- A Beginner’s Guide to Bleeding Disorders
- A Double Whammy
- A Lot to Learn to Live With
- Voices from the Front Line
- Healthcare Rights
- I’ll Be Fine!
- Awareness Week Review
- Big Drumming Finale!
This issue takes a look at medically acquired hepatitis C. This means a special focus on those people who contracted the virus through blood transfusions or blood products that had been contaminated with hepatitis C.
Please read their stories and let us know what you think of these and the rest of the magazine.
New Outreach Peer Education Program at HCCSA
HCCSA is excited to announce that we were successful in our submission for a three-year grant from the Non-Government Treatment Grants Program to establish an Outreach Hepatitis C Peer Education Program.
This program aims to provide hepatitis C peer education and support to people who currently inject drugs and who are at risk of, or are living with, hepatitis C. People who inject drugs are at greatest risk of contracting hepatitis C. Approximately 80% of existing infections and 90% of new infections are estimated to be due to unsafe injecting drug use practices.
From placing a hepatitis C peer educator at drug and alcohol rehabilitation sites on a regular basis over the past few years, we have had very positive experiences. This is the basis for the model for this program. The program will mainly run in metropolitan Adelaide, but will also include some rural settings.
There is considerable evidence that people who inject drugs face discrimination on the basis of their drug use, even in healthcare settings. As a result, many people who inject drugs have quite poor levels of general health which may be compounded by other social problems, and, in this context, hepatitis C may be only one issue in a long line of health and other priorities.
Funding for the new program, which will include a full-time program coordinator and 6 part-time peer educators, will allow HCCSA to expand our reach quite considerably among this hep C priority target group.
The coordinator of the program will be responsible for establishing the program; recruiting, training and supporting the peer educators; negotiating with relevant agencies in SA for the placement of hepatitis C peer educators in their agencies to regularly engage their clients in hep C education; and providing appropriate referrals, including linking their clients to HCCSA services.
By having hepatitis C peer educators in agencies which are well utilised by people who inject drugs, we hope to help make it easier for them to give hepatitis C greater priority in their lives, and give them greater access to hepatitis C prevention, treatment and care options.
What they are, how they work, and how they relate to hepatitis C
People with inherited bleeding disorders have varying needs for blood products. Some use blood products (see below) regularly, while others only use blood products occasionally.
Many have haemophilia, which is a genetic blood-clotting disorder which usually occurs in families, although in a third of cases it occurs in families with no previous history of the disorder. Haemophilia affects mainly males, but occasionally women as well.
Men with haemophilia can pass the haemophilia gene onto their daughters but not their sons. Women with the haemophilia gene are carriers, and may pass haemophilia on to their sons and the gene on to their daughters. Some women carrying the gene may have symptoms (symptomatic carriers) and bleeding problems.
Haemophilia A is the most common form of haemophilia, and is due to the deficiency of clotting factor VIII. Haemophilia B is due to the deficiency of clotting factor IX. The severity of haemophilia is determined by the level of clotting activity of factor VIII or IX in the blood.
The deficiency in clotting factor produces bleeding episodes, usually into the joints or muscles. These bleeding episodes, or ‘bleeds’, may have no obvious cause, or may occur as a result of trauma or injury, cuts, knocks or falls. The bleeding is controlled by an injection of the clotting factor into a vein. If internal bleeding is not treated quickly with factor treatment, it will result in pain and swelling.
Over time, repeated bleeding into joints and muscles will cause joint and tissue destruction, which leads to permanent damage such as arthritis, chronic pain and joint damage requiring surgery.
People with severe haemophilia bleed frequently into their muscles and joints, sometimes once or twice a week, and often from no apparent cause. They use large amounts of clotting factor concentrate as treatment throughout their life.
People with moderate haemophilia bleed less frequently, while people with mild haemophilia usually only bleed as a result of surgery or injury.
Another inherited bleeding disorder is von Willebrand disorder. This is the most common bleeding disorder, and affects both women and men. It is caused by a deficiency or defect of a blood-clotting protein called von Willebrand factor. Unlike with haemophilia, bleeding may occur in the linings of the mouth and nose rather than in the muscles and joints. Easy bruising, heavy periods and bleeding after childbirth can occur in some people.
Von Willebrand disorder can often be undiagnosed. Although more recently people with von Willebrand disorder have been encouraged to go to a Haemophilia Centre or haemophilia service for treatment, it has usually been managed by other health professionals in the community.
Most people with von Willebrand disorder have a mild form and do not need treatment unless they have surgery or an injury. People with severe von Willebrand disorder may have frequent bleeding episodes, and sometimes joint and muscle bleeds.
Some people with von Willebrand disorder can only be treated with clotting factor VIII concentrates made from human blood plasma which contains von Willebrand factor, while others can also be treated with synthetic hormones.
Before clotting factor concentrates became available to treat haemophilia in the 1960s, it was not uncommon for people to die from uncontrolled bleeding. With the arrival of concentrates, bleeds could be controlled with an infusion (injection) of the missing clotting factor.
Initially treatment was only available to treat bleeds as they occurred. This was known as “on-demand” treatment. However, this treatment does not prevent bleeding.
