Contents
- National Strategy
- Review of Australia’s response
- Aushep 8 Trial
- Dental Care
- News in Brief
- Irish I. G. Transmission
- From Doug’s Desk
- Complementary Therapies
- Tribute to Vern
- Peer Support
- Positive Speakers
- Mail Bag
National Strategy
WE WANT YOU to have your say!
The reality of the impact of Hepatitis C in Australia is now gaining greater recognition by political and bureaucratic processes. This was highlighted in the recent Federal budget with an additional $12.4 million being provided over the next 4 years to improve education, prevention and health maintenance for those currently infected and those at risk of becoming infected. These monies also include provision for research, and the development of a national strategy that will guide Australia’s future response to HCV.
The National Hepatitis C Strategy is expected to be launched by December 1999. During this next 6 months, South Australia is also developing a State Hepatitis C Strategy. It is important for people from the hepatitis C community to participate in the development of these Hep C strategies, as an ‘expert’ voice, expressing the experience of living with hepatitis C.
The consultation processes around the development of both these strategies is a small window of opportunity for people with hepatitis C to influence Australia’s response to HCV. If you are not happy about the response to date
NOW is the time to get involved !!! We are particularly interested in hearing from people living in rural or remote South Australia.
Review of Australia’s response
The Hepatitis C: A Review of Australia’s Response document is wide ranging in its investigation of Australia’s response to hepatitis C and has made many recommendations to improve the response in the future. The review framework adopted in the report proposes five challenges that encompass the many elements of hepatitis C that need to be confronted to bring about an effective response. These are:
1. Reducing the number of new hepatitis C infections: This challenge primarily relates to education & harm minimisation strategies among injecting drug users and people in prisons.
2. Improving treatment and care for people with hepatitis C: Includes recommendations around testing; development of primary health care models to ensure optimal access to counselling, testing and management for people living with hepatitis C; increasing capacity of liver clinics; GP education; provision of information & support.
3. ‘Getting the research right’: This challenge involves establishing research priorities; determining the roles of national research centres; recognition of the importance of social research; provision of adequate surveillance mechanisms; and connecting social research with education & prevention strategies.
4. Extending partnerships: Recommends a partnership approach at all levels, with priority given to supporting affected communities’ participation; establishing structures & processes at State level to maximise stakeholders’ contributions to policy & decision making; resourcing adequately user groups and Hep C Councils in all States, Territories; developing State Hep C strategies; and building an integrated approach to hepatitis C.
5. Clarifying structures, roles and responsibilities: This challenge relates to coordinating mechanisms at the national and State level involved in all aspects of hepatitis C.
The central recommendation of the review is the urgent development of a National Strategy for coordinated action that will effectively respond to the challenges of hepatitis C.
HCCSA still has copies of this review. If you would like to read the whole document, please contact the Council on 8362 8443 to get a copy.
Aushep 8 Trial
Aushep 8 is an Australian multicentre trial on the treatment of chronic hepatitis C with interferon alfa 2b plus ribavirin. The study will assess the effectiveness and saftey of daily dosing vs. interferon 3 times a week and the role of genotype on the duration of therapy in previously untreated patients.
All patients must be treatment naïve (not previously treated with interferon), and fulfil the criteria of the section 100 highly specialised drugs program.
Criteria includes:
age 18-65 years.
repeatedly positive antibody test.
elevated ALTs 3 times over a six month period.
chronic hepatitis proven by liver biopsy in the previous 24 months (except patients with clotting disorders).
no evidence of cirrhosis or other liver diseases.
not having hepatitis B or HIV coinfection.
ability and willingness to attend for regular treatment and follow up appointments.
not being pregnant or breastfeeding.
effective contraception must be used by men and women during and for 6 months following treatment.
no history of significant psychiatric disorders.
no history of heart disease.
consuming no more than 7 standard drinks a week.
Further inclusion and exclusion criteria are in place, your specialist can advise.
