HepatitisWA Newsletter March 2017 by HepatitisWA

Newsletter issue 18 | March 2017

Hepatitis C Treat it. Beat it.

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Ask us about hep C treatments PERSONAL PERSPECTIVE | GOING VIRAL | HEALTH & LIFESTYLE

MARCH 2017

Contents

PERSONAL PERSPECTIVE

COMMUNITY NEWS

PROMOTIONS

06 Steve’s Story

04 Message from HepatitisWA’s Management

20 Deen Clinic Services

A personal perspective by Steve Fragomeni.

10 Hepatitis B and C testing The World Health Organization Guidelines The World Health Organization has published new guidelines on testing for chronic HBV and HCV infection.

11 Hepatitis: Know The Facts Know the main routes of transmission of hepatitis B and C and what you can do.

of the past, with Australia well on the way to eradicating the potentially deadly virus within the next 10 years, researchers say.

Should people with hepatitis C be extra cautious with supplements? (US Article)

WASUA’S DOMAIN HEALTH & LIFESTYLE 16 Disclosure of your hep C status Reproduced with permission

22 teSTIng, teSTIng, ABC Written by Sarah Grant

(Outreach Team Leader)

from Hepatitis Australia.

at www.kristineskitchenblog.com

Eating Plan: High, Protein, High Energy Diet - For Advanced Liver Disease

Published by GESA (Gastroenterological Society of Australia).

Written by Benjamin Ryan for Hep Mag.

06 2

24 Connect with HepatitisWA

hepatitis.

18 Recipe: Kale Superfood Salad Recipe from Kristine’s Kitchen

12 Hepatitis C will be eradicated in Australia by 2026 Hepatitis C may soon be a thing

21 HepatitisWA Services

08 Going Viral A round-up of articles on viral

Features

Written by Sally Rowell.

HepatitisWA Newsletter // March 2017

LETTER FROM

tHe eDItoR With all the positive developments of new hepatitis C treatments through the Pharmaceutical Benefits Scheme (PBS), Australians continue to welcome more drug listings, providing free treatments to people living with hepatitis C. Researchers say that hepatitis C may soon be a thing of the past as they predict that the virus will be eradicated within the next 10 years, (our feature on page 12). The World Health Organization has published new guidelines on testing for chronic HBV and HCV infection, and you can check out the World Hepatitis Alliance’s quick fact sheet on the main routes of transmission of hepatitis B and C and what you can do. We also feature a personal perspective of HepatitisWA’s own, Steve Fragomeni as he talks about his experience with hepatitis C and becoming cured. In our health and lifestyle section, we feature an article on “Disclosure of your hep C status”, a healthy and delicious Kale Superfood Salad recipe, and a sample high protein, high energy diet eating plan for people with advanced liver disease. Lastly, WASUA talks about their event “teSTIng, teSTIng, ABC”, which is a WASUA youth-based event for people aged 25 years and under.

Felicia Bradley

stay

connected

Editor

www.hepatitiswa.com.au

Newsletter Editor Felicia Bradley Graphic Artist Felicia Bradley Board of Management Executive Members Chairperson Ms Ursula Swan Vice Chairperson Dr Aesen Thambiran Treasurer Mr David Wilding Secretary Ms Carol Houghton Non Executive Members Mr Adrian Gallo Ms Max Taylor Ms Selena West Patron Dr Charles Watson Executive Director Frank Farmer Postal Address PO Box 67 Francis Street Northbridge, WA 6865 Information & Support Line Monday - Friday 9am - 5pm (08) 9328 8538 Metro 1800 800 070 Country Office 134 Aberdeen Street Northbridge, WA 6003 Telephone: (08) 9227 9802 Fax: (08) 9227 6545 Web: www.hepatitiswa.com.au Proof Reading Frank Farmer Sally Rowell Email the Editor resources@hepatitiswa.com.au

www.playthebloodrule.com www.facebook.com/HepWA www.twitter.com/HepatitisWA Opinions published in the HepatitisWA Newsletter are not necessarily those of the editor or of HepatitisWA (Inc). Information in this newsletter is not intended to take the place of medical advice from your GP or specialist. You should always get appropriate medical advice on your particular needs or circumstances. *Disclaimer: The copyright of external articles published in this newsletter remain with the original authors and publishers, unless otherwise stated.

HepatitisWA (Inc). HepatitisWA is a community based organisation which provides a range of services to the community in response to viral hepatitis, particularly hepatitis B and C. Please contact us for more information, or make an appointment to stop by and talk with an appropriate member of our staff.

