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Community News #99 • September 2023
The Voice to Parliament Plus Post-Cure Stigma and more
IN THIS ISSUE 1
Harm Reduction
2
How Hep C Hides From the Immune System
4
Hep B Trends Falling Short
6
Hep C-Related Stigma and Discrimination in a Post-Cure World
10
The Voice to Parliament
12
World Hepatitis Day 2023
14
In Our Library
16
Contacts
Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au. Editor: James Morrison Some photos in this publication may have been altered to disguise identifying details of members of the public. This resource was prepared and printed on Kaurna Country. Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist. We welcome contributions from Hepatitis SA members and the general public. SA Health has contributed funds towards this program. ISSN 2651-9011 (Online)
Harm Reduction Up to 3,000 lives saved in first year of Take-Home Naloxone program In the wake of International Overdose Awareness Day (31 August), it’s worth noting that it is now estimated that in its first year alone, the Take Home Naloxone (THN) program has saved 3,000 lives. The national THN program provides naloxone to anyone who may experience, or witness, an opioid overdose or adverse reaction for free and without a prescription. Since the THN program began on 1 July 2022, an estimated 3,001 doses have been used by Australians experiencing or witnessing an opioid overdose or adverse reaction, which is the equivalent of 8 uses per day. Over 110,000 Australians are currently living with opioid dependence, and 45.7% of unintentional drug-induced deaths in 2021 involved opioids. “The Take Home Naloxone program has saved Australian lives,” said the Pharmaceutical Society of Australia’s national president, Dr Fei Sim. “Evidence from the first year of the THN program shows that pharmacists are well-placed to provide naloxone, whether alongside a prescribed opioid or as a stand-alone supply. “We are urging anyone taking opioids, or caring for someone who does, to have a conversation with your local pharmacist about having naloxone on-hand. We can also provide advice about identifying an opioid overdose and how to respond during an emergency. “Over recent years we have seen more cases of illicit party drugs being spiked with acetylfentanyl which can cause opioid overdoses even in small amounts.The Take Home Naloxone program could save your life, or the life of a friend.” Take Home Naloxone is available to Australians through their local pharmacist. We
recommend calling ahead to ensure your local pharmacy participates in the THN program and has available stock. If you run into problems, give Hepatitis SA a call on 1800 437 222 and ask for Carol or a CNP Peer. You can also ring and ask for more general information about naloxone or preventing overdose, or visit overdoselifesavers.org.
I was lucky enough to attend HR23 this year (see last issue). It’s the first time I’ve attended anything like this, and I found it to be a great opportunity to network with people from other organisations as well as hear about what’s going on in the world of harm reduction. I especially liked meeting the workers from Harm Reduction Victoria, and loved the fast-food restaurant themed display they had set up (see photo above)! In one of the sessions, the EC Partnership campaign was mentioned, and as I was involved in promoting it in the Adelaide city centre last year I was rapt to hear it had been one of the most successful campaigns thus far. I also heard several speakers talk about their harm reduction efforts in countries such as Myanmar, and couldn’t help but think that they’ve really got their work cut out for them. After that I’ll never complain about having to get up for work again… Well, maybe just a little. Meagan Standfield HEPATITIS SA COMMUNITY NEWS 99
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How Hep C Hides from the Immune System Danish scientists have solved the question of how the hepatitis C virus (HCV) hides in humans. With a new method for examining virus samples, researchers from the University of Copenhagen have solved a long-standing mystery about how the virus avoids the human body’s immune defence system. The result may have an impact on how we track and treat viral diseases in general. The study has just been published in the scientific journal Nature. Hepatitis C was discovered in 1989 and is one of the most studied viruses on the planet, but its ability to evade the human immune system has never been successfully explored before. A new method for examining virus samples has led researchers at the University of Copenhagen and Hvidovre Hospital to the answer, which is: the virus just puts on a ‘mask’. By donning this mask, the virus can remain hidden while making copies of itself to infect new cells. The mask cloaks the virus in the form of a molecule already in our cells. Disguised by the molecule, our immune systems confuse the virus with something harmless that needn’t be reacted to.
The Five-Prime Cap on an RNA virus Source: Takara Learning Centers
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Most RNA viruses (like hepatitis C, COVID-19, the flu, and others) have something called a five-prime cap (often written as a 5’ cap) on their ends, which acts to protect the virus and maintain its stability during replication. Until now, nobody had been able to find hepatitis C’s five-prime cap. Now, thanks to this research, we know that the five-prime cap used by HCV is flavin adenine dinucleotide (FAD), a common chemical already present in the biological machinery of our cells. FAD is a molecule composed of Vitamin B2 and the vital energy-carrying molecule ATP. FAD is vital for our cells to convert energy. The FAD molecule’s importance and familiarity to our cells makes it ideal camouflage for a malicious virus. “How the hepatitis C virus manages to hide in our liver cells without being detected by the immune system has always been a bit of a mystery. Our revelation of the virus’ masking strategy is important, as it could pave the way for new ways of treating viral infections. And it is likely that other types of viruses use the same trick,” explained Associate Professor Jeppe Vinther of the
University of Copenhagen’s Department of Biology, who together with Associate Professor Troels Scheel and Professor Jens Bukh, from Copenhagen Hepatitis C Program, headed the research. For several years, the research team had a good idea that FAD was helping the virus hide in infected cells, but they lacked a clear way to prove it. To solve the challenge, they turned to Arabidopsis, a well-known experimental plant among researchers. It was, for example, the first plant to have its full genome sequenced.
