- An Education
- Needles Behind Bars
- Entering Prison
- Conference Time
- Liver Fibrosis Breath tests
- No Waiting!
- Living Well on a Low Income
- Understanding Abstracts
The Hepatitis C Council of SA values a learning environment. We welcome students to join us at the Council to pursue their interest in hepatitis C issues and to assist us in our work. In this edition of the Hepatitis C Community News, three students from different disciplines and tertiary institutions—Gemma, Yvonne and Stephanie—share some of their experiences and learning during their recent student placements at the Council.
A couple of months ago I did not know anything about the Hepatitis C Council of South Australia (HCCSA). Being a life science student, and not having any clue whatsoever about health promotion, made it even more daunting. Fast-forward to two months later and those feelings have changed.
My experiences here at the HCCSA have been so fulfilling that words cannot express it. I came to this organisation equipped with vast theoretical knowledge that I had gained from my university studies. For me to be able to put all this theory into practice was even more fun.
During the time of my placement I have indeed learnt a lot more about hepatitis C; I enjoyed chatting with all the staff. Furthermore, being able to join the support group and getting to meet and chat with new people was an amazing and invaluable experience.
At the Hepatitis C Council, everyone made me feel so welcome, and whenever I did not know anything I knew I could feel free to ask anyone for help. Having Stephanie (another student at the Council on placement) around made things a lot easier, as we could chat about our placement projects and uni while we were doing our work.
I would like to thank everybody who made my time at HCCSA enjoyable and worthwhile. To Maggie: I really enjoyed that trip to Gawler to watch Chopped Liver. To Fred and Deborah: thanks for putting up with me when I attended the support group.
Last but not least I would like to thank my placement supervisor Cecilia, for being a mentor to me, and for teaching me more about hepatitis C and everything about the HCCSA. After my time here at the HCCSA I have decided to focus on Public Health as my future career stream.
For my final practicum for my Bachelor of Nursing I elected to go to the Hepatitis C Council of South Australia. During my time here I have done so many interesting and exciting things and met so many wonderful people.
Some of the things which I found really worthwhile were spending time with the educators and going to the prisons and also the workplace education sessions.
Being able to attend the ‘Calming the C’ support group, which is held at the Council on a fortnightly basis, was also a rewarding experience. Not only did I learn an enormous amount about hepatitis C, but I also met some wonderful people who have made me see life in a whole new perspective.
The support workers in the phone room were a world of knowledge and so supportive towards my learning. I am very appreciative for the time that I got to spend at the Hepatitis C Council.
I also spent time at SAVIVE and Nunkuwarrin Yunti, which was also a really wonderful experience.
The Royal Adelaide Hospital, Flinders Medical Centre and the Queen Elizabeth Hospital also allowed me to spend time at their liver clinics and I got to watch a liver biopsy.
On my first day at the Council I knew next to nothing about hepatitis C. I now feel that I have a great understanding of the virus, and am very passionate about the need for good health-care workers in the field of blood-borne viruses, and also drug and alcohol dependence.
By doing my placement at the Hepatitis C Council I have developed a passion for this field of work, and will definitely pursue a career in it once I have graduated.
Over the last 12 weeks I have been completing my public health internship at the Hepatitis C Council of SA. During my time here, I have been working on a small project that aimed to collect personal experience stories from people affected by hepatitis B.
This project was a great learning experience for me, as I was able to conduct interviews, surveys and a focus group, all of which I have never done before. For my project, I interviewed people affected by hepatitis B to find out what they were going through in terms of diagnosis, emotions, support, information and treatment.
I was also able to talk to some primary health-care workers to find out their views on hepatitis B community characteristics, transmission, support, information and treatment. In addition to this, I emailed an online survey around the HCCSA staff and volunteers to ask them about hepatitis story use and how effective they think these stories are.
Although I mainly worked on my project at the Hepatitis C Council, I was also able to take some time to play—quite literally! I was able to travel to Gawler to see the hepatitis C play Chopped Liver. This was fantastic! I was so impressed at how the characters Lyn and Jim really captured the audience, while entertaining and educating them at the same time! Not only was I able to see the play here, but I was also given the opportunity to talk to the people behind the scenes about the issues surrounding hepatitis C.
I feel so privileged to have been able to talk to everyone I met about such sensitive and important issues. I have learned so much from everyone here; lessons that cannot be taught in a classroom.
My time here has really opened my eyes to some of the difficulties people face in today’s society. However, it has also made me realise the generosity and willingness some have to try and fix these problems. Thanks to everyone at the Hepatitis C Council for making my time here so interesting and enjoyable!