HepatitisWA Newsletter // March 2017

MESSAGE FROM ’s MANAGEMENT

We hope that our readers have had the opportunity to have a break over the festive season and we welcome you to the first edition of our 2017 newsletter. The biggest news in hepatitis continues to be around the new hepatitis C treatments which has included the listing of more drugs on the Pharmaceutical Benefits Scheme which provides the treatments free to people living with chronic hepatitis C. A new report by the Kirby Institute at the University of NSW Monitoring hepatitis C uptake in Australia, found that the total number of Direct Acting Antiretroviral (DAA) initiations in 2016 (March-December) is estimated to be between 30,390 and 33,390. From March to September 2016 in WA, 1670 people initiated the treatment which represents 8 percent of people living with hepatitis C in this state. This is slightly lower than the 11 percent average in the rest of Australia. It is very pleasing to note that WA general practitioners are amongst the nation’s most proactive when it comes to prescribing the new treatments. This is reflected in the increase of prescribing by GPs in WA from 4 percent in March to 23 percent in September. Here at HepatitisWA we have increased our hepatitis C treatment clinics to 3 per fortnight and these clinics are staffed by very experienced GP’s, a Gastroenterologist and a Nurse Practitioner. Since September when our clinic first opened we have seen several people clear the virus, and have a number of people who are currently on track to clear the virus, with more people being worked up to commence treatments. We were very pleased to see the Australian Medical Association (AMA) calling for Needle and Syringe Programs (NSPs) to be introduced into prisons and other custodial settings to reduce the transmission of Blood Borne Viruses (BBVs). AMA President Dr Gannon explained in their position statement on BBV’s that with the introduction and availability of the new hepatitis C treatments on the subsidised Pharmaceutical Benefits Scheme (PBS), now was the time to identify people with undiagnosed BBVs. He went on to say that “All the evidence shows that harm minimisation measures, such as access to condoms and lubricant, regulated needle and syringe programs, and access to disinfectants such as bleach, protects not just those in custody, but prison staff too. “It also reduces the likelihood of someone being discharged from prison with an untreated BBV, and spreading it in the outside community”. “The AMA supports NSPs as a frontline approach to preventing BBVs. Prison-based NSP trials have been shown to reduce the risk of needle-stick injuries to staff, and increase the number of detainees accessing drug treatment, while showing no adverse effect on illicit drug use or overall prison security”. 4

HepatitisWA Newsletter // March 2017

by Sally Rowell

HepatitisWA Newsletter // March 2017

Never underestimate the power of an honest and healthy relationship with your GP.

t’s never a good time to have to deal with a hep C diagnosis, but for anyone who has been told this recently, or may have been dealing with it for a long time and have been afraid to act on the diagnosis, there has never been a better time to take action. This is my very brief story. I was positive for 5 years. I am now free of the virus, and it was the easiest thing I have ever done to improve my health.

The doctor gave me my status news in 2011. I was in shock; I felt disbelief; I felt ashamed. I don’t think that I’m alone in reacting like that. But, these feelings were perplexing for me. I’d been working in the community services sector dealing with blood borne viruses, helping people deal with precisely this kind of news, for nearly a decade. It’s not like I hadn’t heard about, learned about and participated in hepatitis C discussions. I had a good understanding of how the virus is transmitted, how the virus progresses, and the likelihood that I will live with it. 6

HepatitisWA Newsletter // March 2017

I thought to myself, I know what this is all about! I can handle this news, no problem! Funny how in the wee small hours of the morning when you’re alone the reality settles in and all that bluff and bluster can vanish and the negative thoughts take control. Thankfully, I have the best GP. I have faith he has his finger on the pulse about what to do with these complex blood-borne conditions, and he knows what is on the horizon when it comes to future treatments. If I had a meltdown about my diagnosis, he was there to put things into perspective. When I had my doubts about what actions to take, he was there to show me that there most definitely would be a light at the end of the tunnel. He told me straight, there will be hoops to jump through and bureaucracy to navigate, specialists insisting to move on with my treatment, but he asked me to wait! “Wait for what?” I would ask. “Wait for a much better option than we have at present”, he would say.

peRsonAl peRspeCtive

STEVE’S STORY “Have I got a choice?” I would ask. “Yes, you absolutely do”, he would answer.

go down that track. Many people, including my GP, supported me in my decision to wait.

He was right. Never underestimate the power of an honest and healthy relationship with your GP.

I also dreaded seeing my assigned registrar at my assigned appointment at my assigned hospital hepatology department. I knew that whoever was on the hepatology rotation would briefly read my notes, read the recommendations and try to push PEGylated interferon... again. “What condition is my liver in?” I would ask. “Your LFTs are extremely high”, they would reply. “They have always been high. Is there a better option than PEGylated interferon?” I would enquire. “Not at the moment”, they would answer sheepishly. “I choose to wait,” I would conclude. I stuck to my guns, as this would go on for many an appointment with a number of very well-intentioned and learned doctors on that merry-go-round. I don’t hold this against these great health professionals. They were all fantastic people who only ever had improving my health foremost in their minds.

I am so glad that I waited. But it wasn’t a piece of cake. At times, my test results were off the charts. My general health wasn’t always the best. I didn’t realise exactly how fatigued I was caused by the hep C until I wasn’t fatigued anymore. I was managing my health by doing all the things that are recommended. They weren’t always the easiest things to do and at times it was tough. Giving up alcohol wasn’t as difficult as I expected, but it did change how I interacted socially with my friends. I didn’t realise how annoying some drunk people can be when I remained stone-cold sober. Gatherings at bars, clubs and parties became complicated as I had to defend my choice not to drink. It did impact on my social life because I would choose not to go to social things. Luckily, I am blessed with people who understood my hep C status, and who love and care for me deeply supporting me through all of this. They deflected the questions from others who pry so I didn’t feel embarrassed. Never underestimate the power of supportive and loving people in your life. They are incredible pillars in my life, but managing the journey medically would come down to me and what I decided. I was dreading the thought of going onto PEGylated interferon. I had known friends who have had that struggle. I’d seen them have the ‘flu’ for nearly a year. The negative reactions to this treatment, both physical and mental, seemed endless. I had already decided I didn’t want to

A few years on and my results stabilised, and I decided to self-determine how many appointments I had, when they occurred and what I was to do about my own treatments. Yes, you can do that! Taking control of my own health and making my own choices were all based on honest conversations with my health professionals, doing my own research and gathering the right knowledge from places that knew what was what. That most definitely included the great conversations I had with the staff at HepatitisWA. They made me aware of a new treatment that was on the horizon that would change everything.

