Contents
- National Strategy
- News in Brief
- Complementary Therapies
- Alcohol and the liver
- Genotypes in Australia
- From Doug’s Desk
- Indeterminate tests
- Aushep 8 Diary
- Mail Bag
National Strategy
1st National Hepatitis C Strategy: Overview of State Consultations
As many of our readers will be aware, public forums were held in the States and Territories for the 1st National Hepatitis C Strategy. David Lowe has provided an outline of the key points raised in these consultations. Two dominant themes emerging from the consultations were: the public perception of hepatitis C and discrimination.
Hepatitis C is perceived as mainly affecting injecting drug users, and thus the general community do not see it as posing a threat to them. This perception, coupled with stigmatisation associated with people who inject drugs (PWID), has resulted in low priority being given to the hepatitis C epidemic. Unless these underlying issues of public perception, stigma and drug policies are addressed, significant progress in controlling the epidemic is difficult.
Participants called for the Strategy to place emphasis on dealing with discrimination against people with hepatitis C and those at risk, particularly PWID. Strategies developed around discrimination issues should focus on the general community and health workers.
There was feedback from the consultations that while it was acknowledged that PWID have the highest risk of acquiring hepatitis C, there still needs to be greater attention to the needs of the following groups: people who no longer inject drugs; culturally and linguistically diverse (CALD) populations; indigenous Australians; people with or at risk of acquiring hepatitis C living in regional, rural and remote areas; the tattooing, skin penetration and beauty parlour industries; and people who acquired the infection through a medical procedure.
The need for national leadership concerning the situation in prisons and juvenile justice centres was also expressed in all consultations – relating to access to both education and prevention, and care and support.
Key points of feedback on the 5 challenge areas included:
Challenge 1. Reducing the number of hepatitis C infections
Feedback broadly supported peer education for PWID; general community education to obtain support for harm minimisation programs; access to the full range of injecting equipment and safe injecting places; and the need for drug law reform.
Challenge 2. Improving treatment and care for people with hepatitis C
There is a need to distinguish between ‘clinical treatment’ and ‘care and support’, with greater emphasis on the latter. Access to treatment was the key issue in this challenge due to concerns regarding confidentiality, stigma and discrimination, particularly for PWID, and for those in rural and remote areas.
Other areas of concern in this challenge included delays in the approval process for new drugs; the inadequacy of pre and post test counselling; limited funding and lack of strategic planning in hospital based services for the provision of treatment; lack of support for people on treatment; and GP attitudes to PWID.
There was support for a shared care approach to treatment and care; the need to enhance the role of community based agencies in the provision of information and support; and an expanded role for indigenous health services, sexual health clinics and drug & alcohol services in primary care.
Challenge 3. Getting the research right
There was support for a more balanced approach between clinical and social research; support for an improved surveillance system to guide strategic directions; and smaller population States called for support for local research initiatives.
Challenge 4. Extending Partnerships & Challenge 5. Clarifying structures, roles and responsibilities
These challenges relate to the structures and processes needed for establishing a coordinated response to hepatitis C in Australia and feedback was mainly concerned with funding issues and engaging with key stakeholders at all levels in a clearly defined partnership approach.
News in Brief
Breast-feeding is unlikely to transmit hepatitis C: German researchers Dr. S Polywka et al studied 73 HCV antibody positive women (60% HCV RNA positive) and their 76 children to determine the risk of HCV transmission via breast milk. Of the 76 breast milk samples tested, all were negative for HCV viremia. Only one child of the 76 tested positive for HCV RNA, but researchers noted this child was infected by one month of age, which suggested another mode of transmission. They concluded HCV positive women are unlikely to transmit HCV to their babies through breast-feeding and breastfeeding should be encouraged. Findings did not include women with acute infection after delivery, where other recommendations may be necessary. Clinical Infectious Diseases 1999 29:1327-1329
Anti-Oxidant Vitamins Delay Anaemia in Patients on Combination Therapy: Anaemia is a serious side effect of combination therapy. Ribavirin causes red blood cells to breakdown prematurely, resulting in 15% of all patients treated requiring dose reduction. Dr. E Piken, Director of Research at South Bay Gastroenterology in Torrance California conducted a small study involving 12 previously untreated patients and 14 relapse patients as controls. The 12 patients received 3 MIU of interferon three times a week plus 1,200mg of ribavirin daily. They were also given two common over the counter vitamins daily, 1,000mg of vitamin C and 800 IU of vitamin E. Dr. Piken reported patients receiving the anti-oxidant vitamins showed an initial benefit, but that benefit declined by the end of 3 months treatment. The anti-oxidants “appear to delay the onset and severity of the anaemia, and patients receiving anti-oxidants do not require [ribavirin] dose reductions, compared to 22% of the control group”. Larger studies are planned to research other more bio-available and possibly stronger anti-oxidants.