The state of SA’s prisons
A new study published in the International Journal of Infectious Diseases (September, 2008) has found that “virtually every illegal needle being used by injecting drug users in the South Australian prison system is infected with hepatitis C”.
Researchers Emma Ruth Miller, Peng Bi and Philip Ryan, all of the University of Adelaide, undertook the study to “determine entry antibody seroprevalence and seroconversion to hepatitis C virus and associated risk factors in newly incarcerated prisoners”.
Almost 700 prisoners, both male and female, were surveyed in the year from October 2004. It was found that 64% of prisoners reported a history of injecting drug use before going to prison, and 42% of prisoners were already seropositive for hepatitis C. Almost 60% of female inmates had hepatitis C when they entered jail. “This is a startling statistic given that only 1.5 per cent of the Australian population is infected,” Deakin University health researcher, Dr Emma Miller said.
Those prisoners who were HCV-negative then underwent antibody testing at three-monthly intervals.
Perhaps surprisingly, only three prisoners were positively identified as having contracted hepatitis C while incarcerated. However, the study’s authors suggest that this might be because “hepatitis C infection among at-risk prisoners had already reached saturation levels”.
For prisoners who had only been locked up for a short period of time—after three months—intravenous drugs were only being used by 8%. At twelve months, however, this rate had jumped to 26%.
The study’s authors stated that “of most concern was that HCV seropositive prison entrants were significantly more likely to commence injecting while incarcerated, and that needle sharing was common in this group. For this reason, “each needle currently in circulation within the SA prison system will almost certainly be contaminated with HCV.” “It is entirely likely that this would also be the case in prisons around Australia,” Dr Miller said. “This has serious implications for prison staff and also for susceptible prisoners.”
Dr Miller said Australian prisons’ zero tolerance of needle exchange programs put inmates not infected with the virus at risk. She said Australian governments needed to consider trialling a needle-exchange program in prisons such as those in Scotland and Germany. Canada is also considering a trial, Dr Miller said. “South Australia has a good methadone program in its prison system, but we need to think more pragmatically and also consider a needle exchange program,” she said.
National prison entrants survey report
“No other country produces a similar report,” were Tony Butler’s (Associate Professor, Curtin University of Technology, Health Research Campus) sentiments when he launched the most recent version of the National Prison Entrants’ Bloodborne Virus and Risk Behaviour Survey Report at the 20th Annual ASHM Conference in Perth.
Tony and Cerissa Papanastasiou (Research Associate Curtin University of Technology, Health Research Campus) prepared the report for the National Drug Research Institute (NDRI), which is the second prisoner health research project to be conducted through the institute. The report is unique in the world in providing ongoing surveillance on the prevalence of blood-borne viruses (HIV, hepatitis B, hepatitis C) amongst this population group. Monitoring these viruses among prisoners is important as many are unaware they are infected and that they could be spreading infectious diseases during their activities.
The prevalence of hepatitis C amongst prison entrants is highest in NSW with 42% and lowest in WA (21%). Women were 20% more likely to have hepatitis C than men. Prison entrants are underserved with regard to treatment for hepatitis C infection - a population that would definitely benefit from a comprehensive prison-based treatment program.
Fortunately, the prevalence of HIV remains less than 1%, in all states, for both sexes. However, the incidence of hepatitis B remains elevated at just under 30% nationally. Dr Susan Carruthers, President of Hepatitis Council of Western Australia suggested that this population is at greater risk of hepatitis B infection as many people showed no evidence of immunity against hepatitis B when screened for the virus. The number of individuals susceptible depends upon the state, and ranges from 14% to 60% of prisoners.
Many delegates attending the launch voiced the opinion that national and state governments should be doing far more about this situation given the availability of the hepatitis B vaccine. The report suggests that a detained population with no antibodies to the virus should be vaccinated as a matter of priority. Currently, staff working in this setting have access to free HBV vaccine; it could be an extension of this system for prisoners.
Another area requiring attention relates to staff knowledge and training in relation to recognising and managing amphetamine withdrawal on entry to prison. Amphetamines were the most frequently reported drug last injected by prison entrants. Tobacco smoking was highlighted as being at epidemic proportions in this population with around 9 out of 10 prisoners reporting they currently smoke. Incarceration is an important, but under-utilised public health opportunity to initiate quit smoking programmes amongst this group.
Susan and Tony both agreed that the prison environment in general provided many opportunities for prisoners to engage in a range of health risk behaviours resulting in an increased risk of exposure to blood-borne viruses. They anticipated the 2007 survey report would be used by states and territories in policy development and planning.