That was not a cock-and-bull line they were trotting out, either. I was sceptical at first, not sure that these claims of an almost absolute cure were true. But, I would describe my experience of the new treatments to be miraculous. Once the new treatments came online, I worked with my GP to proceed. I’ll be up-front and say that the possibilities of side effects scared the proverbial out of me. So I quizzed my GP about that aspect of it. “Am I going to be sick for a year?” I would ask. “It is as easy as taking a Panadol”, he would say. “Really?” I would exclaim. “Absolutely!”, he would smile. “And I will be cured?” I would ask. “Ninety five percent chance of clearing the virus entirely”, he assured me. And he was right. So here I stand, 12 weeks of one-a-day tablets later, that has cleared the virus from my system. I feel more energised, more optimistic and proud of myself to have tackled this head-on. To anyone who is still wondering if they should try the treatment, I would say, consider it seriously. Talk about it with the health professionals that you trust. Educate yourself about it by talking with people who know and understand hep C and the treatments. Chat with others who have been through it and emerged on the other side. Discuss it with those of your loved ones who know your story and ask for their help along the way. Most importantly, decide for yourself. Never underestimate your power to take it on.

Written by Steve Fragomeni.

HepatitisWA Newsletter // March 2017

Going VIRAL A round-up of articles on viral hepatitis

100 Million people in

China have hepatitis b Or C, who says

EIJING – Around 100 million Chinese are infected with the hepatitis B or hepatitis C virus and half a million die every year of liver cancer, caused largely by this disease, the World Health Organization announced Saturday. The number of Chinese people infected with the virus are almost one third of the over 300 million people suffering from chronic hepatitis B or C worldwide, although less than 5 percent of them have been diagnosed or know that they have the disease, the WHO said in a statement. “Many people, especially those in low and middle income countries, don’t know they are infected, so they cannot access the right treatment,” said Marc Bulterys, who heads the WHO’s Global Hepatitis Programme. This week, the WHO approved its first set of global guidelines on tests for the detection of hepatitis B and C, which simplify the procedure to make it faster in isolated populations and areas with a high incidence of the disease. The organization said China “has made some tremendous progress towards prevention and control of viral hepatitis.” 8

However, the World Health Organization representative in China, Bernhard Schwartlander, stressed that the country “has a huge burden of both hepatitis B and C” as approximately 7 percent of its population is infected or suffers from the disease and “yet many people are still unaware.” Schwartlander added that a detection of hepatitis B followed by early treatment could check the progression of the disease and even reverse liver damage. Moreover, hepatitis C is curable thanks to a new generation of antiviral drugs which have already cured over a million people throughout the world. The guidelines for tackling disease were released this week during a meeting in Shanghai on liver medicine with specialists from the Asia-Pacific region.

LATIN AMERICAN HERALD.. Feb 21, 2017 Latin American Herald tinyurl.com/hepatitis-in-china

HEPATITIS E WARNING

FOR passengers ON Melbourne cruises

assengers who had recently boarded two cruises from Melbourne have been warned that they were exposed to hepatitis E while aboard.

The Department of Health and Human Services on Wednesday alerted passengers who were travelled on the Golden Princess between February 8-15 that an on board crew member had been suffering the illness at the time. Victoria’s Chief Health Officer Professor Charles Guest said passengers were at “low risk” of infection, and were unlikely to become unwell as a result of the possible exposure. Hepatitis E is an illness of the liver that usually produces a mild disease. Symptoms can include fever, tiredness, nausea, vomiting, abdominal pain and also a loss of appetite.

NINE 9NEWS.. Feb 23, 2017 9 News tinyurl.com/hepatitis-e-warning

HepatitisWA Newsletter // March 2017 Disclaimer: The news articles and excerpts displayed in the HepatitisWA Newsletter remain the copyright of the original authors and news publications.

COMMUNITY NEWS

BANKSTOWN-LIDCOMBE

HOSPITAL CONTACTING PARENTS OVER HEP B VACCINATION

ankstown-Lidcombe Hospital is contacting more than 280 mothers who recently delivered babies at the hospital, after it was discovered some infants were given ineffective hepatitis B vaccinations. The hospital has contacted mothers who gave birth at the hospital between November 29 2016 and January 22 this year, after a batch of hepatitis B vaccinations were not stored at the correct temperaturemaking the vaccine ineffective. Six infants have been ordered back to the hospital to receive new doses of the vaccine, while 282 other mothers who gave birth at Bankstown-Lidcombe Hospital have been contacted to have their children vaccinated again. The hospital has assured parents the vaccine was not harmful.

NINE 9NEWS.. Jan 31, 2017 9News tinyurl.com/bankstown-lidcombe-hospital

NGOs, Advocacy groups key to eliminating hepatitis

ANILA – Stigma and marginalisation of people living with viral hepatitis are among barriers to a global plan to eliminate the disease as a public health threat by 2030, a conference in Shanghai, China, heard this month.

A highlight of the conference — convened by the Asia Pacific Association for Study of the Liver (APASL), the Coalition to Eradicate Viral Hepatitis in Asia Pacific (CEVHAP), the World Hepatitis Alliance and the Chinese Foundation for Hepatitis Prevention and Control — was a forum participated by 25 NGOs from 13 Asia Pacific countries. “The NGO sector involved in viral hepatitis provided a unique perspective in representing the needs of other key stakeholders involved in the elimination of viral hepatitis,” says Jinlin Hou, president of APASL and chair of the department of infectious diseases at the Southern Medical University in China. “They provide the on-the-ground, lived experience and the information that ensures that services provided by clinicians are effective and efficient.” Viral hepatitis is a silent epidemic that kills 1.4 million people each year globally. The Asia-Pacific region accounts for a million of those deaths, a toll three times as much from HIV/AIDS. Around the world, 400 million people live with chronic hepatitis, and that number may rise as more people are screened and tested. It was in May 2016 that the WHO released the Global Heath Sector Strategy on Viral Hepatitis and set the goal to eliminate hepatitis. APASL has been providing resources to NGOs engaged in this cause, says Hou, adding that their inclusion in the conference agenda was inevitable.