Since 1995, prophylaxis treatment to prevent bleeding has been available for children and younger people in Australia. Clotting factor is given usually two to three times weekly, to keep factor levels high enough to prevent bleeding. The availability of concentrates which can be injected at home has allowed people to manage their haemophilia themselves, and has reduced the need for such frequent hospital visits.
Many people growing up with haemophilia today have a normal life expectancy, unless there are complications. This means that the younger generations in Australia are less likely to experience arthritis and joint damage as they grow older.
Since the 1970s, people in Australia have used several different products for their treatment. Cryoprecipitate was a clotting factor concentrate made from the plasma of a single human donor, or pooled from a number of human donors. It is no longer used in Australia.
Other clotting factor concentrates were manufactured from the pooled plasma of many human donors and included factor VIII, factor IX and Prothrombinex (which was mainly factor IX, but also included factor II and factor X). Pure factor IX was not available until the early 1990s. Over the years, improvements to the quality and safety of these products have been made regularly.
Recombinant factor is a clotting factor made by genetic engineering, containing little or no human product.
The Emerging Problems
During the 1970s and 1980s there was an awareness that blood products could cause viral hepatitis in people who used them. An Australian Red Cross Service study published in 1982 found that 2% of people who received blood transfusions developed post-transfusion hepatitis.
However, people with bleeding disorders had a higher risk of coming into contact with viral hepatitis through blood products: many used blood products regularly, and pooled donor concentrates could contain hepatitis virus even if only one of the thousands of donors had viral hepatitis.
In 1982 Sydney haematologists and gastroenterologists published a study of 243 people with haemophilia. Although treatment had been mainly with single donor cryoprecipitate with only some pooled donor concentrates, 27% of the people had developed what was then called non-A non-B hepatitis, or what is now known to be hepatitis C. They were more likely to have this hepatitis if they had severe haemophilia, meaning they had to use more blood product more often than if they had mild or moderate haemophilia.
When hepatitis C antibody testing was developed and introduced in 1990, it was found that the majority of people with haemophilia had hepatitis C. The number of people with bleeding disorders who now have hepatitis C in Australia is currently being collected for the Australian Bleeding Disorder Registry, but is not yet known.
It is thought that up to 85-90% of people with haemophilia who were treated with plasma derived blood clotting factor products may have been exposed to the hepatitis C virus before the late 1980s. Exposure may have occurred multiple times if they were using concentrates regularly. Some of them were children at the time. Some may have cleared the virus naturally from their blood, especially young children who are more likely to clear it than adults. Others may have cleared it with hepatitis C antiviral treatment.
Discovering that so many people with bleeding disorders had been exposed to HCV was an added blow to the bleeding disorders community. In 1985 when the HIV antibody test was introduced, about 30% of people with bleeding disorders using blood products at the time were found to test positive to HIV. Those with severe haemophilia were more likely to be affected. Some people with bleeding disorders now discovered they were co-infected with HIV and hepatitis C. Some were co-infected with hepatitis B as well. Some of these people were children or teenagers.
Co-infection with hepatitis C and HIV, or with hepatitis B, may cause liver damage to occur more quickly. If they have liver damage, people who are co-infected may find it more difficult to tolerate their HIV drugs.
Blood Product Safety
Various steps have been taken over the years by regulatory authorities, blood banks and manufacturers to reduce the safety risks of clotting factor products made from human plasma. The hepatitis C virus was not identified until 1988, but Australian blood banks introduced hepatitis C antibody testing of donor blood in February 1990, as soon as the test became available.
By May 1985, the impact of the HIV epidemic had caused the Australian Red Cross to add legally binding questions to their donor questionnaire and interview which excluded people who had ever injected drugs, which also turned out to be one of the key risk factors for hepatitis C.
Although HIV could be eliminated from blood products with heat treatment at 60°C, it was necessary for manufacturers to increase heat treatment to 80°C to inactivate hepatitis C. In Australia, factor VIII that was heat-treated to 80°C became available in 1990, and factor IX in 1993.
Other improvements to safety have continued to be made. In Australia, a major development to minimise the risk of known and unknown blood-borne pathogens, including hepatitis C and variant Creutzfeldt Jakob Disease, in treatment products was to supply imported recombinant clotting factor to people with haemophilia A and haemophilia B.
Recombinant factor VIII was first made available in Australia in the mid-1990s, when there was a shortage of factor VIII derived from human plasma, and was rationed to children and younger people with bleeding disorders who did not have HIV or hepatitis C. Recombinant factor IX became available later under similar arrangements. In 2004 Australian governments agreed to fund access to recombinant products to all people with bleeding disorders, regardless of their age or viral status.
There is currently no recombinant clotting factor treatment suitable for people with von Willebrand disorder. Those who must use a factor VIII product must use one made from human plasma which contains von Willebrand factor.
Managing hepatitis C and haemophilia
People with bleeding disorders in Australia are encouraged to get treatment and care for their bleeding disorder from a specialist haemophilia centre and to have their bleeding disorder reviewed regularly, at least once a year.