Linda McInnes visits the 2008 Australasian Viral Hepatitis Conference in Brisbane
I attended the 2008 Australasian Viral Hepatitis Conference in Brisbane as both a person with hepatitis C and as the editor and administrator of the Australian Hepatitis C Support (AHCS) website.
There were 500 people attending the conference and Maroochy Barambah, a song-woman and law-woman of the indigenous Turrbal people, sang a ‘Welcome to the Country’ to open the conference.
This was my first conference. There were a lot of presentations, and unfortunately I could not attend all of them as they were held in three different conference rooms. Some intermingled with the others. Hepatitis B was also a focus of the conference, but since my sole reason for attending was hepatitis C, I did not attend any of the HBV sessions.
A few other members from the Hep C Australasia and Australian Hepatitis C Support forum websites were also present at the conference. This meant that we could meet each other for the first time, and also offer one another support during the conference. Online forums are very important for people with hepatitis C: they can remain anonymous, and express their anguish about living with this disease. Often they are almost overwhelmed with the online support, as well as the information they find regarding hepatitis C and its treatment.
For example, at the conference Ken Abrahams from Hep C Australasia gave a presentation informing the audience that forums are important because people with hepatitis C can find out information and talk about making transitions and decisions about the future, finding social acceptance, exchanging information, getting support during difficult times, sharing celebrations, and sharing hepatitis C treatment experiences.
The presenters often used case studies of people with hepatitis C. All of them were about people who had been injecting drug users, and how they coped with living with hepatitis C, disclosure, family, friends, and discrimination. I was disappointed that there were no case studies of anyone that had acquired the hepatitis C virus from transfusions, violence, tattoos, surgery, transplants or any medical procedures. It seemed that they, too, were being labelled automatically assumed to be ‘injecting drug users with hepatitis C’.
I am aware that most people with hepatitis C became infected through drug use, and that this is the reason that they are most focused upon. But in a conversation with a clinical nurse at the conference, she expressed her concern that violence and fighting were not more focused upon as a mode of transmission.
Surprising Good News
I also discovered that some people with HCV who commence treatment may be able to access priority housing with Housing SA. Contact them for more information.
It was announced at the conference that Schering-Plough are also providing retreatment options for people with HCV. Many people who have been ‘non-responders’ or ‘relapsers’ may now consider this option, and should discuss this with their specialists. This retreatment will be available on the PBS and listed on 1 December, 2008.
The Global View
Charles Gore, the chief executive of the Hepatitis C Trust in the United Kingdom, and president of the World Hepatitis Alliance, gave a presentation on his endeavours to have 19 May globally recognised as World Hepatitis Day.
Noting that governments are more likely to listen to ‘patients’ (i.e. those living with hepatitis C) than official organisations, he said that it was they who should run and lead World Hepatitis Day. Of course, the problem with this is that “getting patient groups [community groups] to work together in the UK is like herding cats”.
The Hepatitis C Trust is attempting to raise awareness of HCV in the political sector and around the world, where they are trying to get chronic viral hepatitis the same priority as that given to malaria, TB and HIV/AIDS.
The Elephant in the Room
Brian Edlin, Professor of Medicine at the Downstate College of Medicine, State University of New York, and Adjunct Associate Professor of Medicine and Public Health, Weill Medical College of Cornell University, talked about hepatitis C as “the elephant in the room”. He noted that 10-30% of injecting drug users, per year, are excluded from treatment. Drug users tend not to seek medical help or see doctors. The homeless and underprivileged are usually not diagnosed, nor are treated.
However, he said that it is not ethical to withhold treatment from current injecting drug users, and the National Institute of Health is recommending changes to make it easier for them to access treatment. Among other observations, he pointed out that methadone is not a contraindication to hepatitis C treatment, that doctors usually don’t know enough about hepatitis C to treat HCV patients, and that drug and alcohol dependence should not be left to go untreated.
An Expanding Perspective
A new book will be launched in March 2009. Edited by Greg Dore, Meredith Temple-Smith and Andrew Lloyd, and entitled Hepatitis C: An expanding perspective, it will be “essential reading for anyone working in the area of HCV. Go to www.ipcommunications.com.au to view more details of the book.
Associate Professor Greg Dore, who is head of the Viral Hepatitis Clinical Research Program at the University of NSW’s National Centre in HIV Epidemiology and Clinical Research, gave a talk about the future epidemiology of hepatitis C in Australia.
Since 2005, there have been around 12,000 new hepatitis C diagnoses in Australia each year. Greg Dore noted the declining rate of infections in 15-19-year-olds since 2001, thought to be due to a reduction in the number of new or young injectors.