“We were getting desperate to find a way to prove our hypothesis, which is when we purified an enzyme from the Arabidopsis plant that can split the FAD molecule in two,” explains Anna Sherwood from the Department of Biology, who together with Lizandro Rene Rivera Rangel are first authors of the study. Using the enzyme, the researchers were able to split the FAD and prove that the hepatitis C virus used it as a mask. As an RNA virus, hepatitis C’s genetic material consists of RNA that must be copied once the virus enters its host organism. New RNA copies are used to take over new cells, and one end of the RNA’s genetic material is masked by the FAD. According to Jeppe Vinther, it is very realistic that other RNA viruses use similar masking techniques to spread without being detected by cellular control systems. In fact, researchers have already found another virus that uses the same strategy. And there are likely more. “All RNA viruses have the same need to hide from the immune system and there is a good chance that this is just the beginning. Now that we’re attuned to this trick, it opens up the possibility of developing new and perhaps improved methods of tracking and treating viral infections in the future,” said Professor Vinther. READ MORE: www.nature.com/articles/s41586-02306301-3 The Arabidopsis thaliana plant
Photo: Krzysztof Ziarnek
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Hep B Trends Falling Short The Viral Hepatitis Mapping Project looks at geographic variations in the prevalence of viral hepatitis across Australia, as well as access to care, to identify priority areas for response. It is a joint initiative of the WHO Collaborating Centre for Viral Hepatitis Epidemiology, The Doherty Institute and ASHM, funded by the Australian Government Department of Health and Aged Care. The project is especially useful because it divides the country up into small areas (sometimes called statistical areas or SAs), meaning that it can be used to pinpoint exactly where and how easily people are being diagnosed and treated across the country. Localised health care and access to treatment for hepatitis B and C is a key objective of recent healthcare reform in Australia and enhancing access to treatment and care is a priority action in both the National Hepatitis B Strategy 2018-22 and the National Hepatitis C Strategy 2018-22 . The Project’s national report on hepatitis B for 2021 has just been published, and it shows some interesting and concerning trends (the report on hepatitis C is forthcoming).
TREATMENT Some people living with hepatitis B require antiviral therapy to prevent disease progression. Nationally, treatment uptake for chronic hepatitis B in 2021 was 12.7%, which is significantly short of the target of 20% set by the National Hepatitis B Strategy 2018–2022. Worryingly, although the number of people receiving treatment has increased over time, the rate of increase has reduced in recent years. Treatment uptake was highest in Public Health Networks (PHNs) in Sydney, Melbourne, and Brisbane, as well as in the Australian Capital Territory. Only 13 of the statistical areas (4.4% of those reported) had already reached the 2022 treatment uptake target of 20%. General practitioner (GP) prescribing for hepatitis B treatment was stable in 2021, and 22.2% of people treated for it in 2020 had a GP prescribe at least one of their prescriptions. Figure A 29: Geographic variation in CHB treatment uptake in Greater Adelaide, by PHN and SA3, 2021
Figure A 30: Geographic variation in CHB treatment uptake in SA (other Adelaide), by PHN and SA3, 2021
PREVALENCE An estimated 200,385 people were living with chronic hepatitis B (CHB) in Australia in 2021, representing 0.78% of the total population.
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TRENDS IN CHRONIC HEPATITIS B BY STATE AND TERRITORY
The highest rates, by a significant margin, were found in the Northern Territory (1.73%, more than twice the national average), while Adelaide and Country SA were below the average (with 0.66% and 0.32% respectively).
The statstical areas for Adelaide and South Australia
ABS, Australian Bureau of Statistics. CHB, chronic hepatitis B. PHN, Primary Health Network. SA3, Statistical Area 3. ABS, Australian Bureau of Statistics. CHB, chronic hepatitis B. PHN, Primary Health Network. S Key: Darker shade of blue denotes higher treatment uptake. PHN outlines, names and overall treatment estimates are Key: Darker shade of blue denotes higher treatment uptake. PHN outlines, names and overa denoted in black. Grey areas represent SA3 regions outside the boundary of the PHN, or those with data suppressed denoted in black. Grey areas represent SA3 regions outside the boundary of the PHN, or tho due to low treatment numbers (<6). due to low treatment numbers (<6). Data source: CHB prevalence estimates based on mathematical modelling incorporating population-specific prevalence Data source: CHB prevalence estimates based on mathematical modelling incorporating po and ABS population data. Treatment data sourced from Medicare statistics. and ABS population data. Treatment data sourced from Medicare statistics.
CARE
TESTING TRENDS
All people living with hepatitis B should be engaged in care. Nationally, engagement in care (either undergoing treatment or regular monitoring of disease progression) in 2021 was 26.0%, which is sadly only just over half the National Strategy 2018–2022 target of 50% by 2022.
Maintaining high testing rates among all populations at risk is critical to ensure people living with hepatitis B are quickly diagnosed and linked to care. Nationally, the number of hepatitis serology tests occurring through Medicare reduced in 2020, and this decline has continued through the end of 2022, resulting in an estimated 1.3 million fewer serology tests over this time period.
As with treatment uptake, care uptake was highest in PHNs in Sydney, Melbourne, Brisbane and Australian Capital Territory. Only three statistical areas had already reached the National Strategy 2018–2022 care uptake target of 50% by 2022. These were in the Northern Territory (East Arnhem), Northern Queensland (Far North) and Brisbane South. Overall, the number of people engaged in monitoring (those who received a viral load test while not receiving antiviral treatment) reduced in 2020 and in 2021, impeding progress toward the care uptake target. GPs provided almost half of all monitoring tests in 2021. IMMUNISATION Hepatitis B immunisation is recommended for all infants born in Australia. Further, there are also publicly funded immunisation programs to ensure certain higher risk groups are also able to access hepatitis B vaccine. Even though in previous years the National Strategy 2018–2022 target of infant immunisation against hepatitis B, a rate of 95%, has been met, in 2021 the national rate declined to 94.6%. Coverage was even lower among Aboriginal and Torres Strait Islander children (91.8%), and this also declined between 2020 and 2021. The 95% coverage target was met in 16 of Australia’s 31 PHNs for all children, and in eight PHNs for Aboriginal and Torres Strait Islander children.