“It was a milestone for practitioners to come together vowing to fight hepatitis as part of the Sustainable Development Goals,” Dee Lee, CEVHAP member and chief of the Inno Community Development Organisation, tells SciDev.Net. “The misunderstanding and dissent between patient advocacy groups and physician institutes can’t be dissolved through a single meeting, but it has already established a base for mutual understanding.” Lee says partnerships have been formed with participating organisations. For instance, Inno is now talking and engaging with Yellow Warriors from the Philippines and Stanford Asia Liver Center in the US to develop an anti-discrimination strategy for the workplace. If efforts to eliminate the disease are to succeed diagnosis and treatment will need to be scaled up, delegates to the conference concurred. Infrastructure and trained health care workers providing affordable treatment to those living with viral hepatitis were also seen as prerequisites. “A comprehensive approach is the only way to tackle the difficulties of ending hepatitis and that was apparent at the meeting,” says Lee. “The idea will be integrated into our project design to find appropriate stakeholders to bridge the resources and advantages.”

GMA NEWS.. Feb 27, 2017 GMA News. tinyurl.com/gma-hepatitis HepatitisWA Newsletter // March 2017

FEATURE

Hepatitis B and C testing The World Health Organization guidelines

he World Health Organization has published new guidelines on testing for chronic HBV and HCV infection, supporting its Global Health Sector Strategy on Viral Hepatitis 2016-2021 and complementing guidance on prevention, care and treatment of chronic HCV and HBV infection published in 2016 and 2015, respectively. They represent full documentation to underpin a related Policy Brief published last November. The guidelines lay down a public health approach to strengthening and expanding current testing practices for these infections and are intended primarily for public health agencies in low and middle-income countries (LMICs), particularly in Asia and Africa, where the national burden of infection is disproportionately high and where hepatitis testing programmes are not yet well developed or where quality systems are lacking. The introduction to the guidelines states, “Despite the high global burden of disease due to chronic hepatitis B and C infection, and the advances and opportunities for treatment, most people infected with HBV and/or HCV remain unaware of their infection and therefore frequently present with advanced disease. The extent of this hidden burden is poorly documented, and largely based on limited data from higher-income settings. However, in low-income settings, it is estimated that less than 5% are aware of their diagnosis. This contrasts with the considerable recent progress in HIV testing coverage, whereby now more than half of all people living with HIV globally are aware of their status.”

The new guidelines include sections covering recommended components of national strategy for LMICs, including: • testing approaches – who to test for chronic hepatitis B and C infection • testing strategy – how to test for chronic hepatitis B and C infection • interventions to promote uptake of hepatitis testing and linkage to care • implementation issues with regard to product selection and procurement, validation of test kits, and quality assurance. In high-prevalence countries, the guidelines strongly recommend that testing be offered both to individuals within high-seroprevalence groups and those who have a history of exposure or high-risk behaviours for HBV or HCV infection. Thus for chronic HBV, the guidelines strongly recommend testing for pregnant women, some other specified risk groups, and blood donors. For chronic HCV, they recommend focused testing for adults and adolescents who are members of a high-prevalence group, and for adults and children “with a clinical suspicion of chronic viral hepatitis”.

HepatitisWA Newsletter // March 2017

Source: Martina Tesser, Emergency Live Available at http://tinyurl.com/hep-testing-guidelines (27 Feb 2017).

HepatitisWA Newsletter // March 2017

hepatitis c

will be eradicated in Australia by 2026 RESEARCHERS PREDICT

epatitis C may soon be a thing of the past, with Australia well on the way to eradicating the potentially deadly virus within the next 10 years, researchers say.

Researchers say the Federal Government’s aggressive approach to funding treatments and cures is paying off, with the cure rate lifting close to 100 percent. More than 30,000 people were treated for hepatitis C last year, according to a report published by the Kirby Institute at the University of New South Wales. The report found Australia was in a position to eradicate the disease by 2026. The Institute’s Professor Greg Dore said the Federal Government is largely responsible. “Most countries, because of the high prices of these new treatments, they’ve had to restrict the treatments to those with very advanced liver disease,” Professor Dore said. “But Australia’s been able to provide access to people across the disease spectrum.” “Whether you’ve got major liver damage, or no significant liver damage, you can come forward and access treatment.”

12 HepatitisWA Newsletter // March 2017 Disclaimer: This news article remains the copyright of the original authors and news publications at ABC News. Image licenced via Photodune. © All Rights Reserved anthoptic.

FEATURE He said the cure rate for hepatitis C “After each test, that was a troubled time had gone from 10 percent to almost because you are hoping that your test 100 percent in two decades. wouldn’t come back worse than the last one,” he said. “We need to keep the momentum up and there are a lot of strategies that are Last year’s rollout of powerful antiviral being put in place to do that,” Professor treatment Zepatier — now available on Dore said. the Pharmaceutical Benefits Scheme — cured Emmanuel of hep C. “[These include] rolling out better treatment programs in methadone “I feel like I have a lot more energy, clinics, better programs in prisons, but also I don’t live with that fear of raising awareness within the discrimination anymore.” community of people affected by hepatitis C about these new therapies.” He said the new developments in hepatitis C treatment felt like a miracle. DEVELOPMENTS IN TREATMENT “It’s quite magical to think that we haven’t ‘A MIRACLE’ even got a cure for the common cold, and yet Emmanuel, who has had hepatitis C we’re coming up with cures for more serious for close to 30 years, was 22 when illnesses, and I just think that’s amazing.” he was diagnosed. But in spite of the high cure rate, He said the initial diagnosis came as Professor Greg Dore said access to a surprise in spite of his drug use. clean injecting equipment remains essential. “I was a bit shocked because even though I was a needle user at the “While we’ve got time, I’d never shared a needle,” these incredible he said. “But I was sharing equipment such as spoons, and back then we didn’t know much about hep C.” The blood-borne virus, which attacks the liver, forced Emmanuel to reassess his life. He quit drugs and drinking, and underwent regular testing for decades to make sure his liver was still functioning.

treatments, which is amazing, we shouldn’t forget prevention strategies that Australians had in place for the last two decades.”