Of acute new infections in 2007, 77% were in those who inject drugs, 1% from unsterile tattooing, and 15% from unknown causes.
Helen Blacklaws, a clinical nurse, discussed the family impact study on which she had worked. It looked at people undergoing interferon and ribavirin therapy for chronic hepatitis C, and found that support from family and friends was extremely important. People having treatment were often angry and irritable, and found themselves frequently apologising for their behaviour. Secrecy, rejection, discrimination, fear, isolation and financial worries were common problems.
However, though almost all families in the study found the treatment experience to be very hard, they understood its importance. In the end, most were brought closer together, and their resilience and coping was remarkable.
The study suggests that pre-treatment education should be more focused on families, and that coping strategies should be further explored in order to better prepare patients and families for their forthcoming experience.
Dr Max Hopwood of the National Centre in HIV Social Science [whose past work was profiled extensively in issue 36, June 2007] discussed the need for a program for those at the end of treatment, where patients can seek advice, referrals and support for reorientation to work and other aspects of ‘normal’ life.
To this end, the centre has interviewed a number of people as part of a new study. Participants in this admittedly small-scale study reported a variety of sustained physical and psychological after-effects from treatment for HCV.
Some of these after-effects were described as severe and debilitating, and they had persisted for many months following treatment completion. This had a substantial impact on quality of life.
Dr Carla Treloar, also of the National Centre in HIV Social Science, talked about the need for a critical review of increasing hepatitis C treatment uptake. She pointed out that in Australia there are 2,000-3,000 people treated each year, but that this really ought to be 6,000 or more to have an impact on the growing burden of disease.
To get injecting drug users to consider treatment, she talked about plans for non-specialist services like opiate maintenance therapy clinics acting as access sites for treatment. Other alcohol and drug services could also be enlisted.
Hepatitis C and Alcohol
“There is a need for those working in the hepatitis C field to be mindful of the meaning and function that alcohol has for people with hepatitis C and, if possible, provide information on less harmful alternatives,” explained Magdalena Harris of the National Centre in HIV Social Research. Many people with HCV find it hard to stop drinking due to social pressure. They often think that if their ALT levels are normal, then it’s OK to drink. On the other hand, some may even become ‘closet’ drinkers due to pressures not to drink.
Research presented by N. Leembruggen talked about the way some people living with hepatitis C drank hazardous amounts of alcohol after completing treatment. “People with HCV tend to decrease alcohol intake rapidly in preparation for treatment and maintain this during therapy. However, there is a cohort of patients who resume risky drinking habits post-therapy and may be at an increased risk of cirrhosis, hepatocellular carcinoma and liver failure. Further research in a long-term study of alcohol intake and risk factors for relapse is recommended.”
Hepatitis C and Insulin
The final session I attended was presented by Dr Mark Douglas of the University of Sydney. Explaining that hepatitis C is now the leading cause of liver failure and hepatocellular carcinoma in Australia, the USA and UK, he stated that it was recently discovered that patients infected with HCV have an increased rate of insulin resistance, which may lead to diabetes mellitus.
“Insulin resistance is more common in patients infected with HCV genotypes 1 or 2, and predicts non-response to anti-viral therapy,” he said. “The exact mechanism is not known, but it is likely that HCV proteins interact with molecules in the insulin signalling pathway.”
He is now beginning a study that will express proteins from different HCV genotypes in HCV-infected cells and study their effects on insulin signalling, as well as looking at a number of other areas. “We expect that the results of this study will suggest new treatment strategies for people infected with HCV.”
See www.hepatitis.org.au for a complete list of sessions and abstracts from the conference.
What’s in it for people living with hepatitis C?
Recently a survey of Hepatitis Council of SA members was undertaken by Sabine, a qualified massage therapist interested in providing massage specifically for those people living with hepatitis C. Sabine has previously worked at the Council, and has a long involvement with hepatitis C issues.
The first part of the survey was a written questionnaire. In this limited sample, the main age group was those between 45 and 60 years of age, followed by those between 30 and 45 years of age. All had received massages before, and all said they benefited greatly except for one respondent, who did not give any further information in response to this question.
So what did people get out of the massages? Relaxation and Healing were the top two responses. Benefits were experienced on both an emotional and physical level. Respondents thought massage could mostly help with relieving symptoms of muscle and joint pains, depression and fatigue or lack of energy.
Those who were interested in massage said that they would find a therapist either through a friend’s recommendation, or else through classified ads in their local newspaper. People would mostly consider having a massage in their home, with a clinic as the second-most popular choice, and the practitioner’s home being third.