Although the rate of decline varied, between 2019 and 2022 it took place in all states and territories. CARE UPTAKE IN SOUTH AUSTRALIA Treatment uptake for hepatitis B in SA during 2021 was measured at 10.9%, notably lower than the national average of 12.7%. SA ranked in fourth place for treatment uptake out of the eight states and territories. As you might expect, given ease of access, treatment uptake was highest in Adelaide and lower in more remote regions. In the Adelaide PHN it was 12%, and an impressive 18.9% in the Port Adelaide – West statistical area. Though this was still below the 20% target from the national strategy, if the trends in the number of people receiving treatment in this area continue, it is projected to have reached the 20% National Strategy treatment uptake target in 2022. Treatment uptake was also above the national average in the Salisbury (15.6%), Charles Sturt (14.2%) and Norwood – Payneham – St Peters (13.6%) statistical areas. However, there was a decline in the rate of people receiving treatment in the Mitcham, Playford and Unley statistical areas. Assessing variation in treatment uptake within Country SA is difficult, as most statistical areas in the region have a small population, leading to high uncertainty within the data. However, the available data does not suggest substantial variation in uptake within the PHN. The number of people receiving treatment in this PHN increased at a similar rate to the national trend during 2019–2021.
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Hep C-Related Stigma and Discrimination in a Post-Cure World Since 2016, the entire landscape of hepatitis C has been transformed. That was the year new treatments called direct-acting antivirals, or DAAs, became available. DAAs can cure chronic hepatitis C infection in more than 95% of cases. In these seven years, over 95,000 people living with hepatitis C have been treated in Australia—more than half of the estimated number of people in the country with hepatitis C, which is a lot of lives transformed and many potentially saved. Because of its prevalence among people who have injected illicit drugs, chronic hepatitis C is a heavily stigmatised condition. This is certainly the case in Australia, where this group are the key population affected by the virus, and where illicit drug injecting is criminalised in most jurisdictions. People who contract the virus often go on to experience discrimination and stigma, often in extreme and damaging forms. This has been most documented in healthcare settings, where it can disturb or block access to some of the most basic and vital forms of care. Stigma can injure or kill. Stigma and discrimination is also a legal issue, and can rear its head in contexts where people apply for insurance, citizenship, and more. It has been such a common experience in their life for some that it starts to seem ordinary. So what changes have DAAs brought in the stigma and discrimination associated with hepatitis C? Does their advent herald a transition to a truly ‘post-cure world’? What does life look like for people after treatment,
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and does the stigma and discrimination that often accompanies it go away when they clear the virus? Or do people with a history of hepatitis C still experience stigma and discrimination? If so, where does it occur and in what ways? Are there systems and mechanisms from before the advent of DAAs that need updating? Which laws, policies and practices need reform so that people with or treated for hepatitis C can live better, less burdensome lives? Researchers at the Gender, Law and Drugs (GLaD) program at La Trobe University, Melbourne, wanted to know the answers to these questions, and for three years have been running the Post-Cure Lives Project. This operates through a number of different methods of data collection and analysis, such as interviews with people who have experienced DAA treatments, and interviews with people who work with affected communities across law, policy and service provision, including in drug user organisations, legal services, and government departments developing and implementing new policy on hepatitis C. For the first time ever, the project mapped the laws and legal statutes, and the state and Commonwealth policies relevant to the virus
to then analyse how they shape hepatitis C-related stigma—either in ways that reduce or amplify it—and whether they are in need of reform. In August 2023, the GLaD team released their summary report from the project, with findings and a list of recommendations for reforms to law, policy and practice in
Selected Findings • New DAA treatments have the potential to reduce stigma and discrimination by changing the idea of hepatitis C from being a ‘chronic’ disease to a curable one, reducing the sense of punishment associated with treatment, and enabling people to feel a sense of pride in the completion of treatment that alleviates feelings of shame they previously may have had. • People who have undergone treatment with DAAs reported largely positive experiences of treatment. Some said treatment had positive social effects, including reducing feelings of being an ‘infectious person’, reducing fears of infecting other people, and strengthening intimate relationships (e.g., with family, partners and friends). However, many continued to experience hepatitis C-related stigma and discrimination after treatment, especially in healthcare settings, and did not feel that treatment had changed that. • The national and state strategies have begun to address post-cure concerns; however, these remain largely focused on medical surveillance, and the prevention of re-infection.
Australia. These recommendations all aim to reduce the stigma and discrimination related to the virus, to make life better for people with a history of hepatitis C in various ways, and to support viral elimination. The report is now available at bit.ly/ posthepc. Let’s look at some of what it says.
