direct-acting antiviral (DAA) treatment may experience a regression in their liver fibrosis as a result. Spanish researchers conducted a study that included 260 people with HCV who underwent DAA treatment, analyzing changes in their liver fibrosis according to the Fibroscan assessment method. A total of 246 of the individuals were cured and were included in the study’s analysis. Forty-two percent of the participants were coinfected with HIV. Fifty-seven percent had advanced liver fibrosis. The median Fibroscan score among all participants was 11 kilopascals, indicating moderate fibrosis. At the 12-week posttreatment mark, the participants experienced a median drop of 2.1 kilopascals in their Fibroscan scores. Forty percent of the participants experienced a significant drop in their Fibroscan score. Of those who started the study with advanced liver fibrosis, 52 percent experienced a significant drop, compared with 23 percent of those who started without fibrosis or with mild fibrosis. After researchers adjusted the data for various factors, they found that the only independent factor associated with liver fibrosis regression

after treating HCV was having a high initial Fibroscan score. “Despite improvements being more pronounced in the subset of patients with baseline advanced fibrosis or cirrhosis,” the study authors cautioned in their conclusion, “a large group of them persist with cirrhosis after being cured and warrant further clinical follow-up, including periodic screening for liver cancer.”

Supervised Injection Sites Supervised injection sites for people who inject drugs (PWID) are opportune places to offer hepatitis C virus (HCV)–related services and treatment, although many such opportunities are missed. In 2016, researchers surveyed 49 supervised drug consumption sites, including eight in the Netherlands, 17 in Germany, nine in Spain and seven in Switzerland as well as one site each in Denmark, France, Australia, Canada, Luxembourg and Norway. “To tackle HCV in people who use drugs, testing and treatment need to take place in

community and harm reduction settings,” says an author of the survey, Eberhard Schatz of Correlation, a harm reduction network in Amsterdam. Each site received an average of 80 visits daily. On a typical day, the sites had seven paid staff and one unpaid or volunteer staff member. Eighty percent of the sites had nurses, 78 percent had social workers, 44 percent had medical doctors on-site, 28 percent had health educators and 22 had peer counselors. Sixty-five percent of the sites offered testing for HCV on-site as well as pre- and post-test

counseling. About 80 percent of clients received such screening; 60 percent had the virus. Only two sites, or 4 percent of the sample, offered treatment for hep C on-site. One other site had plans to do so. Sites were more likely to offer HCV treatment if they had nurses or doctors on staff and if they offered opioid medication treatment on-site. WINTER 2018 HEP 7


Jackie Johnson photographed in New York

Living the Dream Health care advocate and aspiring actor Jackie Johnson finds himself in the spotlight after being cured of hepatitis C. By Tim Murphy Photography by Bill Wadman 8 HEP WINTER 2018


ackie Johnson, 42, has finally begun to live his dream.

Not only did he recently start working for Amida Care, a nonprofit Medicaid plan specializing in HIV that also covers his own health care, but he’s also pursuing his lifelong goal of being an actor. And after a stint living with a roommate in Brooklyn, he now has his own apartment in the Bronx. “My first week here, in 2014, I was pinching myself, asking, ‘Am I really here?’” he says. “My neighborhood looked just like the Brooklyn you see on TV!” However, getting cured of hepatitis C has been arguably one of the best things to happen to him since he moved to New York.

Born in Dallas, Johnson more or less grew up with his

cousins after his siblings died young. He caught the acting bug early and was always auditioning for different roles, including a part in the kid version of Michael Jackson’s “Bad” video. “It was always just me and my mom, who worked two or three jobs,” he says, so he learned to do the cooking. “Fried chicken, cornbread, spaghetti and Hamburger Helper,” he recalls. They were so financially challenged that they would wait to celebrate Christmas until after his mom got her income tax refund so she could buy presents. Growing up, Johnson would wake up with his mom at 3 a.m. She would go to work, and he would ride a bus to his grandmother’s place and go back to sleep there before waking up again to go to school. After high school, Johnson pursued his bachelor’s degree in business and then worked for several years in accounting at Sears and as a manager at Taco Bell. During that time, he tested HIV positive. Not long after that, he started experiencing extreme fatigue daily. “I thought it was from my HIV meds,” he says. But a doctor’s visit led to a hep C test—and a positive diagnosis in 2010. Johnson believes he contracted hep C when a friend presumably neglected to use a sterilized needle while giving him a tattoo. A doctor at the time told him that a liver screening showed no scarring and that the hep C treatment of the day was both heavy on side effects and suboptimal. “So I put my hep C on a back burner,” he says. “I didn’t smoke, I ate healthy and I didn’t drink at an alarming level.” His fatigue faded away.

Flatbush and needed a roommate. She showed him around the Brooklyn neighborhood and he instantly loved it. “Once I went into a bodega [a corner store] and someone bought me cookies,” he says. “The friend I was with said, ‘I’m from New York and that’s never happened to me.’ I’m meant to be here.” He soon landed a job at a Times Square bakery, rented his own Bronx apartment and connected to health care, rental assistance and other services via Housing Works, a longtime HIV services and advocacy agency, and Amida Care. “I came to New York knowing nobody and with no family, so Housing Works became my family here,” he says. “They connected me to everything I needed here in one day. They even bought me a haircut at the barber across the street. It would have taken me much longer if I’d tried to connect to all those city services myself.” “[Housing Works] did much more testing on my hep C than anyone had in Dallas,” he says. By that point, the hep C med Harvoni had arrived on the market and was showing great results with few side effects. After three weeks on treatment, his hep C viral load was undetectable. “It was mind-blowing to hear the doctor say the labs showed nothing,” he recalls. He stayed on the meds another three weeks, suffering no side effects, and has been hep C– free ever since.

“I don’t take anything for granted. I work hard and enjoy the simple things.”

During that time, Johnson was also cooking up plans to

move to New York City. He was saving up money, researching health care options in the Big Apple and seeking roommates. “I wanted a better life for myself,” he says, “so I prayed about it, got my signs from God and got on a plane.” He moved in with a woman he found online who lived in

Johnson has also thrown himself

into getting out the word that today’s hep C treatment is usually easy to tolerate and highly effective. He was a hep C advocate for the Bronx’s Brightpoint Health. “Clients there would say, ‘I don’t believe the doctors. How can they say this works?’ And I would say, ‘Believe me, because I’ve been there.’” Now, as a member-services staffer at Amida Care, he has even more opportunities to share his personal story with others facing similar challenges. At Amida, he organizes healthy cooking, fitness and art classes as well as two big annual parties for the health plan’s 7,000 members in all five boroughs. “I’m so excited!” he says. “I wanted to work [at Amida Care] as soon as they started covering me, but I first needed to get to know New York better.” “Jackie’s a perfect fit for us,” says Amida Care spokesperson Shakira Croce. “He speaks so wonderfully about his experience, and it’s powerful when people who might have had similar experiences hear his story. It can help empower them to take control of their own health.” Johnson loves the life he has built for himself in New York since moving from Texas. “I don’t take anything for granted today,” he says. “I work hard and enjoy the simple things. I’m excited all the time!” ■ WINTER 2018 HEP 9

Profile for Smart + Strong

HEP Winter 2018  

Hep magazine provides honest, cutting-edge information and education for people living with viral hepatitis, including hepatitis C (HCV), he...

HEP Winter 2018  

Hep magazine provides honest, cutting-edge information and education for people living with viral hepatitis, including hepatitis C (HCV), he...