All those respondents who were affected by hepatitis C are also experiencing symptoms. In response to questions about disclosing their hepatitis C-positive status to a massage practitioner, they had very different answers. Half of the people questioned had no issues in disclosing their status, and wanted to educate, inform and help break down the fear barrier that often comes across from an uneducated practitioner. The other half of the people questioned did not see any reason to disclose, fearing that this could lead to discrimination.
For one person, the disclosure depended on whether there were wounds or cuts on their body, and therefore a possible transmission risk. For another it was an issue of trust, and depended upon how good the connection between practitioner and person turned out to be.
Most people said it would be very helpful if the massage practitioner they saw had an understanding of hepatitis C, while five said that this was essential for them.
A smaller group of respondents then agreed to face-to-face interviews. All had received massages before, and again all felt they had benefited greatly.
Improved quality of life was the most common response when asked what massage had done for them. Other common responses included ‘healing’, ‘health care’, ‘therapy’, ‘deep tissue work’ and ‘a feeling of luxury’. Most of the face-to-face respondents said they would find a massage practitioner through friends or through a GP. For other questions their answers matched those who had responded to the written questionnaire.
From this initial research, it would seem that massage is a well-received form of health care for those living with hepatitis C, and much recommended by those who have tried it.
What is it, and what’s new?
A second chance is now being offered to some people who have already been treated (unsuccessfully) for hepatitis C.
From 1 December 2008, Pegatron will be reimbursed on the Pharmaceutical Benefits Scheme (PBS) for retreating chronic hepatitis C in those patients in whom interferon alfa-based therapy has been unsuccessful. Previous therapy includes a single course of interferon alfa (in a pegylated or non-pegylated form), either combined with ribavirin therapy or alone (as monotherapy).
Pegatron combination therapy is given as a 48-week standard course for retreating adult patients with chronic hepatitis C whose prior treatment did not reduce the amount of virus to undetectable levels and maintain this for 24 weeks after the course. Patients undergoing retreatment with PEGATRON are assessed at 12 weeks of therapy to see if their hepatitis C virus levels are undetectable. If this is the case they may continue for the full course of 48 weeks.
The Australian approval and reimbursement of Pegatron is based on a large international study which looked at how effective and safe this drug is when retreating patients with moderate-to-severe liver disease who had not successfully cleared the hepatitis C virus in previous treatment. The EPIC trial involved 1336 patients, including 171 patients at ten Australian study centres, treated with Pegatron.
It is important for patients who are considering retreatment to consult their hepatitis specialist to discuss whether a course of retreatment might be suitable for them and what their likelihood of success might be, based on their own condition and previous experience with treatment.
Poynard T, et al. Predictors of sustained viral response in the retreatment of previous interferon/ribavirin nonresponders: Results from the EPIC program. HEP DART poster #110, 2007.
Even though liver biopsies are no longer compulsory for those seeking treatment for their hepatitis C, they are still much used. So far, they are widely regarded as the most effective way to determine the state of someone’s liver health.
As most people living with hepatitis C are aware, chronic HCV infection can lead to severe fibrosis of the liver, cirrhosis, and hepatocellular carcinoma. Because of this, it can be very important to know the degree to which a person’s liver has been damaged.
Unfortunately, liver biopsies are expensive, uncomfortable, awkward and often painful. They also carry a small risk of complications, as with all surgical interventions.
In a previous issue of the Hepatitis C Community News (#39, March 2008), an interviewee discussed what having a liver biopsy was like.
“Before my first biopsy, I had a real fear that I’d die. I’d either bleed to death on the table, or else come home and bleed to death that night. Then I talked to someone, and they told me that there’s extreme pain if you have a bleed, so you’ll be able to get help if it happens. It’s not a quiet thing where you suddenly keel over. Knowing that helped, in a way.
“I wasn’t sure how immobilised I would be: one person told me you had to spend four hours with your hands behind your head, which wasn’t the case. But I wasn’t looking forward to having to just lie still for hours.
“The process was scary—I still didn’t know what to expect, other than that there’d be a long wait. I had a two-hour wait between arriving and starting the procedure.
“I had the painkiller, which was strange because I went from normal to being unable to think clearly and I couldn’t really speak, and there wasn’t any pain yet to deal with. Then I could feel the needle going in, and it made me wonder why they used a painkiller rather than just the local, because the painkiller was a bit distressing.
“But the doctor kept talking to me, showing me what they would do, and it was over quite quickly. I hardly felt anything, almost no pain.