Adapted from Internet article: http://www.highilghts.wellweb.com/article10.html
Complementary Therapies
I have heard of another natural substance that might be useful to people with Hep C as well as people suffering with arthritis. It is shark cartilage. I was told of it by someone who used to suffer chronically from arthritis (before taking shark cartilage). Shark cartilage also has immune boosting properties.
I rang S.A. Shark Cartilage in Pt. Lincoln and requested some information on it and was quite impressed with the book they sent to me (excited is probably a more apt description). The book was written by Alex Duarte O.D., PhD. In it there are results of controlled, double blind tests on cancer, wounds that won’t heal, herpes, shingles, dry socket etc. with nearly a 100% success rate. Most of the people in the trials were bed ridden and had no hope of recovering but most patients did recover and left the hospital and now have another chance at life.
Although I haven’t yet tried shark cartilage I fully intend to. The anti-inflammatory plus the immune boosting properties of cartilage make it worth a try for people with Hep C especially as there are no side effects (apart from an ocean sort of taste).
How it works with arthritis is that it inhibits the growth of new blood vessels which grow through the cartilage thus destroying it. By taking cartilage that process is stopped and corrected, and new cartilage is formed, relieving pain and giving mobility.
I was going to include one of the many testimonials from the book but I decided that might be a bit presumptuous considering that I haven’t tried it myself as yet. So I will inform you in the next Newsletter of my progress and by the way, I was assured by S.A. Shark Cartilage that no sharks are targeted for their cartilage.
If you are interested in finding out more on shark cartilage I suggest that you get in contact with S.A. Shark Cartilage. Port Lincoln S.A. ph. (08) 8682 5695 or FAX (08) 8683 4190, Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it . I feel that you will find the book by Dr. Duarte as exciting as I did.
Fred
From Doug’s Desk
In the last few months I have accumulated a large variety of printed material on my desk - results of a telephone survey, a complaint letter to a hospital, abstracts and lecture notes from the Seventh National Symposium on Hepatitis - B and C, and notes from a National Satellite Broadcast on hepatitis C for health professionals. Other bits of news: Dr Jo Thomas from the Care and Prevention Project is moving on to greater things - she will be sadly missed. There was an International Hepatitis C conference in London a few weeks ago - no details yet.
As many of you will be aware the Council did a phone survey a few months ago as part of an information gathering exercise related to the First State and National Hepatitis C Strategies. The most important issues to be identified by the survey were the public perception of Hepatitis C, and discrimination. Since both of these are about stigma I think we can conveniently collapse response one and two into a single category and simply say that what our community is most concerned about are discrimination issues. It’s easy to forget the emotional impact of discrimination when it’s somebody else’s experience and not your own. My complacency in this regard was shattered last week when I went into hospital to have a liver biopsy.
The letter on my desk is addressed to the CEO of Flinders Medical Centre and outlines what happened to me when I recently attended that hospital to have my third biopsy. The letter describes how I underwent a biopsy with only a local anaesthetic, that I was not given nor was I offered any sedation prior to the procedure and that afterwards I was denied pain relief for three hours (I was finally given two panadeine forte). The letter also details how the person who performed the procedure had not written up my treatment sheet for analgesics and how they could not be located anywhere in the hospital ( they had either switched their pager off or ignored it), and finally when I asked the nurses to get someone else to write me up for pain relief I was told no one was available. My letter ended with the conclusion that this incident was clearly one of discrimination, or a serious lapse of duty of care, or both. I also drew attention to the fact that I have been discriminated against on two previous occasions by this hospital and I am determined not to let it happen again.
What I would do differently if I were having another biopsy. Firstly, I would phone the hospital and find out who was performing the procedure (most likely a registrar) and who the consultant is (if not my usual consultant). I would ask to have the procedure explained to me and insist on sedation prior to the procedure and I would ask to be written up for pain relieving medication on demand. If any of these requests were denied me I would then phone the consultant who referred me and ask them to advocate on my behalf. I am more than sure that this would work but if it didn’t, I would postpone the procedure and consider finding a more humane consultant.
How painful is a biopsy anyway? In this month’s “Hepatology” there is an article entitled “Pain Experienced During Percutaneous Liver Biopsy”. This pilot study showed that eighty percent (there were 30 people in the study) of people experienced only mild to moderate pain during liver biopsy, but 20 percent experienced severe pain; they were all hepatitis C patients. They conclude with the following: In the main body of the article it mentions the possible consequences of not providing the above - patients don’t come back.
About a week ago a group of people from the Council went to a Rural Health Education Foundation Satellite Broadcast on “Hepatitis C Treatments and Management”. It was chaired by Norman Swan from Radio National and the panel consisted of Dr Jane Baker GP, Gregory Dore Physician, Professor Geoffrey Farrell and Jennifer Holmes R N and Vice President of the NSW Hepatitis C Council. The chair put a series of questions to the panel covering most of the basics around hepatitis C. There were also two case studies presented and health professionals who were watching the programme were invited to say how they would treat these cases by phoning or faxing in their responses.