All patients will be genotyped and assigned to one of two groups; genotypes 1 or 4, genotypes 2 or 3. From these two groups patients are randomised (having equal chance of being assigned) to one of the following treatment regimes:
Genotype 1 or 4
Group 1: Ribavirin daily for 52 weeks, plus 5MU Interferon daily for 8 weeks, then 3MU Interferon 3 times a week for 44 weeks.
Group 2: Ribavirin daily for 52 weeks, plus 3MU Interferon 3 times a week for 52 weeks.
Genotype 2 or 3
Group 1: Ribavirin daily for 24 weeks, plus 3MU Interferon daily for 4 weeks, then 3MU Interferon 3 times a week for 20 weeks.
Group 2: Ribavirin daily for 24 weeks, plus 3MU Interferon 3 times a week for 24 weeks.
Treatment centres in South Australia.
*Royal Adelaide Hospital (RAH)
*Flinders Medical Centre.
Dental Care
The Adelaide Dental Hospital has been funded to provide a pilot project that looks into the dental needs of people with hepatitis C. If you have Hep C and have a Health Care Card, you are able to access FREE dental care within a short period of time. Anyone in pain will be seen within a few days, others in a couple of weeks.
Data on the condition of your mouth and teeth, as well as the acidity and amount of saliva before and after chewing will be collected. All data will be analysed in an anonymous way, your name or any other identifying information will not be included. Participation in this study will not only benefit you, but the results of the project will help in the future planning of dental services for people with Hep C.
A referral letter is needed for entry to the project. This can be obtained from your local GP, dentist or phone the Hepatitis C Council on 83628443 and we can organize one for you.
News in Brief
Protease Inhibitors in HCV/HIV Coinfection: French researchers I. Mendel, L. Froment and C. Buffet-Januresse recently researched the effects of protease inhibitors (P I) in patients who are currently infected with both HCV and HIV viruses. Although the study showed a significant drop in HIV viral load over the study period, there appeared to be no change in HCV viral load whatever the PI used. Further statistical analysis showed HIV protease inhibitors have no activity against HCV replication even with long treatment in coinfected patients.
from Hepatitis Alert Winter 1999
Rimantadine Unsuccessful: A pilot study of rimantadine for patients with chronic hepatitis C who were unresponsive to interferon therapy was reported in the Am.J. Gastroentrol. April 99. The study involved 17 patients receiving rimantadine for 6 months in an open label trial. Mean ALT levels did not change significantly during treatment, and all patients remained HCV RNA positive. 29% of patients developed neurologic symptoms (headaches, nervousness and dizziness) requiring dose reduction in a total of 12%. Results of this study suggest rimantadine has no significant effect on antiviral activity against hepatitis C.
Musculoskeletal Pain: A recent study by US. Researchers Barkhuizen A. et al published in the Am. J. Gastroenterol. May 99 has found fatigue and musculoskeletal pain to be more frequently associated with HCV infection compared to other liver diseases. The symptoms reported were unrelated to ALT levels, severity of liver disease, route of infection, or interferon therapy.
D.I.Y. Hep C Test Kit: The U.S. Food and Drug Administration (F.D.A.) has approved the first over-the-counter HCV antibody test. The test involves collecting a sample of blood and mailing it to a designated laboratory. Using a personal identification number results are obtained anonymously by phone. Called Hepatitis C Check, the kit contains instructions for use, a personal I.D. number, a lancet for obtaining a sample of blood, filter paper for collecting blood and a mailer. As part of the test system, the makers provide a telemedicine service which offers information, counselling and referral to a doctor if required. F.D.A. approval was based on the results of studies to determine safety and effectiveness of the kit conducted by the manufacturer.