“Then you just have to lie there for a few hours to recover, and my partner couldn’t come in because it was a recovery ward. That was pretty disappointing, because it wasn’t good to be left by myself after all that.
“I had the biopsy on the Wednesday, and I’d recovered by the Monday. What it feels like afterwards is a bruise, so it can hurt when you move, as though somebody’s punched you really hard in the side.”
Since this can be such a distressing experience, a reliable and non-invasive alternative to liver biopsies would be very welcome.
Now there seems to be one, and all it requires the patient to do is breathe. Called ‘BreathID’, it uses a laser-like light to analyse the molecular make-up of the air expelled from a person’s lungs. Sophisticated software can identify the existence of several diseases with startling accuracy. The machine works on the principle that a damaged liver is unable to efficiently metabolise various substances, which can be measured in the expelled breath.
Peer-reviewed analysis of the ‘BreathID’ demonstrates its effectiveness. In the October 2008 issue of the Journal of Viral Hepatitis, a research team from the Hadassah Hebrew University Medical Center in Jerusalem reported on the machine’s ability to identify liver inflammation and fibrosis in patients who have hepatitis C but normal ALT levels.
The investigators tested 100 patients with untreated chronic hepatitis C, along with 100 age- and sex-matched volunteers who did not have hepatitis C, and who were otherwise healthy. The ‘BreathID’ test was administered to all, and all study participants underwent a liver biopsy within 12 months of receiving the breath test.
Using fairly conservative measures, the researchers found that 67% of liver biopsies could have been avoided by using the breath test.
“The ‘BreathID’ breath test is an accurate tool for measuring the degree of inflammation and fibrosis in patients with chronic HCV infection and normal ALT,” the study authors concluded. “As such, it may prove to be a powerful, non-invasive alternative to liver biopsy in the management of this patient population.”
G Lalazar, O Pappo, T Hershcovici, and others. ‘A continuous (13)C methacetin breath test for noninvasive assessment of intrahepatic inflammation and fibrosis in patients with chronic HCV infection and normal ALT’. Journal of Viral Hepatitis 15(10): 716-728. October 2008.
The QEH’s liver clinic wants to help you
The Queen Elizabeth Hospital’s family and patient friendly liver clinic has treatment places available for people who don’t want a long wait.
“If you’ve already had results from recent tests, these would usually be regarded as valid and you won’t need many new tests done. That means you will be able to start treatment very quickly,” said the hospital’s Viral Hepatitis Centre’s Registered Nurse, Margery Milner.
“We have two gastroenterologists/ hepatologists, three Infectious Disease specialist and a registrar. So we’re well staffed.”
If you want to find out more before talking to your GP, you could also make an appointment to speak with any of the nurses. They are happy to talk to you about the treatment process or to answer questions about side effects and other related matters. The Queen Elizabeth Hospital (QEH) Viral Hepatitis Clinic operates on Tuesdays and Thursdays and the best time to ring is on Tuesday mornings.
If you prefer to stay anonymous, you could also speak to the nurses over the telephone. “Anything you say remains confidential,” said Margery.
“We know treatment is a big decision and try to give as much support as possible to our clients. Family and friends are welcome too,” she added.
The treatment room is neat, comfortable, well-lit and airy, amply stocked with pamphlets and posters. There are also toys to keep young children entertained.
For those who are not comfortable with the English language, interpreters are available by arrangement. The QEH has a full-time Vietnamese interpreter based at the hospital and interpreters in other languages can be called in. To a limited extent, pamphlets in languages other than English are also available.
“To be treated at the QEH, all you need is to get your GP to fax a referral to us on 8222 7728. Your GP can choose to address it to the Viral Hepatitis Clinic, the Infectious Diseases Clinic, or the Gastroenterology Clinic,” said Margery
“You don’t have to live in the Western suburbs to access treatment at the QEH liver clinic. We have treated people from as far away as Kangaroo Island, Broken Hill and Whyalla.”
The current waiting time at the QEH to consult the specialist is not long, and at the time of writing, there is no waiting time for treatment. You may call the clinic to find out current waiting time.
Margery said QEH specialists also see patients privately so patients can also choose to get treatment as a private patient at the QEH.
Margery Milner and Natalie Harrop from the QEH's liver clinic
Anti-Poverty Week (October 12-18)
With poverty and extreme hardship affecting more than a million Australians (and, globally, more than a billion people), the Hepatitis C Council of SA, Shelter SA, the Bowden/Bromptom and Burton Community Centres and the Port Adelaide Community Correctional Centre partnered to put together a day of education, information and fun to address the issues that poverty and hardship have upon a person’s well-being and their capacity to access health-care and housing.