What was interesting for me was not so much what they put up on the overheads, most of which was very familiar and not worth reporting here, but some of the anecdotal stuff that came out, for example Geoffrey Farrell used the word “cure” (In the last issue I was lamenting about how we still have no cure) and when asked about this term he said that after following up people who had a positive response to interferon for seven years he felt confident enough to call it a cure as opposed to a sustained remission. He also stated that pegylated interferon was three times as effective as standard interferon (I would like to know why it is available in NSW but not in SA). He also mentioned that 60% of hepatitis C patients use Traditional Chinese Medicine - which I must admit I found startling.
The most encouraging message from both Geoff Farrell and Greg Dore was that when you kill the virus you also kill the symptoms - I have never heard this mentioned before although it makes intuitive sense when you consider that damage to the liver and presumably symptoms too are caused not by the virus itself but the immune mediated response. There were also some statistics on indigenous rates of infection cited by Greg Dore - infection rates for Aboriginal people are no different to those of the general community - he did not state indigenous rates for IDU. Our own panel of Hepatitis C experts gave the programme eight out of ten and Jennifer Holmes ten out of ten for courage and honesty with regard to her comments on prevailing societal attitudes to heroin use.
Every year in November there is a symposium on hepatitis C at St Vincents Hospital in Melbourne. Last year they included Hepatitis B, so the symposium now looks at both these illnesses. I couldn’t make it this year, but a number of people from the Council did and kindly provided me with a verbal account and gave me their lecture notes. I will skip papers on hepatitis B and those on topics previously reported on from the NZ conference.
Wayne Hall from the University of NSW presented a paper on trends in illicit drug use in Australia. It appears that the most widely injected drugs are amphetamines, cocaine and heroin, with evidence to support increased use of each of these drugs by IDU populations. Amphetamines were shown to have the highest ID use - higher than heroin. Amphetamine injectors also had the highest rates of co-use.
The content of Alex Wodak’s papers are almost always predictable, containing suggestions for reduction in IDU by a variety of methods ranging from needle exchange programmes to changing the route of administration. His papers may be predictable but are also extremely thought provoking and goal oriented, and “broken record” strategies may be appropriate in getting his message across. His statistics suggest that there has been a decline in the number of hepatitis C infections from IDU, due to a combination of harm reduction education programmes, needle exchange programmes, and improvements in methadone treatment. However, although there has been a drop in the number of IDUs becoming infected with hepatitis C, the IDU population is increasing at the rate of 7% per annum, or a doubling in number every 10 years and unless we can reduce the IDU population at the rate of 10% per annum we are simply not going to be able to control this epidemic. His final suggestion - encourage “chasing” or “snorting” as opposed to injecting.
Steven Locarnini from the Victorian Infectious Diseases Reference Laboratory in Melbourne gave a paper demonstrating the use of PCR genotyping in transmission studies. In the example he gave, a blood donor who had always tested negative unexpectedly tested positive. The blood donor was aware of two recent situations in which he could have been infected - one by an HCV antibody positive work colleague and secondly by a minor surgical procedure. Testing of all patients operated on the same day as well as all surgical staff showed that the patient operated on just prior to the blood donor was HCV positive. Having narrowed the source of transmission to two individuals a genotype analysis was performed and a comparison of the genetic sequences of each individual showed that the patient who had been operated on just prior to the blood donor was the most likely source of infection.
I understand that there were some interesting discussions at the break out sessions at the symposium on discrimination as well as strong differences of opinion regarding the use of non-invasive techniques in the assessment of liver damage - I am a bit lean on details.
I had intended to review an article on Interferon induced cognitive deficits and depression, however due to space limitations I shall include this in the next issue.
This last year has been a good one for the Hepatitis C Council in South Australia. We now have a strong committee, wonderful dedicated and caring staff, lots of dedicated volunteers, the embryo of a community, and a few visions and fantasies that seem almost achievable. For the first time in many years I feel more confident about our future. I wish you all a most enjoyable Christmas and a happy and hopefully healthy NEW YEAR.
Doug Mellors
n.b. I would like to thank Deborah for helping me on some of the research for this article and for all the help she has given me this year.
Indeterminate tests
Hep C Positive - Am I? Aren’t I? A story of someone eventually classified as “Indeterminate”
Mary discusses her story with Leslie Wightman of the Hepatitis C Council of SA Inc.