Some people with bleeding disorders also see their general practitioner (GP) for other health care. With improvements to haemophilia treatment, many people can treat themselves at home and can have their blood clotting products delivered to their home or at a location convenient for them.
Some, especially those with mild haemophilia or von Willebrand disorder, do not often need blood clotting products. Unless they have a major bleeding episode or an accident, give birth or need surgery, they do not need to come into the hospital for treatment and may have little or no contact with their local haemophilia centre. However, this can limit opportunities to check the liver health of those with hepatitis C and inform them about new developments.
A look at living with both bleeding disorders and hepatitis C
Before blood-clotting concentrates were made safe and free of the hepatitis C virus, most people with bleeding disorders who were treated with them were exposed to hepatitis C. Many were children or teenagers at the time. Some of these people have cleared the virus naturally, while others have done so through antiviral treatment. Some people were also co-infected with hepatitis B, and others with HIV.
For those with bleeding disorders, being diagnosed with hepatitis C as well had a profound psychological impact. In the mid-1980s, Australians with bleeding disorders were deeply shocked by the discovery that around 30% of them had acquired HIV from contaminated blood products.
Some were still coming to terms with this when, in the early 1990s, many found that they had acquired hepatitis C—again from contaminated blood products. In some cases, given haemophilia’s genetic inheritance, this affected multiple members of the same family.
Many people had very negative experiences being told that they had hepatitis C, and some only found out their diagnosis by accident, years after it had been made. Some were angry at the way they had become infected.
Dependent on blood products to survive, many felt that these same blood products could not be trusted to be safe.
A significant number of people felt at the mercy of health bureaucrats making decisions based purely on economic factors, and a great many felt—and still feel—that acknowledgement of the health system errors by the authorities would go a long way in helping those with bleeding disorders deal with their anger and frustration.
For people living with both moderate or severe haemophilia and hepatitis C, this combined burden—perhaps exacerbated by HIV co-infection as well—can lead to a level of unmanageable disability by the age of 35 or 40.
Recently, the various Australian haemophilia foundations and haemophilia health professionals have seen more cases of serious liver disease in those people living with both a bleeding disorder and hepatitis C. A number have died.
The concern is that many with bleeding disorders might not know their current hepatitis C or liver health status. A survey by the Haemophilia Foundation Australia found that a large number of their members did not know about or understand their health in relation to hepatitis C. When they were first diagnosed in the early 1990s, some people were even told not to worry about hepatitis C.
It was this concerning state of affairs which led to the National Hepatitis C Needs Assessment Report for people with bleeding disorders: “A Double Whammy”: Living with a bleeding disorder and hepatitis C.
One of the many interesting findings was that most people with bleeding disorders had not experienced much hepatitis C-related discrimination, but that this was due to the fact that most had not told many people about their HCV status.
Many were concerned about the stigma in the community, where they felt that hepatitis C was associated with injecting drug use and casual unsafe sex. This privacy self-protection meant that useful social services were often not used. Of those who had disclosed their hepatitis C status, many had suffered discrimination in healthcare settings, the workplace, and residential care facilities.
The Double Whammy report makes it clear that there is a real need for confidential counselling and support services for people living with bleeding disorders and hepatitis. This support and counselling also needs to be extended to their partners and families.
Other priorities included: improving health, getting better hepatitis C information, getter better treatment, improving community education, getting financial help, and safeguarding the blood supply for future generations.
The report is available from our library. You can also contact Haemophilia Foundation Australia for more information.
Report extracts and data from “A Double Whammy”, researched and written by Haemophilia Foundation Australia. Extracts used with permission.
For interviews from “A Double Whammy”, go here.
Haemophilia Foundation Australia
1624 High St
GLEN IRIS VIC 3146
Phone: 1800 807 173
Growing up and living with hep C and haemophilia
Paul is a volunteer with Haemophilia Foundation Australia (HFA), and Haemophilia Foundation South Australia (HFSA), and lives with both haemophilia and hepatitis C. He talked to the Hepatitis C Community News about his experiences and what he wants for the future.
I was about five when I was first diagnosed with haemophilia. Soon after that my dad got involved with HFSA. He was on the committee for a number of years, and I’d seen and participated in the things that he was involved in while he was there—not the paper-shuffling side of things, I guess, but the get-togethers, parties, and the support, all that side of things—and I really liked that.
When I was old enough, and my work and family life had fallen into place, I felt it was time to get involved, give something back, share some of my experiences and hopefully make things a bit easier for other people.
I have been involved with the HFA Youth Committee for about six years, and have been the chairperson for around four years. I have been to the international Congress of the World Federation of Hemophilia, where all of the different countries’ haemophilia foundations are represented, in Vancouver two years ago. I was invited as a guest speaker, to talk about the HFA youth program.
Last year I went to Thailand, as part of the twinning program with HFA and the Thai Patients Club, which is the patient part of the national haemophilia organisation in Thailand. We are trying to help them to strengthen their organisation and offer support. It was a real eye-opening experience to see the difference in treatment standards between Thailand and Australia. The other thing that you notice is the impact for people who have limited resources available to them for their healthcare, and the cultural differences between our countries, as well as what we expect from our healthcare systems.