We titled the day ‘Living Well on a Low Income’, and came together to provide education and resources to promote and support the participants’ needs for living well. Shelter SA provided education and resources about housing accessibility and the factors associated with the cycle of poverty in Australia. They also provided information about services that are designed to assist people with housing affordability. We learnt about people’s struggles in community housing, and their frustrations with the public housing system.
HCCSA provided education and information to the community participants about hepatitis C and the social implications that this virus has for people. The education session focused on hepatitis C and diet, social stigma, discrimination, isolation, poverty, mental health issues and well-being.
Attendants were mostly very interested, and were keen to understand what hepatitis C is, although a lot already had considerable knowledge about the virus, and participated in the discussions that followed. Questions also included ‘Can it kill you?’ and ‘Isn’t it a druggies’ disease?’. People were interested to learn that even if we clear the virus we can still catch it again. HCCSA also invited five UniSA nursing students on placement to attend.
Working with community members to dispel fears and phobias about what hep C is and isn’t and how it is and isn’t transmitted made the day really worthwhile and productive. The education sessions were 20 minutes long and the rest of the day was designed to involve activities that focused on promoting health and well-being, such as lunch. For example, ‘How to make a healthy meal in 5 minutes’, comprised of low-fat and inexpensive chicken and vegetable stir-fry, with ginger, chilly and soy with rice or noodles.
We also made cosmetics for foot baths and skin care that were provided by the Port Adelaide Community Correctional Centres ‘Women for Women’ program, which is supported by the Otherway Centre. We set up art activities and tarot readings, which were very popular and fun.
These activities allowed participants to learn and develop skills in health and positivity, and provided a place to ask questions about hepatitis C and housing over the course of the day. These activities also provided HCCSA worker and students the opportunity to work individually with participants from our priority populations to learn and better understand their needs and situations.
Shelter SA and HCCSA planned to keep the focus on the issues of hepatitis C and housing by weaving quiz questions and prizes in throughout the day to test participant’s knowledge about these issues. This successfully prompted questions about both areas throughout the day.
Everyone who attended received a HCCSA showbag with information resources such as The Little Book of Hep C Facts and The Little Book of Hep B Facts, as well as postcards, bookmarks, balloons, stickers, lolly bags, the DVDs ‘Turning Point’ and ‘Don’t Be Buntha’, and the CD ‘Tune In to Your Health’. Shelter SA and HCCSA borrowed the line ‘knowledge is power’ from ‘Don’t Be Buntha’ to encourage participants to access health and housing services. I emphasised to people attending to share the knowledge about hepatitis C that they have gained from the day, and work to promote community awareness and acceptance of hepatitis C.
The success of ‘The Living Well on a Low Income’ will be followed up in November [as this magazine goes to print] when HCCSA educators and volunteers—with the financial support of Uniting Care Wesley’s Forsyth Foundation—will be getting together with Shelter SA and approximately 36 other organisations to provide a creative and fun approach to education and information at the Homeless, Health and Housing Expo.
Making sense of hepatitis research papers
Reading–and understanding–an abstract can be very challenging because there are so many pieces of the puzzle to fit together. This article will focus on tips for reading and understanding an abstract.
General Tips for Reading and Understanding an Abstract:
An abstract is usually divided into seven sections. Start by reading the entire abstract quickly – highlight or note any important facts that are key points, such as the number of participants, overall effectiveness, etc. After a quick review go back and read it slowly and carefully. A natural inclination is to just read the conclusion section, but remember that a conclusion, at times, can be what the author wanted to prove and not necessarily the real facts.
The abstract discussed below is from the Association for the Study of Liver Diseases (AASLD) Conference 2007. This particular abstract is about HCV-796, a drug that is no longer in clinical development due to severe side-effects.
A very brief (one brief sentence) description of the study – this will give you an idea of what the study authors are trying to test or prove.
Example: Phase 1 evaluation of antiviral activity of the non-nucleoside polymerase inhibitor, HCV-796, in combination with different pegylated interferons in treatment-naïve patients with chronic HCV.
All the authors will be listed and sometimes the affiliations of the authors will also be listed. Look for reputable authors and medical institutions. The author and affiliation carry a lot of weight.
Example: S. Villano; D. Raible; D. Harper; P. Chandra; L. Bazisotto; G. Bichier.
3) Introduction or background:
A brief history of what is known about the topic under study and why the study is important.