Adapted from F.D.A. Talk Paper April 29 1999
New Italian Transplant Technique [A new splitting technique for liver grafts. Colledan M. et al Lancet 22 May 1999. 353;1763 ]
The in-situ split liver technique has allowed a donated liver to be divided in two parts for transplantation. The two grafts however are of different size and the smaller (usually weighing less than 300g) has only been suitable for transplanting in young children. An alternative technique that provides grafts of more equal proportions has been successfully used in two patients of adult size. The right lobe weighing 685g was transplanted in a 53 yr-old man, 178cm tall, weighing 79kg with alcoholic cirrhosis. The left lobe 480g in weight was transplanted in a 13 yr-old girl, 155cm tall weighing 48kg with autoimmune cirrhosis and HCV. Both grafts functioned well and patients were discharged on the 15th and 24th day respectively, with continued normal liver function at 5 months. This technique has the potential to double the pool of liver grafts available for adult transplantation.
(There are many risks involved with transplantation and not all patients are suitable candidates. New techniques practiced overseas may not necessarily be used in Australia in the future)
Irish I. G. Transmission
Irish women 17 years on
[Clinical outcomes after hepatitis C infection from contaminated anti-D immune globulin. Irish Hepatology Research Group. Kenny-Walsh E. N. Engl. J. Med. 1999 April 22;340(16):1228-33]
In February 1994 it was found that a group of Irish women had been infected with hepatitis C after being given contaminated anti-D immune globulin (IG) between 1977 and 1978 that was infected through a single donor. This sparked a national screening look back for all women who had been given IG since its introduction in the early 70’s to 1994.
Reseachers have screened 62,667 women (an estimated 94% of the women involved). 704 (1.1%) were found to be HCV anti body positive. Of the antibody positive women, only 390 were HCV RNA positive by PCR. 376 of the 390 RNA positive women accepted referrals and were extensively evaluated for liver disease.
Findings:
Mean age 45 (+/-6) years range 34 to 60 at time of screening.
Infected for about 17 years.
Information on genotype was available in 360 women, all were type 1 or 1b.
17 women (5%) reported drinking excessive amounts of alcohol, defined as more than 14 standard drinks per week. Ultrasonography was performed on 174 women, 33 (19%) were found to have gallstones.
81% reported one or more symptoms, most commonly: 66% fatigue; 38% arthralgia or myalgia (muscle or joint aches); 16% anxiety or depression; 6% right upper quadrant pain; 5% rashes
Although a high percentage of women reported symptoms this may have been influenced by their awareness of the consequences of infection and the high public controversy that followed the disclosure of the outbreak. In addition the researchers did not use matched controls, so its not possible to estimate how much these symptoms related to their HCV infection.
ALT levels were raised in 55% of the women - 47% slightly elevated; 8% highly elevated
Liver biopsies performed on 363 of the women showed inflammation in 98% and was graded as: 41% minimal inflammation; 52% moderate; 4% moderate/severe
Fibrosis was found in 51% and was graded as: 49% stage 0 ~ no fibrosis; 34% stage 1 ~ periportal or portal fibrosis; 10% stage 2 ~ portal–portal bridging; 5% stage 3 ~ portal–central bridging; 2% stage 4 ~ probable or definite cirrhosis
In conclusion its important to note that after 17 years of infection with genotype 1 most of the women had only slight or moderate inflammation and only 2% had evidence of cirrhosis.
From Doug’s Desk
Beginning with this edition of the Hep. C Community News I will be regularly writing an article in this column. The purpose of the article will be to keep people informed of what is going on locally and globally in the world of hepatitis C. The information will come from a wide range of sources eg. medline searches, net searches, Australian and overseas newsletters, communications with council members, community members and personal anecdotes. I will be assisted in the searches by Deborah from the Council. There will be an opportunity for people to write in requesting information or providing it.