BY ABC NEWS.. Feb 23, 2017 ABC News tinyurl.com/hep-c-eradicated

HepatitisWA Newsletter // March 2017

US ARTICLE

SHOULD PEOPLE WITH

HEPATITIS C

BE EXTRA

CAUTIOUS WITH SUPPLEMENTS?

Herbal and dietary supplements can sometimes cause liver injury, which may be particularly problematic for those with a hep Câ&#x20AC;&#x201C;damaged liver. Herbal and dietary supplements are booming in the United

Herbal or botanical supplements; vitamins, minerals, amino

States. About a third to half of adults take them, spending

acids and protein supplements; and performance-enhancing

over $35 billion annually, up from $10 billion in 1994.

supplements, some of which may contain some form of illegal anabolic steroids, all fall under the supplements umbrella.

As a general rule, consumption of these products is not backed

The biggest liver-injury culprits are anabolic steroids, green

up by science. There are indeed some clear, proven health

tea extract and, most of all, the rather broad category of

benefits of taking supplements, in particular if someone has

nutritional supplements that contain multiple ingredients.

a mineral or vitamin deficiency. However, recent research

Multi-ingredient supplements suspected of causing liver

suggests that most people taking supplements reap no

injury present a great challenge for researchers because

benefits at all.

it may be difficult to identify individual ingredients and ultimately determine which are likely responsible for the ill

Some supplements may in fact be hazardous. About 20

effects to the liver.

percent of the cases of liver injury in the United States result from supplement use, a proportion that is expanding along

People suffering from supplement-prompted liver injury

with such productsâ&#x20AC;&#x2122; overall popularity.

typically experience inflammation of the organ so severe that it does not function properly. They may experience

For individuals living with hepatitis C virus (HCV), potential

jaundice (a yellowing of the skin and eyes) and develop

sources of harm to the liver in addition to the virus are

confusion. Usually, such effects occur about one to four

of particular concern. For example, physicians tend to advise

months after an individual starts taking a product and resolve

their patients with hep C not to drink alcohol at all or to

within one to two months.

at least cut back as much as they can to avoid accelerating the liver damage that the virus can cause. 14

HepatitisWA Newsletter // March 2017

Image licenced via iStock. ÂŠ 2017

FEATURE Victor J. Navarro, MD, a liver specialist at Einstein Healthcare Network in Philadelphia, is the lead author of a new paper in the journal Hepatology that summarizes a recent symposium of researchers in which they examined how herbal and dietary supplements may raise the risk of harm to the liver. Although the paper does not address hep C specifically, Navarro says that if people with hep C do not have evidence of liver damage, including fibrosis (scarring) or cirrhosis (advanced scarring), they are at no more risk of supplement-prompted liver damage than the general population. As for HCV-positive individuals who do have fibrosis or cirrhosis, they may be at risk of a more severe impact to the liver from supplements. It’s not that supplement-prompted injury to the liver is any more likely among them, according to Navarro, but that the consequences could be worse if they do experience such an outcome. When weighing taking supplements, Navarro advises, “First, the question is whether there’s a real need,” such as a vitamin deficiency. According to Navarro, “The problem is [if supplements] are not prescribed by a physician the labels may not be accurate, and they may contain adulterants, things that are either pharmaceutical or nonpharmaceutical stuff, and we don’t know the effect on the body; they’ve never been tested for safety in humans. The other issue is that people may see them as safe because they’re so readily available, so they take too much.” The cloud of mystery surrounding supplements is a by-product of the controversially lax regulations of such products that manufacturers enjoy in the United States. Under the 1994 Dietary Supplement Health and Education Act, federal law classifies supplements as foods as opposed to drugs and considers them safe to consume unless proved harmful. While drugs are registered with the U.S. Food and Drug Administration (FDA), supplements are not, leaving the federal agency with limited capacity to advise the public on the safety of their use. Additionally, manufacturers do not always print all the ingredients of a supplement on the product label or provide information on ingredient concentrations or purity. Supplements manufacturers are also not required to prove that their products are effective at treating health conditions, although they are not allowed to make specific medical claims, such as stating that a product lowers cholesterol. They can, however, more generally tout a product’s benefits, by saying, for example, that it enhances sexual pleasure or liver health.