What role do the Haemophilia Foundations play?
HFSA is the state organisation and it provides support for people with haemophilia and other bleeding disorders in SA. We have activities, offer peer support, and do different kinds of advocacy work when it is needed within the state. HFSA is a member organisation of HFA, Haemophilia Foundation Australia, which represents people with haemophilia, von Willebrand disorder and other related bleeding disorders and their families. They try to improve treatment and care through representation and advocacy, education and research. HFA is also involved in various international efforts to improve access to care and treatment for people with bleeding disorders around the world.
Tell us a little more about your own experiences.
I have got hepatitis C. I was about 15 when I found out, when they first started testing for it. At that stage it was quite new and there was little knowledge, information or understanding about it. I was told, ‘Yeah, you’ve got haemophilia and now this other thing,’ but at that stage nobody really knew what that involved. It just wasn’t a big deal at the time—hep C was something in the background while I dealt with my haemophilia.
It’s been more in the last five or six years, with greater education and better information in the clinics, that I look back on my life, and on things I’ve experienced, and can now see that a lot of things were probably symptoms of the hep C.
Now that hep C is known about, and testing is done, do young people still worry about it?
There are some younger guys, in their early 20s, who have been exposed to hep C through plasma-derived clotting factor products used to treat their haemophilia. But now with better donor screening of blood and manufacturing processes which can get rid of hepatitis C and other blood-borne viruses, blood products are much safer. And, in any case, most people with haemophilia now use safer recombinant products which are not made from human blood. There has been a cut-off point so younger people don’t have the same fears of contracting Hep C through contaminated blood products necessary for their treatment as before.
Most people with haemophilia are diagnosed when they are babies or toddlers. I was diagnosed when I was five, which was pretty late. Today the majority of the young kids are on prophylaxis or preventive treatment. They are given clotting factor two or three times a week, so that they always have clotting factor in their system, to minimise the risk of a major bleed, reducing joint and muscle damage. Most kids are taught to give themselves their factor intravenously. From their point of view it’s good they have access to these safer recombinant products and that blood products are much safer too than they were before, because it only takes one bad batch.
What about you?
Prophylaxis is used for older people now, too. But for me, I never had the option when I was younger, and now I don’t really entertain the idea. As you get older, you learn your limitations and how to be careful. Your muscles develop which helps protect your joints. So I don’t personally feel the need for prophylaxis at this stage. However, I still need to treat myself with clotting factor when I have a bleed.
There are some older guys who treat prophylactically, but it’s more of a personal choice as you get older and whether you and your doctor feel it’s better that way. Some guys get to their teens, get a bit rebellious, and let their treatment go for a while—then they might have a major bleeding episode, and that forces them to think about it, and some of them go back on prophylaxis to avoid that happening again.
What are your experiences with getting access to treatment for hep C?
If you have already had treatment before, it can sometimes be hard.
I had combination therapy four or five years ago, and it took me two years to get compassionate access to pegylated interferon treatment. It’s really frustrating when you want treatment, and there’s so much of a government push to get people treated, but due to their treatment guidelines and policies it can be really difficult if you’ve had previous treatment. That’s one of the things HFA has been advocating to governments about.
The way the hospital system works, with bookings and appointments—if you’re feeling down from the treatment, and then you get stuck waiting for ages to see someone, it’s not good. It would be nice if there was a better case-by-case needs-based system.
And yet it was the government-controlled blood supply that was the source of the hep C in the first place.
Exactly, the main bone of contention is that all of this has come about through blood products which were infected. Many people with bleeding disorders got hep C through something that was meant to be helping them. We were expecting these products to help our haemophilia and to be safe. But they weren’t, and now there are the lifelong impacts to deal with—sometimes it feel like ‘Sorry, fellas, too bad.’
Ages ago, when there was a class action for compensation for some people with hepatitis C, I rang up the law firm running it, and they said they were only considering people who got hep C through blood transfusions and things like that, and not considering people who got it through contaminated clotting factors. One of the arguments for this is because clotting factor was made from the blood of many donors and it is hard to prove who caused the hep C.
So what are the financial issues?
A lot of people with haemophilia and hep C really struggle to stay in work. You have to take time off for bleeds and if you have symptoms of hep C as well, like fatigue and nausea and liver pain, you may not be able to hold down a full-time job. Some guys have had to stop working in their 40s, which is hard on them and their family, if they have one.
Getting treatment for hep C is a real priority. But the reality of treatment can be daunting, with taking time off work for clinic appointments and managing the side-effects from treatment. It’s hard enough for someone who has a caring, supportive partner or family to help to them through treatment, but doubly hard for a single person without the caring or support of others.
It could be 18 months where you don’t have a job or have to work part-time. This is not really an option for a lot of people who are struggling to support themselves, or families who are trying pay off a mortgage. Then there are the hidden costs of treatment—travel, parking, other medications, pharmacy costs for the hep C treatment even if it is subsidised by the government, visits to your GP to keep tabs on your health while you’re on treatment, special diets to manage the side-effects.