• Hepatitis C can linger in people’s lives after being cured, including via administrative systems, legal mechanisms and medical records. Certain legal processes have the potential to ‘remake’ hepatitis C after cure, meaning individuals may be medically cured and yet legally marked as perpetually ‘having’ hepatitis C. This means people with a history of hepatitis C may continue to experience stigma and discrimination in legal contexts after curative treatment. Concerns about this arose in both stakeholder and lived experience interviews, including via reports that hepatitis C antibodies are often misinterpreted for and treated as the virus itself, including in healthcare settings. • The legal system continues to regard hepatitis C as serious and disabling, HEPATITIS SA COMMUNITY NEWS 99
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despite the advent of cure. This has implications for sentencing, in which hepatitis C can operate as a mitigating factor leading to reduced sentences for offenders affected by the virus. It may also be an aggravating factor in sentencing, particularly where victims are infected or at risk of infection by the virus. There are implications for criminal compensation cases, as awards can be increased when victims are either put at risk of contracting the virus or where the virus is transmitted through the offender’s act of violence. • In some legal contexts since DAAs appeared, people with hepatitis C were no longer conceptualised as ‘impaired’ or ‘disabled’. These shifts in rhetoric and judgment have seen hepatitis C reconstituted as something that can be cleared, via cure, enabling the individual to become ‘able-bodied’ for legal purposes, and creating the expectation that, once cured, the virus will no longer affect them. This can affect rights and entitlements, including access to residency, social security and other social benefits. • Insurers may be relying on outdated data regarding hepatitis C, with reports that chronic hepatitis is still being considered a risk among insurance providers, even after treatment. People with a history of the virus may not be granted insurance coverage or may be charged higher premiums, which may amount to unlawful discrimination. • Individual experiences of treatment are extremely diverse. Treatment can be experienced as transformative, lifechanging or lifesaving; as a huge relief, or as deeply disappointing and not living up to hopes and expectations. Discussions of the cost of new treatments to taxpayers and the government have shaped some people’s treatment experiences, which some of our participants described as a form of luck, good fortune, or a gift contingent on the beneficence of the state. This suggests that among people
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treated for hepatitis C, not all feel entitled to health care, which could inadvertently discourage some people with hepatitis C from accessing treatment, either initially or again in the case of re-infection. • Stigma and discrimination remain strong for people who use or have used injecting drugs, who have concerns about issues like hepatitis C epidemic surveillance (e.g., named notifications and the digitisation of health records), and how these may continue to affect people with a history of the virus, including their ability to access healthcare, their right to privacy and their ability to control the disclosure of their history of hepatitis C. • People who have undergone treatment for hepatitis C said they felt that the record of the virus on their medical records led to stigmatising and discriminatory treatment in health care. Additionally, not everyone feels the desire to completely leave hepatitis C behind them after treatment, as some find value in their personal experience of living with the virus. • Current approaches to hepatitis C care, including the cascade of care, do not sufficiently address the needs of people after treatment, and a range of healthrelated and other needs remain unmet. Selected Recommendations • Australia must develop a health data justice framework that balances the benefits of pathways into hepatitis C health care with the risks associated with the use, re-use, and re-purposing of medical and health data to access such care. • The Department of Health and Aged Care and its state and territory equivalents should develop stigma-sensitive workforce training and education programs designed for and made available to all people who work with hepatitis C-affected communities. • Federal, state and territory hepatitis C strategies and action plans should contain
an explicit focus on post-cure life, to ensure they address both the medical and other needs of people cured of hepatitis C. This should include explicit goals to reduce the stigma and discrimination that endures for many people after treatment. • The Communicable Disease Network and/or other responsible bodies should review existing national, state- and territory-based systems of hepatitis C notifications, with consideration given to removing name requirements and other personal/identifiable information for new notifications or to introducing opt-in mechanisms for named notifications. • The Department of Health and Aged Care should ensure that the National Hepatitis C Testing Policy includes robust, optin, informed consent processes on all occasions of hepatitis C testing. • All jurisdictions in Australia should legalise the personal use/possession of drugs and decriminalise the use/possession of injecting equipment. • Australia must meet its human rights obligations to prisoners, including the obligation to provide equality of health care and harm reduction through the establishment of needle and syringe programs in prisons. • The Office of the Australian Information Commissioner and its state and territory equivalents should develop guidance on privacy rights and dealing with unwanted disclosure of hepatitis C. • Federal, state and territory governments should undertake comprehensive law reform in recognition of the advent of curative hepatitis C treatments, with particular attention to discrimination law, migration law, insurance law and criminal law.
• The Financial Services Council should develop a new guidance note on insurance underwriting for hepatitis C that reflects developments in treatment and with a view to addressing unfair exclusions, increased premiums and policy voiding based on a history of hepatitis C as well as stigma-sensitive questioning in insurers’ questionnaires. • The Departments of Foreign Affairs and Trade and of Home Affairs should improve migration decision-making processes in relation to refugees and migrants with hepatitis C by supporting further research on access to hepatitis C treatments in different countries to be included in country information reports. The project’s work dovetailed with several relevant national and state inquiries, legislative debates, law reforms and community consultations, including the development of the Sixth National Hepatitis C Strategy 2023-2030. The Draft Strategy took up recommendations from the project, including recommendations to establish baseline measures for legal and human rights issues and a strengthened emphasis on addressing post-cure life. The research team also contributed to the development of the inaugural National Stigma and Discrimination Reduction Strategy through its public consultation process; and gave written and oral evidence to the Inquiry into the New South Wales Mandatory Testing Bill 2020, expressing opposition to the Bill on the grounds that it undermined efforts to reduce the stigma and discrimination associated with blood-borne viruses and was in tension with public health and disease prevention efforts. READ MORE: bit.ly/posthepc
• There needs to be law reform to enable people cured of hepatitis C to remove their history of hepatitis C infection and/ or treatment from their medical records or restrict access to that information. HEPATITIS SA COMMUNITY NEWS 99
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Hepatitis SA Supports the Voice to Parliament On 5 June 2023, the Board of Hepatitis SA resolved to support the Voice to Parliament. Hepatitis SA accepts the invitation of the Uluru Statement from the Heart and welcomes the announcement of the 2023 Referendum on an Aboriginal and Torres Strait Islander Voice. We acknowledge this Land was never ceded, that it always was, and always will be, Aboriginal Land. Hepatitis SA supports the establishment of an Aboriginal and Torres Strait Islander Voice to Parliament in the Australian Constitution. A constitutionally enshrined Voice to Parliament will give Aboriginal and Torres Strait people a say on issues that affect their lives. Hepatitis SA Chief Executive Officer, Kerry Paterson, said the trauma of colonisation and racist government policies over generations have resulted in excessive socio-economic disadvantage for Aboriginal and Torres Strait Islander people. “Aboriginal and Torres Strait Islander people are over-represented in the communities we serve including those in the criminal justice system, drug and alcohol services and those affected by viral hepatitis,” she said. “Decades of effort by governments to address the disparity has not closed the gap. “The Voice to Parliament is a proposal from the Aboriginal and Torres Strait Islander people themselves.