Although a 2007 federal law requires supplements manufacturers to report serious adverse health reactions to their products to the FDA, such problems are likely quite underreported, according to the recent Hepatology paper. The FDA also lacks the teeth to respond aggressively to concerns about supplement safety. When it comes to counseling people with hep C about specific supplements, Navarro strongly advises against the use of steroids, saying, “There’s no way to guide people on safely using [them].” Research has linked anabolic steroids to liver injury that leads to a prolonged period of jaundiced skin, usually about one to six months after an individual starts taking one or a performance enhancement product containing such a steroid. Green tea extract, which manufacturers extoll as a weight-loss aid and antioxidant, has become a very popular supplement. The science behind these claims is hazy at best and any concrete findings come only from laboratory studies—research conducted in neither humans nor other animals. According to Navarro’s recent paper, actual human studies of green tea consumption among “have not demonstrated an effect on weight loss, although small studies have suggested a trend.” Although liver injury resulting from green tea extract is rare, it can be serious. In one long-running study published in Hepatology in 2014 and also helmed by Navarro, those who suffered liver injury prompted by green tea extract usually experienced the health problem within one to three months of starting the product. Typically, the liver injury eventually resolved on its own. However, up to 10 percent of such cases may be fatal. In some instances, contamination of a supplement may be the reason it leads to liver injury. Toxic elements may be to blame, but supplements may also contain unknown herbs or illicitly include conventional Western drugs, such as erectile dysfunction medications, nonsteroidal anti-inflammatory drugs (NSAIDs), statins (used to lower cholesterol) and corticosteroids. There have also been examples of specific products causing an outbreak of liver injury, as was the case in Hawaii in 2013 with a weight-loss and muscle-building product called OxyELITE Pro. Ultimately, the state department of health identified 36 people who took the product and experienced liver injury along with jaundice. One person died and two others underwent liver transplants. Ultimately, the manufacturer pulled the product. All this notwithstanding, Navarro believes that when it comes to the supplements at the average grocery, drug or health food store most are safe if used as directed.

Source: “Should People With Hepatitis C Be Extra Cautious With Supplements?” by Benjamin Ryan for Hep Mag. Available at www.hepmag.com/article/people-hepatitis-c-extra-cautious-supplements (19 January 2017)

HepatitisWA Newsletter // March 2017

HEALTH & LIFESTYLE

Disclosure of your hep C status...

isclosure means giving personal or sensitive information to other people – in this case, telling people you have hepatitis C. For some people disclosing that they have hepatitis C is not easy. Others may be more comfortable with disclosing.

Telling people that you have hepatitis C can be daunting. You may be worried about how those you tell will react and that you will be treated differently or discriminated against once people know you have hepatitis C. There can also be benefits to telling people you have hepatitis C. Disclosing can allow others a greater understanding of your health and enable friends and family to be a source of support. In most situations, whether or not to disclose that you have hepatitis C is entirely up to you. In making the decision whether or not to disclose, it may help to consider how the person or people you disclose to may react, how this may affect you and how you might deal with any negative reactions. Points to consider if you have decided to disclose

• It can help to find out as much

as you can about hepatitis C before you tell others. Providing people with accurate information about hepatitis C can help correct any misconception they may have about hepatitis C and people with hepatitis C. • Some people find it useful to practice disclosing in their mind or to a friend, confidant, counsellor or hepatitis worker, before disclosing to others in their life. • There are better times than others to share with someone new information about yourself. It is important that you have the discussion when both of you can give the subject time and attention. • If possible, have a supportive person/people you can easily contact when you are disclosing to someone important to you. Sometimes you can need support whether the person you disclose to has a negative or positive reaction. • It can be a shock for friends or family to find out that you have hepatitis C and it’s important to give the person time to come terms with this new information. It may help to give them a contact for information, such as HepatitisWA’s Hepatitis Helpline (08) 9328 8538 (Metro) or 1800 800 070 (Country). Remember that people may react differently when you tell them you have hepatitis C. If the outcome is a negative one it is important to remember that this is not a reflection on you and you are not responsible for their reaction. Reproduced from Hepatitis Australia. Image licenced via 123RF. © All Rights Reserved Archivio Fotografico. 16 Source: HepatitisWA Newsletter //with Marchpermission 2017 Available at www.hepatitisaustralia.com (20 Feb 2017) www.hepatitisaustralia.com/disclosure

When do I have to disclose? • •

•

There are a small number of instances when you may be required by law to tell others that you have hepatitis C. You are required to disclose your hepatitis C status in the following circumstances: If you are giving blood to the blood bank and you know you have hepatitis C, you are required to disclose this to them and your blood will not be accepted for donation. When blood is donated it is also screened for a range of infections, including hepatitis C. You may also be required to disclose if donating bodily organs or other bodily fluids, such as sperm. If you are a health care worker who conducts exposure prone procedures and you have hepatitis you may be required to notify your employer. Disclosure requirements differ from state to state. HepatitisWA or the local health department will be able to provide you with more information about local requirements. Some insurance policies, particularly life insurance, require that you disclose any infections, disabilities or illnesses you have that might influence the insurance company’s decision to insure you. If you don’t disclose this information it may affect future claims you may make. Be sure to read all insurance policies carefully and seek advice if you feel you need to. If you are a member of the Australian Defence Force and you have hepatitis C, you will have to disclose this. You may be required to leave the forces if you have hepatitis C, although this is determined on a case-by-case basis. You are also required to disclose any existing medical conditions on application to enter the Australian Defence Force.

Do I need to disclose to sexual partners? •

•

Hepatitis C is transmitted via blood-to-blood contact and is not classified as a sexually transmissible infection. In rare cases where hepatitis C may be passed on during sexual contact, it is most likely to be through blood-to-blood contact. Where there is a risk of blood-to-blood contact during foreplay or sex, or where there is a risk of the transmission of sexually transmissible infections, it is recommended you practice safer sex. Because of the low risk of infection during sex, if you are practicing safe sex, whether or not to disclose to a sexual partner is your choice.