If you are working and don’t have a healthcare card, the costs really mount up. And if you’re on a pension, it’s really hard to afford it all. And if you are not eligible for subsidised treatment, the costs are pretty well unaffordable.
So it’s about finding a way that people can maintain a normal lifestyle and have treatment or manage their symptoms.
And does having both hepatitis C and haemophilia make it even harder?
Of course, when there is more than one issue it’s hard because you don’t know which problem is causing what symptoms. When you get treatment it can make it even harder, as treatment can cause its own new set of side-effects. You wonder whether you’re having a bleed, or if something else is going on—it makes it really hard.
And you’ve got to think about the other people who have haemophilia, and then they got hep C, and then HIV—they have to deal with all of that on a daily basis. The fact that this has happened with hep C and HIV makes some people pretty suspicious about what else might be waiting in the blood supply—the reason we got recombinant clotting factors funded by the government three years ago was because of the risk of other things coming through the blood supply, things like variant Creutzfeldt-Jakob disease. Until then these safer recombinant products which contain no or very little human or animal material in them were only available to people who had not previously contracted a blood-borne virus through their haemophilia treatment. That was pretty discriminatory.
But now everyone has access to recombinant clotting factor to treat their haemophilia. But it’s hard having to use these sorts of treatments—it’s in the back of your mind what’s going to happen next and what’s the next thing you’re going to have to deal with.
Interview by James Morrison
‘I didn’t know until a year ago that I have hepatitis C. It was a shock the way I found out after all these years. I haven’t needed treatment for [Von Willebrand disorder] for many years. It is really hard to deal with it. I think of all the times I cleaned up blood spills with my grandchildren, and of my husband and children. When you find something like this at my age it is really hard. I didn’t know where to turn. I only used blood products a few times; it is just not fair.’
‘I have haemophilia A and hepatitis C, and feel very unwell at times. My life is pretty shithouse, actually. I live with pain because I have gone without treatment for so long and the hepatitis is flaring up all the time now. I am not a candidate for treatment, so the future doesn’t look too bright for me.’
‘Even my own children have been over the top about infection control issues, and it was years before my husband would kiss me after we found out I had hepatitis C. I found that my personal relationships deteriorated as my hepatitis C progressed to cirrhosis. I think this is because I couldn’t keep up with people, and they didn’t understand the illness. I didn’t have the energy for others and they didn’t seem to care about me and I was fairly depressed about it.’
‘It’s all about quality of life. Ours is really poor now. I am self-employed with a wife and two kids. I had two lots of unsuccessful interferon treatment for hepatitis C. Not sure if I can face combination therapy. We had to sell the house because of financial problems because I couldn’t work a couple of years ago. I worry that I may not be able to look after my family. I have the disease, but the others are the ones suffering.’
‘I still feel like an outcast—some of my teachers and friends discriminated against me when I was at school because of my haemophilia, and then when my parents were told I had hepatitis some teachers were pretty bad about it, so now I don’t tell very many people at work about the hepatitis if I can get away with it, and luckily I am not sick. But they can see my haemophilia.’
‘I can’t get work because of both my haemophilia and hepatitis C. The bleeds and hepatitis C fatigue stop me from working. I lost the last job because I had to take hours off for treatment. It affects relationships also. But I reckon hepatitis is worse than haemophilia because the discrimination is worse. The dentist steers clear of me, leaves me to the last patient, and it always looks like he has cleared the surgery before I arrive.’
‘I have mild haemophilia, but that is not a problem, as I rarely have bleeds any more. Recently I had the choice of two jobs: one with a lower salary, and one with twice as much money. The higher-paid one fits well with my competence, tertiary education, career goals and interest. However, I accepted the lower-paid position with less responsibility as I knew I would struggle to manage the additional hours and sophisticated input required as my health is too unreliable these days. My wife and I have decided not to have any children because of the health problems I have because of my hepatitis C, but we have a mortgage and I remain concerned that I will leave her with financial commitments that she cannot meet.’
‘Uncertainty about my health is the reason I didn’t pursue career advancement and seek higher-paid positions. I have had treatment for hepatitis C, but it was not successful so I am not sure what my future will be. I didn’t finish my university studies, and now that I look back on it and don’t like to admit failure, I know it was because I just wasn’t well enough to do all the work. I couldn’t concentrate and I was sick fairly often and I became depressed at one time.’
‘Unfortunately we’ve learned as a result of all these things. There was a time when the doctor was saying, “Hey, we’ve got this new product. You can take it home and put it in the fridge and you can do it yourself!” And we thought, great! Nobody ever said, “Have you thought there might be a problem with that?” And we’ve had our fingers burned by blindly accepting what the medical profession are telling us is good for us. And we know now it’s not always the case. Actually, they don’t know. Often.’
‘What else is lurking in my blood that I don’t know about?’
‘I’ll tell you what it did to me, what it was like, is back in the 1980s, when HIV was the big issue of the time and the daily newspaper came out. I was at work, and it was pretty busy. My paper was delivered to me and I opened it up like that and I looked at it, and emblazoned across the top it had ‘Haemophiliacs doomed!’ and then it said, “It has just been announced that haemophiliacs in Australia are doomed to be infected by the HIV virus which will lead to AIDS.” And that was shattering. I just said to the boss, “Look, I’m going home.” “You can’t bloody go home, you know!” I walked out the door. And I got in the car to drive home, and I was just physically shaking, like I couldn’t drive home. I had to sit there for about 15 minutes before I could actually stop shaking just to drive home and tell my wife.’