In the last 12 months or so there has been a marked change in the focus of many research papers. We are now getting research that looks at areas that have previously been ignored or barely touched upon eg. symptoms and quality of life - I will touch on these later. The mainstream research is also becoming more sophisticated eg. we are now getting outcome studies on Interferon that are fine tuned enough in their design that they look at multiple patient characteristics. To give an example, let’s say that you are male, have genotype 1, a high viral load and had previously been on interferon but did not respond or responded and relapsed. It is now possible to find studies that have retreated male non-responders to Interferon treatment who have genotype 1, and who have a high viral load. By looking at the sustained response rate for people who have similar characteristics to yourself (that’s assuming you know what they are) you are potentially in a much better position to make decisions about your treatment. These studies have evolved due to a better understanding of how each of these characteristics influence treatment outcomes.
Quality of life studies are important because they look at the way the virus effects the whole of our lives - not just our bodies. Moreover they provide evidence for the more accurate experience of those who have symptoms ie that although many of us who have symptoms appear outwardly well - this is in fact not the case. These studies are crucial and long overdue as any study which validates our own subjective experiences of our illness should in theory increase our psychological well being - not being believed can have a devastating impact on one’s confidence. Quality of life studies also lend weight to claims for sickness benefits and pensions.
We have also had lots more studies looking at the natural history of hepatitis C (What the virus does and how it affects the person from point of infection onwards throughout their life). These studies are also of crucial importance as they will help us figure out which people are likely to develop serious symptoms and when to consider treatment. An analysis of these studies was the central focus of the keynote speaker Anna Lok at last years Symposium in Melbourne. In the last 12 months it has become clear that Hepatitis C is a progressive fibrotic disease (the liver slowly develops scarring - which unless arrested eventually results in cirrhosis). Most readers would be familiar with the “If one hundred people get hepatitis C..............” diagram. If you didn’t clear the virus and don’t have cirrhosis or hepatocellular carcinoma you probably wondered what your status was as one of the 60%. The evidence from these studies suggests that most if not all of these 60 people will develop cirrhosis eventually but the rate of fibrosing is not the same in each individual i.e. some people have a slow rate, some a moderate rate and some a fast rate - these studies have begun to look at some of the reasons for the difference in the rate eg. gender, age, age at infection and alcohol consumption. About one third of all people are likely to develop fibrosis in less than 20 years, another third around 30 years and the final third never develop cirrhosis or not for at least 50 years.
There have also been a number of advances in treatment over the last year. Combination treatment (Interferon + Ribavirin) was approved by the FDA in the US as a standard treatment after many trials. At present two new types of interferon are being trialed, the first is called consensus interferon - this is a genetically modified interferon ie. they took all the bits that work best from different kinds of natural interferon’s and put them together in a single drug to make consensus interferon. The second is called pegylated interferon and is simply the old alpha interferon but which is now in a depot or slow release form - the efficacy of the drug is hypothesised to increase due to smoother and more consistent dosing. Preliminary results have been very good for both of these with claims of improved sustained response rates over the regular alpha interferon’s and combination treatment. We can expect trials of pegylated interferon in Australia in about 18 months to two years and for consensus interferon - we will just have to wait and see. I am not sure whether it is possible to develop a single drug with both these features ie. a depot form of consensus interferon, but this would seem a logical development.
Some weeks ago I went to see my new GP, one of two doctors involved in the Care and Prevention Project which is targeted at people who have HIV/AIDS, Hepatitis C or B and people who are at high risk of being infected by those viruses. The program is coordinated by the Adelaide Central and Eastern Division of General Practice (an organisation that looks after the concerns of GPs and their patients) and funded by Commonwealth, State and drug company funding. I had been looking for another GP since my previous one had become ill and stopped practicing, but I was put off by the fact that the project does not bulk bill - as much for personal philosophical considerations as financial ones. However, leaving the politics of welfare aside I went along and was given a fairly rigorous assessment not just medical but psychosocial as well, this was followed by a battery of questionnaires that looked at depression, quality of life, sexual practices etc. On my third visit I was seen by a surgeon who examined me and booked me in for a number of medical procedures - non-hepatitis C related - which I had neglected for many years, but which are important for my general health. In summary this is a one-stop-shop, an idea that has been experimented with in Canada and proven to be of great success - especially for people who live in the rural areas.