Do I need to disclose to healthcare workers? • •

•

You do not have to tell any healthcare worker that you have hepatitis C unless you intend to donate blood, other body fluids or body organs. All healthcare workers are required to follow standard infection control procedures. You may wish to consider whether disclosing that you have hepatitis C will affect the quality of care you receive. There have been some reported cases of healthcare workers discriminating against people with hepatitis C and you may decide not to disclose if your quality of care isn’t going to be affected by your hepatitis status. Some medications may be damaging to a liver that is affected by hepatitis C and if you are given any medications it is in your best interest to ask about the likely affect on your liver.

Should I disclose at work? • •

•

• •

Unless you work in, or are thinking of working in, the Australian Defence Force or are a healthcare worker who performs exposure prone procedures you do not have to tell your employer or anyone you work with that you have hepatitis C unless you want to. When applying for a job you may be asked to fill out a pre-employment form that asks questions about your health. You do not have to answer any questions about hepatitis C unless it is necessary to determine if you can do the essential requirements of the particular job. An example could be where your position involves participating in ‘exposure prone’ medical procedures. Occupational Health and Safety laws state that employers must provide easy access to first aid materials and must treat all blood spills in the workplace as if there is an infection present. If you are unsure or concerned about the quality of first aid and infection control procedures at your work you may wish to raise this with your employer. There are many cases in which people with hepatitis C have been discriminated against in the workplace. However there may be benefits for you to disclose, such as the ability to arrange your working conditions to suit your health or treatment regime more effectively. Any information that you give to your employer or other people you work with about your health is 17 HepatitisWA Newsletter // March 2017 private and confidential and is not permitted to be passed on without your permission.

EASY

ERVES

HEALTH & LIFESTYLE

ALTHY HE

KALE SUPERFOOD SALAD w/quinoa & blueberries This Kale Superfood Salad packs a nutritional punch! Quinoa, blueberries, and avocado bring lots of flavor to this healthy make-ahead lunch! Ingredients

For the salad • 1 cup quinoa • 1 large bunch (about 6 cups) kale, tough stems removed and chopped • 15 ounce can chickpeas, rinsed and drained • 1 cup blueberries • 4 ounces goat cheese, crumbled • ½ cup sliced almonds • 1 avocado, peeled, pitted, and chopped For the dressing • ¼ cup extra virgin olive oil • ¼ cup lemon juice • 2 tablespoons honey • 1 ½ teaspoons Dijon mustard • a bit of black pepper

Prep time 10 minutes

* Make-ahead instructions: Salad will last for 3 days in the refrigerator, making it a great option for make-ahead lunches. I like to store the almonds and avocado separately, and add them right before serving.

METHOD

1. Rinse and drain the quinoa. Place quinoa and 2 cups water in a small saucepan and bring to a boil. Cover, reduce heat to a low simmer, and cook for about 15 minutes until water is absorbed. Transfer to a large bowl to cool. 2. Meanwhile, make the dressing. Whisk together all dressing ingredients in a large salad bowl. Add the kale and, using your hands, toss it with the dressing. 3. Once the quinoa is cool, add it to the bowl with the kale, along with the chickpeas (if using), blueberries, goat cheese, almonds, and avocado. Toss gently to combine. Serve.

Nutrition (PER SERVING*) Calories: 264.5 Fat: 12.0 g Carbohydrates: 31.0 g Sodium: 86.3 mg Fiber: 7.2 g Protein: 10.5 g

Recipe Kristine’s Kitchen. Visit2017 www.kristineskitchenblog.com/kale-superfood-salad-with-quinoa-and-blueberries 18 from HepatitisWA Newsletter // March

High protein

a l p g n i t a e y high energ

In chronic liver disease, there are additional considerations you will need to make in your diet to support your liver and health. It is common for people with advanced liver disease to develop ‘protein-energy’ malnutrition.

breAkkie • Cereal and full-cream milk/or porridge • Eggs (cooked to your liking) with unsalted butter and toast (or reduced salt spread) • 1 cup yoghurt or custard with fruit • Hot chocolate or coffee made with milk, or a glass of milk

To increase your protein and energy intake, use this sample eating plan.

SNACKS • Ricotta or Swiss cream cheese on toast • Cheese and crackers • Milkshake made with full-cream milk

LUNCH • Sandwich with roast meat, chicken, fish, egg or cheese • Baked beans (low-salt variety), eggs or grilled cheese on buttered toast • Meat, fish or poultry with buttered vegetables or salad • Dessert if desired • Glass of full-cream milk

SNACKS • Custard or yoghurt with fruit • Hard-boiled egg • Handful of unsalted nuts, or dried fruit and nut mix (low-salt version) • Custard tart • Yoghurt • Milo • Omelette • Teacake, muesli bars or fruit bread and a glass of milk

DINNER • Meat, fish or poultry with buttered vegetables or salad • Pasta with meat sauce and salad • Toasted cheese sandwich

BEDTIME SNACKS • Milkshake or hot milk with honey or other flavourings • 1 cup yoghurt or custard with fruit • Hot chocolate made with milk • Crackers and cheese

Article extracted from the “High Protein, High Energy Diet - Information for advanced liver disease”, 2012, published by GESA HepatitisWA Newsletter // March 2017 (Gastroenterological Society of Australia).

HepatitisWA’s Deen Clinic is now open for hepatitis C treatments. Available to people who continue to use drugs and/or who do not have a GP.