Interviews from “A Double Whammy”, researched and written by Haemophilia Foundation Australia. Extracts used with permission.
Improving the Health System for Patients
Australia’s state and federal health ministers have now endorsed the Australian Charter of Healthcare Rights. This charter was developed after wide consultation by the Australian Commission on Safety and Quality in Health Care (ACSQHC), and specifies the key rights of patients and consumers when seeking or receiving healthcare services.
Mr Bill Beerworth, Chairman of the Commission, explained that “the charter summarises the basic rights that patients and consumers are entitled to receive when accessing health care services throughout Australia. These rights are access, safety, respect, communication, participation, privacy and comment.”
The charter applies to the whole healthcare system. It allows patients, consumers, families, carers and service providers to have a common understanding of the rights of people receiving healthcare. It is applicable to all health settings anywhere in Australia, including public hospitals, private hospitals, general practice and other ambulatory care environments. Since people living with hepatitis C have often experienced discrimination from some GPs, nurses and other health care workers, it is especially relevant to this community.
All health care organisations should use the charter as the basis for informing patients and consumers of their rights. The ACSQHC will support the inclusion of the charter in accreditation systems and educational curricula to ensure it becomes an important part of the health care system in Australia.
The ministers’ endorsement followed an extensive national consultation process. Consumer groups which contributed to the charter have welcomed its release.
“This Charter provides the framework for health care providers to give consumers high-quality care, and for consumers to actively seek the best care,” said Consumers Health Forum of Australia Executive Director Helen Hopkins.
“Because it has been shaped by all stakeholders, it will benefit everyone and will create an environment for better quality care. We look forward to working with the Commission and the providers on its effective implementation.”
The Commission’s role as a national leader in safety and quality will help to ensure that the Australian Charter of Healthcare Rights has a key role in driving safety and quality improvements and supporting a health system that focuses on the needs of individuals.
The ACSQHC has also released a draft report entitled Reducing harm to patients through healthcare associated infection: the role of surveillance. Compiled by 51 infectious disease experts from across Australia, this report is intended to provide up-to-date scientific and clinical advice on how to reduce hospital-acquired infections. It focuses on the use of the surveillance of processes of care, and on the infection rates of certain microorganisms in a variety of settings.
ACSQHC chief executive Professor Chris Baggoley said “Hospital-associated infections are a public concern. It is estimated that there are 200,000 such infections in our hospitals each year in Australia. They cause patients pain and suffering, and some patients even die as a result.”
Given that many people living with hepatitis C often have to spend a lot of time in hospitals, GP surgeries and other health care settings, any moves to make these environments safer are to be encouraged.
For more information on the charter or the draft report, please visit www.safetyandquality.gov.au or call (02) 9263 3633.
It’s possible to be too positive!
A significant new study has been released by the National Centre in HIV Social Research, based at the University of NSW. The study, by Carla Treloar and Max Hopwood, looks at the way people cope with hepatitis C treatment, and the problems that can arise because of unrealistic expectations of the treatment going smoothly.
In Australia, people living with hepatitis C are currently authorised to undergo only one ‘‘free’’ course of hepatitis C treatment. Any additional courses will not be subsidised by the Australian Government Pharmaceutical Benefits Scheme.
However, the impact of the treatment’s side-effects on patients’ ability to complete treatment is significant. Hepatitis C treatment is associated with decreased health-related quality of life, and the most commonly cited reason for discontinuation of hepatitis C treatment is intolerance of psychiatric side-effects, such as the depression which occurs among 20-30% of hepatitis C patients receiving treatment.
This means that there is a real need to adequately prepare and support patients through treatment, in order to ensure the best treatment completion rates and the best viral response outcomes.
Research across a range of health topics has consistently demonstrated that people tend to believe that their risk of adverse events is less than their peers. This is colloquially illustrated in the phrase ‘‘it won’t happen to me’’. Termed unrealistic optimism in the psychological literature, this phenomenon has been demonstrated to be largely unrelated to age, sex, education and occupational prestige.
Unrealistic optimism is important in hepatitis C treatment if patients believe they are unlikely to suffer from treatment side-effects, or believe they are doing enough to protect themselves from adverse side-effects.
These optimistic biases in perception can lead to delays in seeking assistance, for example, or to refusal of assistance with treatment-related depression. This could obviously have a significant impact on an individual’s quality of life during treatment, or even lead to more serious outcomes such as suicide or other forms of self-harm.
One purpose of this study—entitled ‘‘Look, I’m fit, I’m positive and I’ll be all right, thank you very much’’: Coping with hepatitis C treatment and unrealistic optimism—was to explore patients’ expectations of hepatitis C treatment.