I must say it was a breath of fresh air walking into the place it was so nice I wondered if they had read my “Aesthetics of the Waiting Room” - I’m only kidding - no television, no piped music, elegant fittings and two aquariums. The staff all appeared competent, highly skilled with a positive attitude and most importantly a good sense of humour. If we want a model of excellent care this is pretty close to it.
A few weeks ago I listened to someone recount what sounded like some very prejudiced views on Hepatitis C from their GP. I am sure many people have encountered this in the past, however there is no reason to put up with it. The Council keeps a list of doctors who are interested in treating people with Hepatitis C, but is constrained from recommending any specific doctor - to avoid possible conflict of interest. However, volunteers and people at support groups are under no such constraints and if you are unhappy with your doctor I recommend you discuss it with someone at a volunteer or support group.
At present there are more than 8,500 people in South Australia infected with Hepatitis C. Most of these people reside in Adelaide. The last time I enquired of the Council how many individuals (as opposed to organizations) we had on our register there were about 60 - that was about 2 years ago. I found it puzzling then that so few people were interested in getting actively involved in doing something about their illness and that puzzling feeling has not gone away, it simply increases each year. Of all the illnesses it’s possible to contract, Hepatitis C would have to be the most stigmatised. I could overwhelm you with statistics to validate my argument but I am sure that I don’t have to. What it amounts to is that we get less money, poorer treatment, fewer services and very little public sympathy compared to people with other illnesses. The only advantage we have is in our numbers. The drug companies are very aware of our numbers and we represent a very lucrative market for them. However, if we don’t make any effort to have a say in the future direction of policy, treatment and care of people with hepatitis C, others will and they may not always have our best interests at heart. So, if you are out there and have been sitting on the fence for years, have courage and JUMP - in our direction.
In a couple of months time the 2nd Australasian Conference on Hepatitis C will be held in Christchurch New Zealand. We will be providing feed back from this conference in our next newsletter. If you have any questions, don’t be shy, write to us. I’m trying to get a collection of funny stories about hepatitis C - if you have one send it in.
Doug Mellors.
Complementary Therapies
Complementary therapies have been used to treat Hepatitis C and it’s possible symptoms but, to date, there’ve been few research trials in Australia to check their effectiveness. Certainly though, many people report positive benefits.
Natural therapists using acupuncture, homeopathy, herbs or other methods, aim to improve the overall health of their patients. Good results have been reported by some people using complementary therapies but others have found no observable benefits – and, as with any treatment, it is important to remember that wrongly prescribed medicines can be harmful.
Some people choose complementary therapies as a first or a last resort. Others may not use them at all. Some may use them in conjunction with pharmaceutical drug treatments. Whichever way you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to:
Is the treatment dangerous if you get the prescription wrong?
How have complementary or natural therapies helped people with hepatitis C?
What are the side-effects?
Is the practitioner a member of a recognised natural therapy organisation?
How much experience have they had of working with people with hepatitis C?
How have they measured the health outcomes of their therapy?
How do they aim to help you?
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you’re not satisfied, shop around until you feel comfortable with your practitioner.
Costs
You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It pays to ask your natural therapist about money before you visit them. Many will come to arrangements about payment – perhaps a discounted fee?
Choosing a practitioner
If you decide to use complementary therapies, it’s vital that you see a practitioner who is properly qualified, knowledgeable and well experienced in working with people who have hepatitis C. It’s also advisable to continue seeing your regular doctor and/or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It’s best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you may want to consider changing your natural therapist.
Researched?
In regard to Hepatitis, around 20 years of clinical research in Europe has already been completed on the herb milk thistle, which some people are using as a liver tonic here in Australia. In Germany, a standardised extract has been approved for treatment of various liver disorders including cirrhosis. There are no known adverse side effects associated with short or long term use of this herb. A recent Australian trial of one particular Chinese herbal preparation has shown positive benefits and few side effects.