HCV-796 is an inhibitor of hepatitis C virus (HCV) RNA-dependent RNA polymerase that has demonstrated clinical antiviral activity across multiple HCV genotypes when administered as monotherapy or in combination with pegylated interferon alfa-2b (PEG2b). We further evaluated HCV-796 when administered with pegylated interferon alfa-2a (PEG2a).
This is one of the most important sections because it spells out the original intent or design of the study. The aim should include definite end points that are carefully planned and executed. Look for prospective studies that are designed in advance with certain clinical outcomes.
Retrospective studies are studies that look back over time at a previous study or population. They are important for compiling information for future studies, but they can also be manipulated and do not carry as much weight in evidence based medicine as prospective studies.
As you have probably noticed some abstracts are formatted differently than others. In the example I have listed the ‘aim’ is included in the background information.
This section will give you information on patient characteristics, drug dosing and other valuable information.
Important questions to ask yourself when reviewing this section:
How many patients were enrolled in the study?
Larger studies carry more weight.
Outcomes vary widely depending on many factors. What were the patient characteristics?
Were they evenly matched by age, gender, race, genotype, viral load, degree of liver damage, biochemical markers and other important patient information?
Was the clinical trial randomized and blinded to prevent bias?
The gold standard of clinical research on humans is the blinded, randomized control trial. In this type of trial, patients are randomly selected. Randomization means that patients are randomly assigned – usually by a computer program – to a particular study group to receive the test drug, a standard of care drug or a placebo.
How did the researchers test their hypothesis and what tools did they use?
For example, are they using sensitive diagnostic tools?
Was the study designed to compare one drug against another drug, or against the current standard of care?
Was the dose of medication appropriate in both groups?
Evaluations were performed within a randomized, double-blind, Phase 1 study in adult patients with chronic HCV infection who were naïve to treatment. In one group, patients were randomized to receive oral HCV-796 or placebo Q12h for 14 days, and all were to receive PEG2b (1.5 mcg/kg) on day -1 (one day before start of HCV-796/placebo) and day 7. In another group, the design was the same except the PEG therapy was PEG2a (180 mcg) on day -1 and day 7. In each group 12-16 patients were to receive the active HCV-796 (500 mg Q12h) with one of the PEG therapies.
This section reports on the outcome of the study. It should break the information down by overall results and then by patient characteristics and medication dose. The results should also report the statistical significance, which is an indicator of how well the drug will work under the same circumstances in a different setting. This is usually reported as a p-value. P-value of < 0.05 is considered statistically significant. P=0.05 means that there is a 95% chance the drug will work in a similar patient population and a 5% chance that it will not.
If the abstract is testing a new medication, there should also be a brief overview of the side effects.
In this example you will note that the authors reported that the side effects of HCV-796 were typical of the side effects reports for Peginterferon therapy. However, we now know that early studies with small patient populations provide limited information and that studies conducted over a longer period of time with large patient populations give us the best information.
The mean baseline HCV RNA level was 6.4-6.5 log10 in each group and 71% of patients were infected with HCV genotype 1. For both PEG therapies, combination with HCV-796 reduced plasma HCV RNA levels to a greater extent than either PEG alone. At day 14, the mean reduction in HCV RNA for HCV-796+PEG2b was 3.4 log10 vs. 1.6 log10 for PEG2b alone. The mean reduction for HCV-796+PEG2a was 3.7 log10 vs. 1.1 log10 for PEG2a alone. For both groups, activity differed by HCV genotype. Mean HCV RNA reductions at day 14 for genotype 1 was 2.9 log10 for HCV-796+PEG2b and 3.2 log10 for HCV-796+PEG2a. For genotype non-1 the respective reductions were 4.4 vs. 4.7 log10. Combination of HCV-796 with either PEG therapy was generally well-tolerated. Common adverse events in all groups were those typically associated with interferons, including headache, chills, and myalgia.
Be careful because the conclusion can be greatly manipulated to fit the author’s needs. Refer back to the results and compare the results with the author’s conclusions.
The example we used is very straightforward and appropriate for the intent of the study. Always be careful, though, reading the conclusion – it is always better to understand the information in an abstract and come to your own interpretation and conclusion.
The combination of HCV-796 with either PEG2b or PEG2a provides similar antiviral activity across multiple HCV genotypes over 14 days of therapy. Results support clinical studies of more long-term administration of HCV-796 with either PEG therapy.
The more you practice reading an abstract the more you will be able to understand the information presented. Always use your critical mind when trying to interpret scientific data or any other source of information. And don’t be afraid to ask questions!
Medline's "Understanding Medical Research"
National Institutes of Health (NIH)
New York Online Access to Health
United States National Library of Medicine
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