Patients with overly optimistic expectations of their ability to cope with treatment-related side-effects may be less prepared for their impact and may be more vulnerable to treatment discontinuation. To investigate this, Carla Treloar and Max Hopwood made two broad enquiries. Do healthcare workers in hepatitis C treatment clinics observe unrealistic optimism in their patients? And does unrealistic optimism affect patients’ decisions about starting treatment, their preparation for treatment and their coping with treatment side-effects?
The study was exploratory: it looked to see whether descriptions of unrealistic optimism were spontaneously mentioned in participants’ interview transcripts, rather than asking specific questions on the issue.
Patients reported that they felt that information and advice provided in pre-treatment counselling sessions was not relevant to them, since they felt that they would be ‘‘fine’’ as far as treatment side-effects went. Patients also reported that they felt they would not be at risk, and that they would be able to cope with side-effects. They also said that because they had not experienced mental health problems in the past, they would be unlikely to experience psychiatric side-effects during hepatitis C treatment.
Healthcare workers also identified similar processes and impacts of unrealistic optimism. Delays in seeking assistance could be attributed to optimistic biases in patients’ judgments.
The extent to which unrealistic optimism is demonstrated by patients undergoing hepatitis C treatment, and the impact of this phenomenon on coping and help-seeking requires further study. In practice, healthcare workers assisting patients to prepare for treatment, and those involved in managing treatment side-effects, should be aware of the potential for unrealistic optimism to impair or skew judgments about vulnerabilities to side-effects, and also to delay the seeking of help.
Part of this may well be due to the tendency for humans to overestimate others’ risk-increasing behaviours, and to overestimate their own risk-decreasing behaviours. Although a positive ‘bias’ in perception has been shown to help people cope with stressful events, healthcare workers need to keep the findings of this study in mind.
Adapted from ‘‘Look, I’m fit, I’m positive and I’ll be all right, thank you very much’’: Coping with hepatitis C treatment and unrealistic optimism, published in the journal Psychology, Health & Medicine, May 2008. A copy of the full article is available from -our library.
A summary of what was achieved
- Over 200 community groups from 47 countries participated
- World Health Organisation spoke at the Geneva global launch
- Launch of the Hepatitis Atlas– a compendium of hepatitis B & C statistics
- 12 specialists were recruited to the Global Public Health Panel, including Greg Dore from Australia
- Endorsement from several supranational organisations was gained
- Tens of thousands of visitors from over 135 countries visited the global website at www.aminumber12.org
- Over 57 million people were reached through over 750 pieces of media coverage around the world
- 300 billboards worldwide featured the ‘Am I number 12?’ logo, including nine international airports, and major locations in London and Times Square.
- An editorial appeared in the Lancet
- Messages of support were received from six governments around the world, including Australia
- Scotland’s government was the first to officially sign up to the “12 Asks of Government”
- Extensive coverage (over 100 pieces) in print, radio and television media.
- TV highlights included SBS World News, a feature story on SBS’s Living Black, and stories on the Seven Network in Queensland and Sky News Australia.
- 18 community, clinical, research and public health organisations endorsed the campaign
- Over 75 campaign events took place both nationally and within each state and territory
- A message of support was received from Health Minister Nicola Roxon. (Both the ’12 Asks’ and Nicola Roxon’s response are available on the Hepatitis Australia website at www.hepatitisaustralia.com)
- The musician Criston Barker was recruited as the campaign spokesperson
- Strong links were established with the music industry
- 84,000 hepatitis resources were distributed to every community pharmacy in Australia and Pharmacy Guild newsletters ran features on the campaign
- 155,000 postcards and 50,000 stickers were distributed via our primary networks
- A briefing from the World Hepatitis Alliance regarding plans for 2009 has recently been received and is being reviewed currently.
Hepatitis C Needs Assessment
A triangulation of qualitative and quantitative methodologies has been used to characterise the hepatitis C information, education and support needs of people with hepatitis C. The data collection phase of the project was closed by the end of June. 10 focus groups were conducted as well as individual telephone interviews. Over 230 people responded to the questionnaire. The data analysis and report compilation process has just started.
Looking back, looking forward
Last issue we gave a brief report of the concert which concluded our Rhythm Exchange project. We feel that it is one of our most successful community projects so far.
Emmanuel Photakis has worked with the Council to record both the rehearsals and the final concert, and has now produced a DVD which includes the show, and behind-the-scenes interviews and insights into how everything came together.
When did you first get involved in this project?
A friend of mine, Luke, approached the whole class about this project he’d heard about—filming a concert and interviews with the people involved. It’s a documentary about hepatitis C, and about three different communities—Afghani, Sudanese and Vietnamese—who were performing at this concert. I put my hand up, and I became editor and director of the project.
At that time how much did you know about hepatitis C?
To be honest, I didn’t know a lot about hepatitis C before this. I’d really turned a blind eye to it, but since being involved in this project I’ve really regretted that. I think it’s really great that people have done these events, and given other people the opportunity to find out.
So how much do you think you’ve learned along the way?
A lot! One day when I went to film some interviews at the Hepatitis C Council there were photos of people, and their descriptions of their hep C in their own words. Getting inside the minds of those people, seeing just how hard it really is, was so useful. And I’m just so glad that there is treatment available, because it would be terrible without it. Who knows what the world would be like? I used to think there was no treatment, but it’s really good to know I was wrong.