“We believe it is not controversial for governments to inform their decision-making by listening to experts. The experts on issues affecting Aboriginal and Torres Strait communities are leaders of Aboriginal and Torres Strait Islander people. “A constitutionally protected Voice to Parliament provides a permanent channel of advice to government through which Aboriginal and Torres Strait Islander people can have real input into decisions affecting their communities. “We urge our members to make an informed choice in the Referendum on 14 October. “If you don’’t know, find out.” READ MORE: • voice.gov.au (also available in other languages) • ulurustatement.org • www.yes.org.au • www.sacoss.org.au/campaign/mainsite/uluru-statement-and-voicereferendum • www.aec.gov.au/referendums • See the back cover for the Uluru Statement in full. Authorised by K Paterson, Hepatitis SA, 3 Hackney Road, Hackney SA 5069
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“If my vote can change the lives of First Nations people by even a tiny, tiny bit, then why wouldn’t I vote ‘Yes’?” Community groups like Hepatitis SA are coming forward to support the Uluru Statement from the Heart, and to say “Yes” to the Voice to Parliament. They include community service organisations, ethnic/ cultural associations, diverse faith-based communities and professional bodies. Major religious organisations were early supporters with a joint statement (bit.ly/ faithvoice) released in May 2022. This gave impetus to the formation of the Multicultural Australia for the Voice (bit.ly/multivoice), alliance with up to 178 organisations signed up to date. These community service groups include SACOSS, Hepatitis Australia, NUAA, NACCHO, Diabetes Australia, Cancer Councils and faith-based charities The Salvation Army, Anglicare Australia, Baptist Care Australia, Catholic Social Services Australia, St Vincent de Paul Society and UnitingCare Australia. Professional bodies ranging from Law Societies, the College of General Practice, the College of Surgeons, the Nursing Federation and the Institute of Architects are also on board. Among the many and varied reasons given, top on the list is improved outcomes for Aboriginal and Torres Strait Islander people. This came through clearly in health services where organisations cited better health outcomes as a reason for supporting the Voice. Hepatitis Australia viewed it as “core business” in Australia’s efforts to eliminate viral hepatitis.” The Cancer Council SA saw it as a reform that would align with their strategy and purpose to “reduce the rate and impact of cancer for all South Australians.” The Royal Australian College of General Practitioners (RACGP) said, “The Voice to Parliament will help drive changes to improve health outcomes for Aboriginal and Torres Strait Islander peoples and address the inequity in our health system”, and the Australian Medical Association (AMA) saw it as “a tangible opportunity to improve the health and wellbeing of Aboriginal and Torres Strait Islander peoples”.
The National Aboriginal Controlled Community Health Organisation (NACCHO), pointed out, “Research clearly shows the links between constitutional recognition and improved health outcomes.” The other common theme is that the Voice is a just and reasonable request. Some direct quotes include: • The Voice will enable self-determination to create a more just society. • [It is] a crucial step towards rectifying the deep-seated historical injustices ingrained in our nation’s past. • [It will] create a better society for everyone. • It is a just and inclusive approach to decision-making processes that impact First Nations people. • This reform is modest, practical and fair. • It is important for closing the gap in health and education. Others saw it as part of the reconciliation process, accepting the Uluru Statement’s call for Voice, Treaty, Truth, with the Voice being the first step. Less common but just as compelling reasons cover historical perspective, trust, personal lived experience, acknowledging the First Nations stewardship of the land over 65,000 years, and the negative consequences of saying “no”. These were often from people of migrant backgrounds. “We have confidence and trust in our indigenous brothers and sisters,” said one. “Because I know what it is like to be displaced,” said another. Another reminded his viewers that “for 65,000 years they have been caretakers of this land”, with another one declaring, “By voting yes, I will be standing with them reclaiming what has always belonged to them”. One of the most thought-provoking might be a simple question put by someone who was initially unclear about his own position: “If my vote can change the lives of First Nations people by even a tiny, tiny bit, then why wouldn’t I vote “Yes”?”
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World Hepatitis Day 2023 The Life, Relationships and Hepatitis B Quiz was the highlight of SA’s 2023 World Hepatitis Day campaign. Available online in four languages, the Quiz included a draw for a $500 Visa card. It ran for just over a month from 28 July to 31 August. There were 441 eligible entries, of which 121 were on paper and 320 online. The Education team ran several sessions in July and August, reaching at least 200 people from diverse communities. They included the Aboriginal community at Maringga Turtpandi, the staff, women’s group and adult education classes at Community Access and Services SA (CAaSSA), English is B Plains, language students epatitGilles nships anatd HTAFE tiothe Relaas Liasfe,well Filipino community in the Protect Yourself before and atitis B if you had it une to hep ily imm and in Adelaide with the Filipino test. If you You may be Protect Your Fam Riverland ths. Get a hepatitis B to protect mon 6 way t t firs bes the The in B. it is got rid hepatit ted. There is a vaccine forCommunity y are vaccina get vaccinated. , the une sure e imm mak not Association. to are is ut e vaccine. people you care abo with a safe, effectiv sexual d and is transmitted via bloo The hepatitis B virus it to their babies hepatitis B may pass with s her Mot ds. flui e ways to re are safe and effectiv during birth, but the ns. ssio smi prevent these tran ezing, coughing, smitted through sne Hepatitis B is not tran s. nsil ute ring sha hugging, kissing or plans like stop your exciting life Hepatitis B should not riage, kids. mar study, career, dating,
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3 dos For most people Hepatitis SA Educator Shannon Wright said to confirm es, get a blood test After receiving 3 dos es. may need extra dos ple peo e Som y. immunit they had highly positive feedback at’t havall e to don ted and immune, you Once you’re vaccina your partner or anyone from B is atit hep ting events. “One Maringga worry about getTurtpandi worker said else. the session they attended had been the best education session they’ve had,” she recalled.
Most participants at the community sessions were able to answer questions about hepatitis B and hepatitis C, and after the sessions many confidently went on to take part in our online quiz. And participants at an English-language class at CAaSSA were pleased to hear that the quiz was available in languages other than English..
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“Another worker said they used to be so scared of people with those viruses, and it was really good to hear about this to reduce stigma. They also appreciated our positive Hepatitis SA id 782 speaker candour and courage in Reply PaKath’s SA 5071 KENT TOWN DC sharing her lived experience story.”