Mary: I decided to be tested for all STDs as I like to do this every couple of years. I also had a Hep C test. Two blood tests were taken and sent off to Clinpath. About a week later I got a phone call from the Doctor’s clinic asking me to come in. I sort of knew that something was wrong then because the first phone call was from my doctor and the second from his secretary asking me to come in. I rang to see the doctor and he was busy, so I saw another doctor at the same clinic. When I went to see this doctor he said that this appointment would probably be really quick, thinking that I’d had just a routine blood test. He opened my file and we both looked at the results.
I saw that the result was Hepatitis C positive and said, “I guess I’ve got it” and he said, “I guess you do”. He didn’t seem to know very much about Hepatitis C and he wasn’t prepared at all. I asked if it was incurable and he said that it was. I then asked if I would be able to have children because that was my first concern and he said that it was probably transmissible. I don’t think that he even had phone numbers for the Hepatitis C Council or anything. I took it reasonably calmly at first, but then when I got in the car and headed off to work, I just burst into tears thinking that I could die from this. I knew HIV was much more serious in terms of being more life threatening but I still felt like it was the same sort of thing. So, I went through a lot of grief that day. I’m a musician and I had to perform later on, I had to do all sorts of stuff that day. I managed.
Later in the day I rang to make an appointment with my usual doctor and I got in to see him. He was much better prepared with lots of information on Hep C and fortunately I have a friend who works at the AIDS Council who had given me numbers for the Hep C Council and other contacts. The biggest problem for me at first was that I was given very little information.
During that visit to my doctor he said that because I’d had two antibody tests that had tested Hep C positive I definitely had Hep C and there was no doubt about it. I did ask if I could be tested again but he said no that there was no point. Interestingly, I can now say that with Clinpath I had only tested just over the positive mark for antibodies but this information was not given to my doctor, just two positive test results.
I didn’t have anybody I felt I could really talk to about it. My parents, who I’m fairly close to and would tell anything to, were away for a holiday. I didn’t want to ring my mother because I knew she would freak out. I rang the Hepatitis C Council, they gave me information and I also went to the COPE bookshop which is where I got a copy of the ‘Hep C Handbook’ by Mathew Dolan, which was the most information I could get from anywhere at the time. I really recommend this book for anyone diagnosed with hepatitis C.
The prognosis that the doctor gave me was that I had a 20% chance of clearing the virus. I wanted to be one of the 20% and wanted to find out how I could change my lifestyle to try to clear the virus. My doctor didn’t seem to know anything. He had told me that he was available on the other end of the phone, but when I rang him and said look what do I change to make myself one of those 20%, he said there’s hardly any chance of that. It was very upsetting because he more or less said, “you’ve got it bad luck.” He said you get it through drug use and sexual transmission. I said I don’t use drugs and I’ve never injected so how did I get it. He repeated that people get it through drug use and sexual transmission. I said that I didn’t use drugs. He asked me all the normal questions about have you had a tattoo or shared a toothbrush and that sort of stuff. I said no to all of them. He told me that I must have caught it sexually.
I didn’t have it two years ago so I got in touch with my partners of the last two years and asked them to be tested. Of course some of them were very frightened. The person that I thought I might have caught it from got tested immediately and it wasn’t him at all. He was clear of everything. I told my doctor that my X-partners were all looking negative and he said if they all came through negative I could be re-tested. I had quite a wait for two partners to be tested, during which time I was still quite anxious and confused.
In this state of confusion I rang the Hep C Council and they gave me the name of the Surveillance Branch (I like to call them the “orange form people”), this is a branch of the Public and Environmental Health Service - Department of Human Services. The Surveillance Branch assists individuals in the identification of the possible sources of infection and they get you to answer a lot of questions on orange forms. When you are notified that you have Hep C you’ve got to sign a form so I rang the orange form people and they asked all the regular questions such as have you ever shared needles, had tattoos, had body piercing etc, to which I answered no to every one. I had also been negative on antigen and had absolutely no problem with my liver as indicated on my Liver Function Tests, every thing appeared to be normal. Then the orange form people asked me about the antigen on liver function and I said they were normal as well and they said there was probably a 50% chance that you don’t have Hep C.
I went to see my doctor at that stage and said the orange form people said that there was a 50% chance that I don’t have Hep C and as soon as he was given a percentage, (GPs seem to love statistics) and it being likely I didn’t have it, he let me have another test. This time he sent one to Clinpath and one to IMVS and the Clinpath turned out to be a positive result and IMVS was indeterminate. So, I still had no real answer except that there appeared to be a higher possibility that I didn’t have it. My doctor made an appointment for me at the hospital to see one of the specialists in Hep C and when I saw him he said you don’t have it. There are about three hundred people per year in South Australia alone that get tested as a continued indeterminate result and about one every year gets a false positive so there is a percentage of people that get false positives.