Want more information? Contact any of the following organisations:
| Australian Acupuncture Association Ltd Australian Acupuncture Assoc. of S.A. Inc. Acupuncture Ethics & Standards Org. Ltd. Australian Natural Therapists Association Australian Traditional Medicine Society Professional Massage & Remedial Therapy Soc. Assoc. of Traditional Health Practitioners Inc College of Traditional Therapies S.A. Pty Ltd S.A. College of Natural Therapy & Traditional Chinese Medicine S.A. College of Classical Homeopathy Complementary Medicine Association. |
1800 025334 1800 018228 1800 025334 1800 817577 08 8338 1267 08 8384 4229 08 8284 2321 08 8254 8602 08 8371 3055 08 8365 0811 08 8266 4979 |
The above information is a regular feature from the Hep C Review
Review
A natural food supplement or (superfood) that I have found to have helped me with my symptoms are Spirulina tablets, that can be bought at health food shops and some supermarkets. I found them to be very beneficial in that they boosted energy levels somehow for me which helped a great deal and they also act as an anti-inflammatory for the joints and muscles as well. I found that after taking them for two to three weeks that I wasn't noticing my aches and pains that I had experienced since the Interferon treatment, (the promoters claim that it cures arthritis pain). Spirulina is a form of blue/green algae that people have been harvesting as a food supplement since before the days of the ancient Incan Indians, apparently their messengers had to walk hundreds of miles, used spirulina in a hard cake form to supply them with the energy they needed.
Another (tonic) I tried was colloidal silver. I took colloidal silver for about four months as a means to hopefully rid myself of the Hepatitis. That of course didn't quite happen but I found that it certainly helped in other ways and there were no noticeable side-effects. One of the many claims that the promotional blurbs make is that colloidal silver will kill the herpes virus (along with numerous others - including Hep C) and it seems to have completely stopped any cold sore activity happening in my case which was a nice bonus as you would imagine if you ever suffer from cold sores, (I haven't had a breakout in over a year, I used to get them about four times annually).
There are many types of colloidal silver and some claim to be better than others. I am not sure if the more expensive ones are better as I tried lots of different ones and couldn't be sure which ones might have actually worked better, one health food store owner (who is a Biochemist) once told me that the only colloidal silver worth buying was one made in America and the suppliers are in Queensland and you have to send for it by mail order forms. I don't know if it is the only one worth buying but there is a considerable price difference between the American bottle and the regular ones in the shops. Some health food shops have a booklet on colloidal silver that explains about its uses.
I am always on the lookout for anything that helps relieve the symptoms of HCV so that I can still have the same quality of life that I enjoyed prior to contracting this virus that we have to live with. So if I find anything worthwhile that seems to help me, I'll let you know about it in the next newsletter. Try and keep your liver happy in the meantime, (herbs and vegetables that have a bitter taste are usually beneficial to the liver).
Fred
Tribute to Vern
Vern’s involvement with the council was on a variety of levels. He was actively involved with the Adelaide Support Group, Positive Speakers Forum and the management committee. Committees being what they are, we were involved in a variety of disputes, discussions and decisions; some of which were quite heated affairs!
Our memories of Vern are of a sane practical man who had a wide experience in the work force and in life. He always had something useful to offer and often provided a sensible solution which allowed an issue to be resolved amicably. We remember most his humour and his humanity, always understanding how the worker might feel, always trying to see both sides of the issue as a mentor of ethics – being fair and seeing justice done. His sense of humour was ever present, blunt but clean.
People would speak of “Jan and Vern” - they were seen as a devoted couple who knew each other well and were accepting of each others feelings and foibles. Vern often referred to his family, it was always clear where his heart lay and what a firm foundation he and Jan had built for their family.
Over the course of his involvement with the council, Vern’s health did deteriorate and he was often having treatment and monitoring. Despite his ill health, he was uncomplaining and seldom raised his own physical problems. When he did chat occasionally, he was stoic about his situation and seemed to be very philosophical and calm. His was not to ask “Why me?” or “What have I done to deserve this?” but rather “What can I do to help?” Vern was a man of true integrity.