100%

Bulk-Billing

Make an appointment on (08) 9227 9800. Our services include: • Hepatitis C testing • Hepatitis C treatment

134 Aberdeen St, Northbridge WA 6003

• Support

P: (08) 9227 9800

• Referrals

E: info@hepatitiswa.com.au W: www.hepatitiswa.com.au

HepatitisWA Newsletter // March 2017

wAsuA’s DoMAin THE WEST AUSTRALIA SUBSTANCE USERS ASSOCIATION

TESTING, TESTING

A, B, C

Written by Sarah Grant – Outreach Team Leader, WASUA.

teSTIng, teSTIng, ABC is a WASUA youth event for people aged 25 years and under.

eSTIng, teSTIng, ABC was originally facilitated by WASUA during youth week 2016 with the support of a Local Government and Communities grant, with an aim to engage young people in accessing sexually transmitted infection (STI) and blood borne virus (BBV) testing, and to provide information on STI and BBV testing, transmission, prevention and treatments. The success of this first event has led WASUA to commit to facilitating similar youth events on a regular basis.

The format for teSTIng, teSTIng, ABC involves providing food, activities, resources and testing in a fun and informal environment. A free healthy lunch and snacks are provided throughout the day. Food includes roast chicken and beef, green salads with a range of vegetables, fruit salad, fruit and juices. Show bags are given to all young people who attend the event. Show bags are a good way to discreetly communicate sensitive information to young people. The information provided in the show bags includes information about STI and BBV prevention, transmission, testing and treatment. The bags also contain a range of fun activities (including a mindfulness colouring-in book and set of colouring pencils, 22

HepatitisWA Newsletter // March 2017

condoms, pens, temporary tattoos and drink bottles). Many of these resources are provided by the supporting agencies. HepatitisWA (HepWA), the Western Australian AID’s Council (WAAC), Sexual Health Quarters (SHQ) and Red Cross Save-a-Mate all collaborate to support teSTIng, teSTIng, ABC. These agencies help to facilitate games and other activities and communicate information with the young people who attended. WAAC provide the educational game ‘Saucy Sex Cards’. Young people are encouraged to place a list of different behaviours and activities into different risk categories. These behaviours and activities are discussed, educating young people about recognizing and avoiding risk factors for HIV transmission. HepWA provide a temporary tattoo station and discuss with young people the risk of BBV transmission through body art. SHQ provide information on STI’s and contraception, using a demonstration kit to discuss with young people their contraceptive options. Save a Mate bring ‘drunk goggles’; (a set of goggles which give the perception of being intoxicated) in order to initiate discussion around, and to demonstrate to the young people whilst sober, the effects of their alcohol use when intoxicated. Young people

engage in behaviours (including trying to place a condom on a dildo) and then discuss the risks associated with being affected by alcohol or other substances while performing these tasks. Videos and music are played throughout the day including “Don’t Mess with Me” (about Hepatitis C transmission and prevention), “The STI House” (about different STI’s), “Tea and Consent” (about consensual sexual relationships) and “Meet the Contraceptives” (about different forms of contraception, their relative effectiveness, and which will prevent STI transmission as well as pregnancy). WASUA’s nurse is available throughout the day to offer free and confidential testing to the young people who attend. WASUA’s nurse is very experienced, non-judgemental and friendly. Testing for STI’s and BBV’s involves a urine screen, a swab and a blood test. Once the testing is complete a time is organised to return to WASUA and receive testing results – normally the next week. If a person tests positive for chlamydia or gonorrhoea the nurse is able to provide treatment (oral antibiotics) immediately. If test results show a person needs a hepatitis A or B vaccination these can be given

immediately (although hepatitis B may require further follow up vaccinations). These vaccinations give the person immunity from catching the hepatitis A and/or B virus. If a person tests positive for

hepatitis C, information can be offered about what this means and about the new treatments. For people over the age of 18 and living with chronic hepatitis C (virus present for over 6 months) WASUA’s nurse can provide the new, interferon free, hepatitis C treatments. These can succeed in clearing the virus in 95% of cases, with very few side-

PERTH

SOUTH WEST

Clinic Hours Tues & Thurs: 10am-4pm Closed Public Holidays

WASUA provides a number of services on premises at 22/7 Aberdeen St, Perth WA 6000, including: • • • • • • • • •

The next teSTIng, teSTIng, ABC will be held on the 6th and 7th of April, 2017, 10:00am to 3:00pm. The event is held at the WASUA Perth fixed NSEP site, 22/7 Aberdeen Street Perth. To get involved, or for more information on teSTIng, teSTIng, ABC please don’t hesitate to contact Sarah on 0408352433.

Van Phone 0418 739 372 Ofﬁce (08) 9791 6699

(08) 9325 8387 www.wasua.com.au

Perth NSEP Mon - Weds: 10am-5pm Thurs - Fri: 10am-8pm Sat & Sun: 11am-4pm

effects for most patients. The fun and informal environment of teSTIng, teSTIng, ABC makes testing less daunting and the process is quickly forgotten when they reengage with the activities after testing.

97 Spencer St, Bunbury (entry via Rose st) Opening Hours: Monday to Friday 10am - 3pm.

South West Mobile provides a mobile Needle Syringe Exchange Program (NSEP) at the following locations and times: Margaret River Busselton Harvey Collie Manjimup

Tues: 3pm-4pm Tues: 5pm-7pm Weds: 1pm-2pm Weds: 3pm-4pm Thurs: 12pm-1pm

Hospital Carpark Hospital Carpark Hospital Carpark Hospital Carpark Hospital Carpark

NSEP (Needle and Syringe Exchange Program) Free hep A and B vaccinations for hepatitis C positive people Free blood testing in a friendly conﬁdential environment Drug treatment support and referral * FREE equipment on exchangeable items Peer education and training * FREE resources and helpful information Street-based outreach Advocacy and support for users A confidential outreach service is also available throughout the southwest Safe injecting and safe disposal education and resources from Monday to Friday, for people who cannot attend the site locations. Hepatitis C/blood borne virus information and resources Phone 0418 739 372 to arrange a suitable time. HepatitisWA Newsletter // March 2017