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In addition, Chen Bin, Viral Hepatitis Nurse from Lyell McEwan Hospital, presented an interactive session with the Chinese community. Hosted by the Chinese Association of South Australia, the session was followed by a lively Q&A. All of the 48 participants said they had learnt new things about hepatitis B and would definitely attend a similar activity in the future. Volunteers at Hope’s Café at Uniting Communities Norwood collected almost 60 entries, discussing the quiz questions with individual customers, many of whom were from disadvantaged communities. On World Hepatitis Day itself—28 July—we
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had an all-day community information stand at the Arndale Shopping Centre, where we tested people for hepatitis C and spoke to others about hepatitis B vaccination, hepatitis C testing and treatment, and encouraged people to participate in the online quiz.
Unley City Council
THIS PAGE: Arndale info stand OTHER PAGE, CLOCKWISE FROM TOP: • Community information session • Online commujnity presenters of the Life, Relationoships and Hepatitis B Quiz. From left: Joshua Riessen, Chen Bin, Miriam Cocking, Huong Nguyen • The World Hepatitis Day Quiz mailer
We also received 46 entries for a prisonspecific hepatitis C quiz run across four sites including Port Augusta Prison, Mount Gambier Prison, Cadell and Mobilong. Participants called the Hepatitis SA Helpline to give their answers. In addition, there were internal competitions in the Adelaide Women’s Prison and at Port Lincoln Prison. Prizes differed at each site, and included Toblerones, notepads and pens, toiletry packs, Nescafe coffee sachets, beanies and sunglasses.
Parliament House
In 2023, Hepatitis SA had a go at getting public buildings to light up green—chosen as the colour of life, vitality and progress—on World Hepatitis Day. Of the 15 venues contacted, three generously agreed to “glow green” on or close to 28 July. Thank you to Adelaide Oval, Parliament House, and Unley Council. The Unley City Council was especially supportive backing up the green lights with social media messages.
Adelaide Oval
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In Our Library Voices for Aboriginal & Torres Strait Islander Health and Wellbeing There is clear evidence that Aboriginal and Torres Strait Islander Peoples are over represented in many areas of chronic health conditions (including hepatitis) and that there are huge disparities in the social determinants that influence health outcomes. It seems logical to give the relevant community a valid voice – to seek advice and information from the people at the centre of this situation and for there to be self determination in the formation and running of initiatives. Here are some of the resources that give an overview of the health status of Aboriginal and Torres Strait Islander peoples and some of the social determinants that have had an impact on overall health status, as well as a selection of successful initiatives.
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HEPATITIS SA COMMUNITY NEWS 99
Overview of Aboriginal and Torres Strait Islander health status 2022 Australian Indigenous HealthInfoNet, Perth, 2023. 103p. report and PPT slides. A comprehensive profile of the current health status of Aboriginal and Torres Strait Islander people including information about the social and cultural context of Aboriginal and Torres Strait Islander health, social determinants, the structure of the population, and measures of population health. bit.ly/ATSIhealthstatus2022 Liver disease in Aboriginal and Torres Strait Islander People Y. Tashkent, et al. Jn. of the Australian Indigenous HealthInfoNet Vol. 3.4. 2022. 28p. Liver disease has been estimated to be the third leading cause of the mortality gap between Aboriginal and Torres Strait Islander and non-Indigenous people due to chronic disease. Recent revolutions in the detection and treatment of liver disease make efforts to improve access to treatment and outcomes an urgent priority for Aboriginal and Torres Strait Islander people. bit.ly/ATSILiverdisease Cultural determinants of
Cracks in the ice webinar: working with Aboriginal and Torres Strait Islander Communities to address methamphetamine use and eliminate sexually transmissible infections Matilda Centre for Research in Mental Health and Substance Use, Sydney, 2022. 57 minute webinar. This webinar discusses some of the important features of working appropriately with Aboriginal and Torres Strait Islander communities, and – while research alone is never enough – some of the ways these projects are seeking to make a positive difference by using a lens that takes into account the broader context of Aboriginal and Torres Strait Islander determinants of health. bit.ly/ATSI_ice
Aboriginal and Torres Strait Islander health roundtable Lowitja Institute, Melbourne, 2014. Report and presentations. The aims of the roundtable were to clarify what the cultural determinants of Aboriginal and Torres Strait Islander health and to consider strategies that could assist in strengthening culture as a determinant of Aboriginal and Torres Strait Islander health. The overarching themes identified by the roundtable included the need to learn to work with Aboriginal and Torres Strait Islander peoples and nations to rebuild their resilience and cultural sustainability. bit.ly/lowitjaroundtable South Australian Aboriginal health promotion strategy 2022-2030: strengthening and promoting the cultural determinants of health and wellbeing Wellbeing SA, Adelaide, 2022. 28p. report This inaugural strategy aims to support and strengthen the cultural determinants of health and wellbeing. For Aboriginal and Torres Strait Islander people, we know good health and wellbeing is more than good nutrition and exercise. Culture, and the ability to practice it, must be strong. Aboriginal people require a culturally appropriate health system, underpinned by policies, programs and services across all sectors, that supports all aspects of health and wellbeing holistically. The Strategy was developed in consultation with the South Australian Aboriginal community in seven regions. bit.ly/ATSIwellbeing22
Better to know Australian Federation of AIDS Organisations (AFAO and the Anwernekenhe National HIV Alliance (ANA), Sydney, 2022. Website. A sexual health resource for Aboriginal and Torres Strait Islander people. It provides information about common sexually transmitted infections (STIs), what to do if you have an STI and where to get tested. It contains information that deals with both men’s and women’s business. Produced in partnership with Anwernekenhe National HIV Alliance (ANA), an Aboriginal and Torres Strait Islander community-based organisation. bettertoknow.org.au Viral: are you the cure? Ilbijerri Theatre Company, Melbourne, 2022. 26minute film. A short film made with mob for mob about navigating hepatitis C, created through an in-depth engagement process, including community workshops and yarning circles: “Ally and Kev live up in the flats. They’ve got their own little place, a brand new baby and dreams for the future. Life should be good but sometimes things don’t always go to plan. Meet Merv who hasn’t been feeling great lately, not for some years in fact. Years of tough luck, bad choices and hard living have finally caught up with him”. bit.ly/viral_thecure
Deadly Liver Mob University of NSW Centre for Social Research in Health, Sydney, 2021. Website The aims of the Deadly Liver Mob program are to: raise awareness about hepatitis C, including transmission risk factors and treatment options, increase access to bloodborne virus and sexually transmissible infection testing and treatment by and for Aboriginal people, and provide a point of entry to other health services for Aboriginal people. This website contains information about how to adapt the model to suit local context. deadlylivermob.org
Evaluation report: Young, Deadly, Free Project Evaluation – Phase 2 Sexual Health and BloodBorne Virus Applied Research & Evaluation Network, Curtin University, Perth, 2020. 94p. This successful project’s primary aim was to increase the uptake of sexual health screening in 15 remote and very remote communities. This was achieved through a multi-faceted design including a youth peer education program, a social marketing campaign, and the development and dissemination of a suite of 279 community education resources in collaboration with participating communities and project consortium members. bit.ly/youngdeadlyfree_eval2 To view the entire collection of resources and information about Young Deadly Free go to youngdeadlyfree.org.au
HEPATITIS SA COMMUNITY NEWS 99
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Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis.