Our hearts go out to Jan and family at Vern’s tragic, premature death. We send our condolences and thank the family for the contribution Vern and Jan made to the Council
Peer Support
The Hepatitis C Council has been offering a telephone information and support service for three years. This has been well utilised by the hepatitis C affected community and callers have often asked workers at the Council if they are HCV +. It became apparent that people appreciate and often prefer speaking to someone who is living with the virus. In April this year, the Council ran it’s first training course for people who are HCV+ to be trained as peer support telephone officers. The training ran over three days and covered areas such as communication skills, listening skills, peer education, peer support, confidentiality and HCV information. Six volunteers completed the training and are now rostered for one four-hour shift a week.
The Council will be looking to conduct this training again in six months and if you are interested in taking part please contact the Council on 8362 8443.
Positive Speakers
The Council will also be conducting another Positive Speaker training course in September running over four Sundays. This training involves public speaking skills, how to tell your story, answering difficult questions and speaking to specific groups. People who take part in the training are then available for speaking engagements for community groups, schools and healthcare workers. Speakers are paid for their time and feedback from groups has been that people have gained a lot of benefit from hearing someone tell their story about living with HCV.
If you are interested in becoming a positive speaker contact the Council on 8362 8443.
Mail Bag
Hi,
I was diagnosed HCV + approximately one year ago. I found on diagnosis that my life was about to change. Discrimination from doctors and health workers! A new and dark secret to keep from people that actually matter to me. I’m sure that many can relate to this.
Initially I was distressed about the complete lack of information, counselling and support that was offered, and in desperation rang the Hepatitis C Council to try to find out if there was in fact any more information available. Since that time I have become involved in the Council as a volunteer and have learned that even though there is information available, there is still a huge gap and many grey areas.
There are many HCV + people, who like me are asymptomatic. We have some fairly frustrating problems in as much as, where we may have normal ALT levels, and it is possible to have cirrhosis and normal ALT levels, the costs of testing are fairly prohibitive. If you wish to find out about your viral load, it is going to cost you! If you wish to find out about your particular genotype, then that is going to cost you as well. Furthermore, if your ALT levels are normal, then you don’t fit the criteria for any of the current treatments either, despite the fact that treatment has a higher success rate with this scenario. Of course this can all change if you have the funds to pay. Without going on and on, we are told that with anything from breast and prostrate cancers to ringworm and head lice, early treatment gives the best outcome. Why then do people living with HCV have to wait until the disease has progressed to a stage where it is causing illness before anything is done? Then of course, when treatment for many people is ineffective, these same people are labelled as non-responders! Why is this? My feelings are that we are being discriminated against by our own government.
Some years ago the HIV/AIDS community faced similar problems and with a lot of long and hard work, managed to attract substantial government funding to help research their disease. There is an estimated 200,000 people in Australia living with HCV and we all need to band together and demand that our government do something real about researching our disease. We need to demand that the general community be educated including schools, workplaces, doctors and health workers, to name a few, perhaps some of the discrimination within the larger community could be dispensed with. Maybe we, the HCV community could learn some valuable lessons from the HIV/AIDS community towards achieving this.
The HCV community is labelled as being unclean, contagious, a danger to others and quite disgusting by a large percentage of the general community. These views are fear based views, fuelled by the media. A friend of mine said it all when she stated that she wasn’t proud of the fact, she was HCV +! Please, where does pride come into a disease? Do people feel shame because of their sugar diabetes situation or their high cholesterol or high blood pressure or even their cigarette smoking related diseases? Why do people with HCV need to feel shame? Why are we looked on with suspicion by so many? And why are we not standing as one to help ourselves to combat this disease? If we start to stand up for ourselves in the face of adversity, we can achieve a lot in the areas of discrimination, education, support and treatments. If we keep silent and sit in the back row then things will inevitably stay the same.
Sharon