Q. Had you only ever had antibody tests? Had you ever had a PCR?
M: Yes, I did get a PCR and they were always negative but my doctor said that they don’t tell you for sure whether you’ve got it or not, they are unreliable because it depends on the amount that’s in your blood at the time. So because I got continued negative PCR my doctor wasn’t taking any notice of that. When I saw the specialist he basically said I didn’t have it, but I would probably test indeterminate for the rest of my life, because that’s what most people in my case do test. He said he’d only ever had one person in this situation who eventually tested positive. This person had shared needles and therefore had a significant risk factor.
Q: What did this all mean for you, looking back knowing how you responded initially with the grief and the stress and all those mixed emotions?
M: I experienced a huge amount of stress initially and I went through thinking I was really dirty, that I was less of a person than everybody else. Then I had to remember that everybody is the same regardless and that made me question my attitude towards people with hepatitis C or people with HIV. I’d always thought I wasn’t into discriminating but this experience bought all of these attitudes into question. Here I was discriminating heavily against myself for having hepatitis C. It was a huge relief I guess when I found out I probably didn’t have it but I still don’t know for certain that I don’t have it.
Q: You’ve obviously gone through the medical system, so in retrospect, what’s your reaction to the general level of knowledge held by GPs in regards to Hepatitis C?
M: They don’t know enough basically. My GP admitted he only had one other patient who had hepatitis C. I don’t know whether their workload is too high, but they are very numbers orientated. It appears that many of them are not really people orientated. When I said I wasn’t a drug user it was like he didn’t truly believe that I was telling the truth. He said that hepatitis is very prevalent in middle class society and people don’t talk about it. He was basically saying, “you have it.” I guess in a way he needed to do that because he didn’t want to give me any false hope that I didn’t have it.
I also found I got very angry with him for being almost not caring. He was trying to be, but really wasn’t and that is probably the same amongst a lot of GPs that don’t know enough. They seem quite cold and calculating about telling you what you’ve got. He wasn’t really apologetic when it turned out I didn’t have it. It turns out that a number of people are classified as ‘indeterminate’ (who have a high level of antibody to Hep C, but they don’t have it) but instead probably have had glandular fever or something similar in the past. It seems this may create some sort of reaction with the Hep C antibody test but there is not enough being done about the test procedure. They are more interested in the cure, which is fair enough, but they are not doing anything to change the test procedure and they don’t appreciate the impact that it has on people. The one per year who tests positive will continually have to declare this on any life insurance statement or whatever, if they are asked “Have you ever tested positive for hepatitis C”? You have to really say yes, but please call my GP (or all this sort of stuff) as I don’t actually have it.
Q: What does an “indeterminate” have to do?
M: There appears to be nothing you can do, which is very dissempowering. I just have to wait six months to be tested again to see if I am clear of it.
Q: What sort of legacy has this left on your life?
M: Yes, it really made me concerned about treating myself well and doing the right thing by my body because all of a sudden I saw “death” in a way, and I changed a lot of habits. I quit smoking and went on a liver cleansing diet and got really healthy, really quickly. In my area of work I have a high stress load, I changed all of that to make sure that I had time to myself to relax and rest. Gradually though, I have gone back to some of these old habits and I am quite disappointed in myself because I am drinking coffee, smoking and doing all those things I shouldn’t be doing. So, long term it didn’t end up affecting my values towards myself, which is a shame because I think everybody should treat their bodies a lot better than we do. I truly believe I am less discriminatory. I didn’t think I was previously, but as it turned out, I was to a certain degree. It’s really frightening because now I can’t say for sure I don’t discriminate, but I am pretty sure I don’t.
Inderterminate Antibody Tests by Dr Robina Creaser
Indeterminate – means that the laboratory was unable to determine if your test for Hepatitis C was positive or not.
All positive tests are routinely retested with a different kit to confirm that the result is really positive. Sometimes the second test does not confirm the positive result – this is an indeterminate result. Quite often the original test was only ‘weakly positive’ ie just positive (near the cut off point between +’ve & -‘ve), so raising doubts about its reliability. Remember the Hep C antibody test is just a screening test – meant to be used for screening populations, and with a high probability (99.5%) that a positive result reflects the presence of the Hep C antibody. Such `screen positives` always need to be looked at in the context of the whole patient and their individual situation and appropriate supplemental or confirmatory testing done in each case.
Causes of Indeterminate Antibody Result – There are 3 main causes: False Positive; Sero-converting to positive; Sero-converting to negative.
False Positive: this is by far the most common reason for an indeterminate result – particularly in people who have no risk factors for Hepatitis C ie no history of blood transfusion, IV drug use or tattoos etc. This person does not have the Hep C antibody at all, but one or some of their other antibodies are cross reacting with the Hep C kit. People with auto-immune diseases such as SLE, rheumatoid arthritis and auto-immune hepatitis for example may well react positively if tested for Hep C. In other people it simply happens for no apparent reason.