HEPATITIS SA BOARD
Postal Address: Kaurna Country PO Box 782 Kent Town 5071
Vice Chair Bill Gaston
(08) 8362 8443 1800 437 222
Treasurer Michael Larkin
www.hepsa.asn.au HepSAY Blog: hepsa.asn.au/blog Library: hepsa.asn.au/library
Ordinary Members Bernie McGinnes Sam Raven Joshua Riessen Salma Safi Kerry Paterson (CEO)
@HepatitisSA @hep_sa Resources: issuu.com/hepccsa Email: admin@hepatitissa.asn.au
Chair Arieta Papadelos
Secretary Sharon Eves
How Do I Love My Liver? Once you’re comfortable with this, you can Gum Infections Staying Motivated tattooing and other procedures
Hepatitis C
exercise more often or for longer if you want,
Dentures should fit well to help maintain oral health. Remember to rinse dentures after each meal, and clean them daily with a soft brush and mild soap. Don’t use toothpaste, Living with as this will wear the dentures away. Advanced Dentures should be removed at night and left to soak in cold water while not in Liver Disease the mouth. If the dentures are developing Protect your liver against 3 main a stain, add a small amount of vinegar or threats: viral hepatitis, fatty liver dilute bleach to the water.
Information for Family & Friends
§
and alcohol.
Helpful Hints
Maintain a healthy weight with
fruits and vegetables. standard drink a day.
Avoid binge drinking - don’t drink
Hepatitis C Treatment more than 4 standard drinks in one sitting. There are highly effective cures for hepatitis C with over 99% success rate and little SAThese drugs, known as or noHepatitis side effects. Street address: 3 Hackney Road, HACKNEY direct acting antivirals, are available on the Postal address PO Box 782, KENT TOWN SA 5071 Pharmaceutical Benefits Scheme (PBS). Telephone: 08 8362 8443
Facsimile: 08 8362 8559 Email: admin@hepsa.asn.au Hepatitis SA www. | www.K3myLiver.org.au | www.hepccheck.info Phhepsa.asn.au 1800 437 222 or (08) 8362 8443
An information booklet from
Kaurna Country 3 Hackney Rd Hackney SA 5069 PO Box 782 Kent Town SA 5071 www.hepsa.asn.au
1 Living with Advanced Liver Disease - Helpful Hints.indd 1
achieved so far.
teeth and bad alsohealthy symptoms • breath Promise are yourself rewardsof (perhaps gum infection.high-quality healthy treats, or some new running gear) for achieving your goals.
Causes: • Exercise with a partner or a group. Having other people involved makes it harder for Infectionsyou of to the gums are usually drop out, and you can encourage each caused by plaque on the teeth (see Tooth other. Decay, above) • SetMotivated a regular time for your exercise, so that it Staying Using interferon used as becomes (occasionally a normal part of your routine. Keeping up your exercise regime can a treatment for hepatitis C) or smoking can sometimes be challenging. It’s easy to put lower your resistance to gum things off, but then you disease run the risk of giving
Protect your liver against 3 main up altogether.
Cartoon © The Divine Harvester
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regular exercise.
Eat a balanced diet with lots of Reduce alcohol intake - keep to 1
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Care: threats: viral hepatitis, fatty liver Protect your liver against 3 main • Don’t let yourself get bored—try Maintain good oralforms hygiene by using different of exercise to keep threats: viral hepatitis, fatty liver and alcohol. things a soft toothbrush andinteresting. a fluoride toothpaste, and alcohol. holdingtheMaintain ata45° to theweight gum line • brush Promise yourself healthy rewards healthy with high-quality healthy and moving the(perhaps brush in smallweight circles regular Maintain a healthy with treats, or exercise. some new for achieving www.K3MyLiver.org.au Use dental on running the gapsgear) between regular exercise. Eat a floss balanced your goals. diet with lots of Eat balancedofdiet with lots of teeth andon theawww.hepsa.asn.au surfaces teeth fruits and vegetables. Exercise with a partner or a group. and vegetables. Use an• fruits antibacterial mouthwash, Reduce alcohol keep tomakes 1 Having otherintake people--involved it Reduce alcohol intake keep to 1 preferably standard alcohol-free harderdrink for(like you PerioGard) to drop out, and you can day. standard drink a a day. Reduce or quit smoking encourage each other. Avoid don’tdrink drink Avoidbinge binge drinking drinking -- don’t Make hygienist visits1exercise, •regular Setthan adental regular time fordrinks your so more 4 standard in
1300 437 222
SA Health has contributed funds towards that it becomes a normal part of your this Program. one sitting. one sitting. routine. Warning: People with cirrhosis or blood/
more than 4 standard drinks in
bleeding disorders, or who are taking Last updated Octoberabout 2012 Hepatitis SA Hepatitis SA interferon, should talk to a dentist Hepatitis SA Street address: Hackney Road,437 HACKNEY Phwhich 1800 222be or (08) 8362 8443 any special precautions may Street address: 33Hackney Road, HACKNEY Postal address PO Box 782, KENT TOWN SAKaurna 5071 Postal address PO Box 782, KENT TOWN SA 5071 Country needed. Telephone: 08 8362 8443
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38443 Hackney Rd Hackney SA 5069 Telephone: 08 Facsimile: 088362 8362 8559 Last 08 update: AugBox 2021 Facsimile: 8362PO 8559 782 Kent Town SA 5071 Email: admin@hepsa.asn.au SA Healthadmin@hepsa.asn.au has contributed funds www.hepsa.asn.au Email: www. hepsa.asn.au | www.K3myLiver.org.au | www.hepccheck.info towards this Program. www. hepsa.asn.au | www.K3myLiver.org.au | www.hepccheck.info
What are the risks? Why Love
Exercise Exercise for for Healthy Healthy Livers Why Love Why Livers MyLove Liver? My Liver?