What about the drumming project?
I think it’s been very effective, especially with the sponsorship we got from the government and others. It’s been really good for the people themselves who were involved in the project. It’s really raised their awareness, like with me. As Robert Petchel said, they don’t actually play any songs about hepatitis C. But it’s a disease, and we learned about it along the way, and [the musicians] were here to help fight it.
Looking at the interviews, you see the smiles getting bigger, people getting more and more into it. The enthusiasm is amazing. You saw that developing as the project went along. Like, when we started, a lot of the Sudanese participants were really shy. But once we started the drumming, people were really getting into it. And that’s the thing I love about it—once they’re up on stage they’re completely different people.
I couldn’t believe how, after six weeks, everyone played together so well. And the way you educators got up on stage as well, that was great!
What’s your background in media arts?
I’m 18, and at the moment I’m doing MAPS, media arts production skills, which is a film and TV course. A lot of the people doing this course have gone on to be camera operators, directors and producers, film-makers. I’ve worked on a show called Hellenic Presence on Channel 31, which is a Greek show. I’ve also worked at Glendi Greek Festival, doing the big video screen there, which was a really tough challenge. Don’t know how we got there in the end, actually.
At the moment I’m making a documentary about the history of TV production in Adelaide. That’s really gone downhill in recent years. Personally, I’d like to get into TV and get some more local production going in Adelaide. Or maybe I’ll move interstate to work for one of the bigger networks. It’s a pity Big Brother got canned, actually, because that employed something like 80 camera operators.
I’d like to work on a big TV production. We don’t get many of them in Australia, which is pretty sad. But my dream would be to direct one of those, or be the video switcher, something like that.
Would you be interested in other hepatitis C education projects?
Yes, definitely. I’d love to do more to help people in the general public realise just how big and how serious this disease is. We can make life better for people. Maybe we could get the whole MAPS class involved, which would be great.
Are there any other media the Council could be using to get our message across?
Radio and television, though obviously that’s very expensive. An even bigger fund-raising concert—maybe use more communities—would be great. Or a Festival Fringe act. All just to get the message out.
How did the other MAPS students feel about it?
The other students involved got a lot out of it—they enjoyed themselves, and they learned a fair bit about hep C—so it was a good experience for everyone.
Thanks for giving the five of us this opportunity—not many film students in SA get this sort of opportunity, filming a concert and a documentary. We’d love to work with you again in the future.
Well, I’d just like to say it’s been a real pleasure working with you. Thank you!
Here some of the other participants explain their own involvement in the project.
Phil Jones: Drum Tutor
I like working with different communities, because each community group has something different to offer. I mean, this is what Australia is all about: multiculturalism, different people offering different things. So I get to learn a little bit about different cultures, and pass on some Australianisms. They were a great bunch of people, so my job was really easy.
Robert Petchell: Musical Director
I thoroughly enjoyed all the different musical interests that were brought to the project, and the challenge was how to bring all of that together. But we had great tutors, who really gave of their energy, and I was able to build from that.
Hoa Nguyen: Vietnamese Community in Australia (SA)
I was here to co-ordinate the musical group and working with the peer educator from VNCASA, just getting everybody to come along. For myself it was a challenge, helping the Vietnamese community being involved in something big like Hepatitis Awareness Week.
The guys participating really liked it, working with the other groups and being part of the concert. A lot of adrenaline rushing there. And because it’s such a hard target group to get together, usually. I was really pleased with the number of participants, and how much [hepatitis C] information we were able to get across.
Lola Aviles: RASA – PEACE Project
My role was to facilitate the links between the Hepatitis C Council and the various communities involved in the project. This was to help the Council with its understanding of the communities involved, but also helping explain to the people in those communities just what the project was about and who was who.
I was really excited by the project—it’s one of the best I’ve been involved in for quite a while. You could really see the energy of the people taking part. And to see the Afghani women, for example, getting involved, getting up on stage, was great. And helping people find out about hep C and the Council, and also having fun in doing so, was really good.
Leslie Wightman, Hepatitis C Council Educator
We just really wanted to spread information about hepatitis C and the Hepatitis C Council through those communities, and we wanted to do it in a really original way, so we came up with the idea of drumming. It’s quite a common musical thread through many communities, and in the end we were able to support this really dynamic, generous project.
Zia Abrahamzadeh, Afghani Community Educator
I’m a community educator relating to hepatitis C, HIV and problem gambling. With this particular project, with the tabla or drumming, my role was to co-ordinate the Afghani women’s group. It was my job to make it a good time for them, and to make time for them to come and practise, and to get them to the sessions and back.
It was a great experience for everybody. The Afghani women originally said they’d come and practise, but they wouldn’t perform in public. And that was fine. But then they started wanting to perform with everybody! They got much more confident, which was great.
Yuggu Zechariahsebit: Sudanese Community Educator
It has been a really nice time, working with the Hepatitis C Council and the other communities. I learned so much about making relationships with people from other communities, and gained so many skills about working together.
The DVD will be available soon from the Council library.
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