This group need supplemental testing as follows:
Liver Function Tests (LFTs) these should be normal unless there is another cause of liver disease.
PCR (Polymerase Chain Reaction) * this should be negative ie no virus detectable in the blood. This test can be repeated at yearly intervals as long as you are `indeterminate`.
Repeat Hep C antibody test at 3-6 months. It may remain indeterminate or may be negative or even positive . the important thing here is to know that you do not have the virus.
Sero-converting to Positive: This means that the person is in the process of becoming Hep C positive, but they have not quite got there yet. This person does have Hep C, they are infected and infectious, and will usually become Hep C antibody positive over the next few weeks to months. These people will usually have a risk factor for Hep C such as IV use or transfusion. This group need supplemental testing as follows:
LFTs – there will usually be abnormalities in LFTs – such as elevation of ALT.
Repeat antibody test will usually become positive within 3 months or so.
PCR* – the PCR test will be positive confirming the presence of Hep C virus in the blood.
Sero-converting to Negative: This is a small but hopefully growing number of people who have been infected with Hep C but have cleared the virus. They may have cleared it themselves during the initial infection or later as a result of treatment. It may take up to 10 years for the antibody to disappear or it may never go. This group need supplemental testing as follows:
PCR test will be negative as they no longer carry the virus. PCR should be repeated at yearly intervals as long as the antibody test is `indeterminate`.
LFTs will be normal in most cases. Only those with very advanced disease before treatment should have ongoing abnormalities of LFTs.
Hep C Antibody test can be repeated at yearly intervals and should , perhaps, eventually become negative.
*Hep C- PCR (polymerase chain reaction): This test is now available under Medicare if you have an indeterminate antibody test result. The test costs the Government $90.00. A Hepatitis C - P.C.R should not be done on a person who has not had an antibody test. The PCR test looks for actual virus in the serum (the clear part of your blood). This is in contrast to the Hep C antibody test which is more indirect and only infers the presence of the virus. Thus, the virus gets into your body, stimulating your immune system to make an antibody and from the presence of the antibody we assume the presence of the virus. In most cases the virus will indeed be present, but as outlined above, in certain cases the virus either was never present, or has been cleared. The PCR test is used to clarify the situation.
PCR Positive – if the PCR is positive then this confirms the presence of the virus and you are infected and infectious. A positive PCR is extremely reliable.
PCR Negative – if the PCR is negative then Hep C virus was not detected in your serum. This probably means that you do not carry the virus, particularly if your antibody is indeterminate and LFTs are normal, however, it is possible that if the amount of virus in your blood is very small (very low titre) then it is possible that there was too little virus present to detect. The PCR should be repeated at yearly intervals until the situation is clarified.
Thanks to Dr Geoff Higgins-Virologist I.M.V.S for his helpful comments.
Aushep 8 Diary
Well I’m still here having survived the first 8 weeks of the treatment. Over that time I have experienced every possible side effect I could have, well almost every one, I haven’t lost my hair. I’ve felt tired and sick, I’ve ached in my body and my head, my gums have been sore and bleeding, my body is covered in a mild spotty rash, I’ve had difficulty sleeping, experienced mental confusion and I’ve been depressed.
With all that you are probably wondering how I managed to hang in there. At times it wasn’t easy but I had a support system worked out. Firstly there was family and friends, who were really great when it came to giving me emotional support. When you are feeling like you are about to burst into tears all the time, a hug can be the best medicine. They also fed me when I was feeling too sick to feed myself. This was really important to me as I dropped a kilo in the first week of treatment, which is a lot when you’re only 57 kilos to start with.
Further support has come through the Hep C Council where I have been going in as a volunteer about once a week. The benefit of this has been the interaction with people who can identify with what I am going through. It’s also provided me with a bouncing board for the symptoms I have experienced, as there are a number of volunteers who have had previous interferon treatment. The Council has been the only place where I have been able to access support in the form of information sharing and I have found this to be of extreme value.
Finally, I have continued to work while on the treatment. This has been possible as I work part time hours (half of a full time load) and have a very supportive work environment. My co-workers knowing I was undergoing treatment has meant that I could freely discuss how I was feeling with them and they were understanding and supportive in return. One co-worker was even able to give me some good tips about overcoming the emotional response to self-injecting.
Of the physical symptoms, the most important thing for me has been sleep. If I don’t get enough sleep then all the other side effects are much worse, especially the depression. This wasn’t easy and I think I spent a small fortune on an assortment of herbal remedies for sleeplessness, often with little effect. Finally I discovered that the more treatments I took the better the result, so I was drinking chamomile tea, taking homeopathic sleep remedies and having a toke (yes, of the green stuff) in order to get 5 hours of continuous sleep.