There are no adverse risks or side effects from a Hepatitis C fibroscan. My Liver? & Dental Care Get vaccinated for hepatitis A and B. Practise safe sex. Avoid cosmetic, body piercing,
Get vaccinated for hepatitis A and B. tattooing and other procedures Practise safe sex. where equipment is not fully Avoid cosmetic, body piercing,
All artwork by Hana Jang, used under Creative Commons license: [flickr.com/photos/from_drawing]
Get vaccinated for hepatitis A and B. Practise safe sex. Avoid cosmetic, body piercing,
Denture Care
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Moreyou Information have and you can’t
health and community workers.
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pubhlth-strateg-phys-act-guidelines#guidelines_adults. The Heart Foundation has a number of helpful resources at bit.ly/heartfoundation-physact. The Heart Foundation has a number of helpful
Last updated May 2022
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Last updated October 2012
Information Support
hepsa.asn.au
or visit hepsa.asn.au. Hepatitis SA has lots of useful about Fibroscan scores are ainformation very useful tool,health but and hepatitis. the Hepatitisabout SA Helpline 1300 More generalCall information your on liver can they arek3myliver.org.au. not the whole picture. Your doctor or 437found 222 or at visit Hepatitis SA online at hepatitissa.asn. be au. Come andwill explore our library at 3 Hackney Rd, nurse take into all the information Visit our library online ataccount hepsa.asn.au/ Hackney, for the latest health research findings, or library. they have about yourat health when they make explore the catalogue online hepsa.asn.au/library. www.K3MyLiver.org.au www.K3MyLiver.org.au Formore more information on see recommendations toexercise yousee about your treatment For information on exercise, the Australian Hepatitis SA provides information, support and the Australian National PhysicalforActivity www.hepsa.asn.au www.hepsa.asn.au National Physical Activity Guidelines Adults atand www. options, justaffected the scanby results. education to not people hepatitis, Guidelines for Adults at bit.ly/oznat-x-guide. health.gov.au/internet/main/publishing.nsf/content/health-
SA Health has contributed funds towards resources at www.heartfoundation.org.au/active-living/ SA Health has contributed funds towards this Program. Pages/default.aspx. this Program. SA Health has contributed funds towards this Program.
We can help. Talk to us. Call or web chat 9am–5pm, Mon–Fri
1800 437 222
Hepatitis SAlive has lots of useful information without it! about health and hepatitis.
What happens next? More Information Call the Hepatitis SA Helpline on 1800 437 222
Fibroscan
What is it, and how will it help me?
Free hepatitis A, B and C information, confidential and non-judgemental support, referrals and printed resources.
Because it is the only one
Because it is the only one youand have you have you and can’tyou can’t live without it! live without it! Hepatitis SA Ph 1800 437 222 or (08) 8362 8443 Kaurna Country 3 Hackney Rd Hackney SA 5069 PO Box 782 Kent Town SA 5071 www.hepatitissa.asn.au
SA Health has contributed funds Hepatitis SA provides information, support towards thisand Program. SA provides information, educationHepatitis to people affected by hepatitis, and support and Last update:by April 2022 and education to people affected hepatitis, health and community workers.
health and community workers.
21/08/2014 12:55:25 PM
Hepatitis SA has a wide range of hepatitis B and hepatitis C publications which are distributed free of charge to anyone in South Australia. Free hepatitis A, B and C information, confidential and non-judgemental support, referrals and printed resources.
We can help. Talk to us. Call or web chat 9am–5pm, Mon–Fri
Information Support
1800 437 222 hepsa.asn.au
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HEPATITIS SA COMMUNITY NEWS 99
To browse our collection and place your orders, go to hepsa.asn.au/orders or scan the QR code below:
Viral Hepatitis Community Nurses Viral Hepatitis Nurses are nurse consultants who work with patients in the community, general practice or hospital setting. They provide a link between public hospital specialist services and general practice, and give specialised support to general practitioners (GPs) to assist in the management of patients with hepatitis B or hepatitis C. With advanced knowledge and skills in testing, management, and treatment of viral hepatitis, they assist with the management of patients on antiviral medications and work in shared care arrangements with GPs who are experienced in prescribing medications for hepatitis C or accredited to prescribe section 100 medications for hepatitis B. They can be contacted directly by patients or their GPs: CENTRAL: QUEEN ELIZABETH HOSPITAL Jeff: 0423 782 415 Amanda: 0466 851 759 Debbie: 0401 717 953
SOUTH Rosalie: 0466 777 876 OFFICE: (08) 8204 6324
NORTH Bin: 0401 717 971 Specialist Treatment Clinics Subsidised treatment for hepatitis B and C are provided by specialists at the major hospitals. You will need a referral from your GP. However, you can call the hospitals and speak to the nurses to get information about treatment and what you need for your referral. • Flinders Medical Centre Gastroenterology & Hepatology Unit: call 8204 6324 • Queen Elizabeth Hospital: call 8222 6000 and ask to speak a viral hepatitis nurse • Royal Adelaide Hospital Viral Hepatitis Unit: call Anton on 0401 125 361 • Lyell McEwin Hospital: call Bin on 0401 717 971
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HEPATITIS SA COMMUNITY NEWS 99