Initially the physical side effects tended to occur during the night, after I’d had the interferon, and apart from feeling tired I was not too bad during the day. Over time the intensity of the effects decreased, however they tended to continue longer till eventually I was experiencing aches and pains virtually all the time. This was also teamed with feelings of depression and mental confusion, which tended to make me quite frustrated, I just didn’t feel like me anymore at all. At this time I started thinking that I just couldn’t take much more of this.
Just when I was at the point of saying I wanted out, the aches and pains just went away and I had a week of feeling quite good physically. This also had a positive effect on the mental side effects and I started to feel a lot better about myself. I still didn’t feel 100% but it made a big difference not being in pain. The mental confusion and depression didn’t go away either, I just felt better equipped to deal with them and able to divorce myself from the emotions, something that is not easy to do when you are also in physical pain.
The good side of the treatment, and there is a good side, has been the effect on my liver functions. The day I started the trial my ALTs were over 150, after the first week they dropped down to 27 and on my last test they were sitting quite comfortably at 9. With my liver working a bit better I have been able to eat some foods that had previously made me ill. This has been a great help when I was feeling too sick and tired to prepare food. I was able to grab the odd bag of hot chips or a vegie burger from the corner store and not suffer for it the next day.
So now I am in week 9 of the treatment and my dose of interferon has been reduced from 5 MIU daily to 3MIU three times a week. I can still feel the effects of the interferon but I think it’s getting better. As I’ve only just dropped back it’s hard to tell just yet. I guess that means you’re going to have to wait till diary number three to find out about that, so until the next instalment, looking forward to good health
Heidi
Mail Bag
Dear All,
Well, here I am staying in Central Australia. I came for what I thought would be a couple of week’s holiday with my brother and sister-in-law but have fallen in rapture with the heat, the dust, the deep red ochre ranges which are transformed into vibrant red-orange beacons when the sun’s fingers dip in the sky and touch their rock-pitted faces, the 360 degree horizons, the abundance of indigenous flora and fauna and the ever-changing outback skies. So, having checked that I can maintain my diet and can access the naturopathic and other health supports I need, I’ve decided to move here to Alice Springs for “however long”.
I’ve had Hep C probably for 15 years and didn’t think too much about it until it became symptomatic last December. This was when I was in the midst of reducing my Methadone dose to a level where I could be accepted into detox at Warrinilla to cast off my “liquid handcuffs”. I was only on the Program for about 2.5 years, having used heroin enough to develop a mild habit back in the 80’s, but then returning to use again with a vengeance about 5 years ago. I was proud of my achievement in detoxing off “smack” and then starting the long process of withdrawing from ‘done: it took me 6 months to reduce from 85 to 11 mls, followed by a 3 week stay in detox and a further 2 months of uncomfortable residual symptoms. It was therefore hard to have to come to terms with the effects of Hep C in the middle of all this. For some time it was also unclear what was Hep C related and what was detox, since some of the symptoms are similar.
7 months on from detox, largely doing “all the right things” with regard to diet, drug intake and lifestyle choices, and with persistently elevated ALTs and ASTs (currently about 375 & 185 respectively), it’s become obvious that it’s HCV. At first I was incredibly angry, thinking, “why have I bothered? I feel much worse now than I did when I was using”. But, when I was using, I was working like one possessed, making lots of money and doing the usual “scamming” that accompanies an insatiable habit. I used up all my resources, selling most of the possessions I’d accumulated over 15 years solid work, was now definitely unfit for work and unprepared to return to the lifestyle I’d need to adopt to maintain a habit. It seemed I was caught between a rock and a hard place: I’d had a gut-full of my previous life but my new one didn’t seem much better.
Fortunately, I still have some superb friends and found excellent medical support, (Doctor, Naturopath, and Chiropractor). With their help, I am gradually coming to terms with my past, present and foreseeable future. Going to Support Groups and doing a little volunteer work with the Hep C Council has also helped heaps, providing me with solid, accurate information and friendly, genuine support.
I’ve decided, at least for now, to persist with natural remedies rather than going on the AUSHEP 8 trial and am coming to realise that the self discipline required to sustain a healthy lifestyle is excellent grounding for me in all areas of my life. I used to avoid concepts like “self discipline”, seeing them more as “self denial” or “punishment”. However, my Chiropractor offered me a useful alternative definition of it being “doing that which is appropriate for the self”. I’m learning that I do feel better when I take my supplements and stick with my diet and that simple everyday tasks like making my bed every day and paying off huge debts a little at a time are probably just as important as all of the training programs and research reports and other stuff I accomplished when I was working: that if I take care of the little things in life, the big things take care of themselves. The Buddha is quoted as saying “The 10,000 step journey begins with one step” and I feel as if I’m starting to “walk my talk” rather than “talk my walk”. I pass no judgement on those who use drugs: only they can tell what is appropriate for them & I know I couldn’t stop until I was ready to and genuinely wanted to. There’s also a world of difference between “recreational use” and having “a habit”.
On especially difficult days, I remind myself that 18 months ago I had to have a “fix” or a “dose” or both, every single day in order to simply function, and at least I can do that now without either.
Being off the ‘done program has also enabled me to travel here to this sun-lit land that sings solace to my weary spirit: I couldn’t have holidayed in the NT before because there is no ‘done program here. After months of living life as a virtual “recluse”, coming to terms with a heap of stuff about myself and my lifestyle choices, and establishing radically different routines to those I adopted even when not ‘using’ (eg, I’ve always tended to be a “workaholic” and I’ve usually been in a relationship), I’m still figuring out what sort of a phoenix I am, arising from the ashes of my past. Taking space in Alice Springs has been illuminating. It’s given me a break and a reward for all the hard, largely “internal” work I’ve been doing yet convinced me of the need to remain vigilant with my dietary and other routines. I also know that I need to continue learning to live with my dis-ease, including becoming more comfortable socialising with others, which I still find exceptionally difficult. Like, I’m still processing intense experiences and it’s a bit difficult to know what to say to people when I look well but am feeling like shit, when I’ve invested lots of my self-identity in work and am now unable to do so, and when I’ve lost the capacity for making “small talk” at social occasions. How can I explain what my life is and who I am? When I’m not only discovering what and who I am and coming to terms with where I’ve been. I suspect this is the same for anyone who has experienced profound grief and loss and recall feeling similarly when I had a baby adopted out 18 years ago. Then I salved my pain with speed and alcohol: now I need to find the answers from within.
Here in Alice Springs, I can adopt a leisurely pace in a leisurely outback town, gradually continuing to re-integrate and heal, assured of support from my brother and sister-in-law and, hopefully, in time feeling more confident in reaching out to others and developing new friendships. I look forward to a time in which I am living beside my HCV rather than with it looming “in my face”. I also look forward to continuing to receive Newsletters from the Hepatitis C Council & intend making regular contributions to it, including providing updates on what is available in Central Australia for those affected by HCV…. just in case anyone else who loves this land as much as I do is contemplating coming for a visit or even to stay, as I am “for however long”.
Best of good luck and good management to all others who have embarked upon a similar journey as mine. I’d love to hear how you deal with some of the issues I’ve raised in this letter, especially about living with symptoms like fatigue, making new friends and coping with not being able to work or do other things most people take for granted.
Cheers! Liz
Hep C and me.
My story is probably similar to many others, but I thought I should write in so that more people become aware of the far-reaching ramifications of this insidious disease.
I was a happy, healthy, working wife and mother with everything to live for, but after the birth of my baby I became more and more fatigued. This continual tiredness put unbearable pressure on my marriage and 2 days after my husband left me I was diagnosed with Hep C. I was relieved in a way, because this was an explanation for the fatigue and now I could do something about it. I cut down my alcohol intake, my hours at work and tried to eat a healthy diet.
My enzymes continued to rise; I couldn’t keep up with the housework or my son and the fatigue worsened. I lost heaps of weight and my friends knew I wasn’t well. My personality had changed from happy go lucky to tired and irritable. Eventually I had to tell my worried friends, work mates and parents what was wrong with me. I had already tasted discrimination from the specialist, but I had no idea my parents, some of my friends and work mates would also discriminate. I was so upset, I had nowhere to turn and my self-esteem plummeted, but I convinced myself that these people were ignorant, and needed education. How could these people who knew me so well, assume I was depressed or lazy or that Hep was an illness that goes away?
After 4 years of struggling along I made a decision that would save my life. 2 Australian trials of Interferon had started, with promising results. I weighed up the pros and cons of interferon and thought of remission, and the chance the virus would be cleared was good enough reason to try it. My son had started school, so I could rest in the day. Unfortunately the treatment activated “an underlying depression” and I found myself in Glenside with psychosis. My five year old son didn’t understand my illness and why I couldn’t run and play with him. I’ll never forget his confused sad little face the day I was carted away in the ambulance. He too was now affected by HCV.
The interferon did help me physically. 5 years post-treatment I have a good appetite and no longer look tired and emaciated. I don’t have chronic headaches and nausea anymore. I have a pretty good quality of life now and many other people have since been diagnosed, so I no longer feel alone and alien. My enzymes have remained below 100 since Interferon and I appreciate every day of my “new life”, despite the poverty.
Some of my good friends have been very supportive, but I’m disappointed with the GP and the liver specialist. They now discriminate because of my mental illness! It may be easier to presume depression than assess physical symptoms. So I mentally sacked both of them-and felt good about it. My new GP is OK, so there is light at the end of the tunnel. My son, who went to live with his dad last year, is the highlight of my life and now I have the chance to watch him grow up, thanks to Interferon and supportive friends.
Dotti
