Newsletter Backcopies - Editions Preface Brief History

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					        HEPATITIS C COUNCIL OF NS W
                Newsletter Backcopies - Editions 1-9

                         Preface           Brief History

 The identification of the hepatitis C virus (HCV) in 1988 established a new era in the
 scientific understanding of hepatitis C, previously known as Non-A/Non-B hepatitis. In
 stark contrast though, individual people affected still faced confusion and ignorance
 regarding their condition. A need for community-wide information and support was and
 remains clearly visible. Professor Geoffrey Farrell of Westmead Hospital recognised
 this need. He supported the setting-up of a patient support group that inaugurated in
 November 199 1 as the NSW Hepatitis C Support Group. The primary purpose of this
 group was to provide support for people with HCV, and to represent the interests of
 such people within the broader community. A toll-free 008 support line involving a -
 network of metropolitan and non-metropolitan volunteer telephone counsellors was
 established.


 The group became incorporated in February 1993, as the Australian Hepatitis C
 Support Group, soon gaining the status of a registered charity. While remaining
 committed to client support services, the group increasingly began to address public and
 peer education. The focus of the organisation had begun to include Federal issues a s
 well, such as access to Interferon treatment and social security pensions. Liaison with
 peer health and welfare based agencies had also increased considerably.


With federal funding submissions rejected, the group could not function on a national
level, and in July 1994, the Australian Hepatitis C Support Group reformed as The
Hepatitis C Council of NSW, moving to its first offices at Belmore St, Suny Hills in    '


Sydney.


1994 also marked the NSW Health Department's formal acknowledgrnent'of the
Hepatitis C Council's role by providing ongoing funding for the provision of
counselling and support services. This marked the beginning of a shared commitment to
address HCV need within the NSW community.


In October 1994, NSW Health convened a state HCV Taskforce, aimed at identifying
gaps in HCV healthcare provision, and proposing strategies that would meet such gaps.
The Hepatitis C Council was invited to sit on this taskforce along with other
community-based groups and government departments.


In December 1994, we relocated to more suitable office accommodation at Crown St,
Surry Hills. In February 1995, NSW Health approved further funding as a contribution
to our core operating costs. This has enabled us to provide a more professional and
effective service.
Update from                                     HEALTHY CARRIER STATE
America
Geoffrey C Farrell, MD, FRACP
Robert W. Storr Professor of Hepatic
                                                -AN UPDATE free HCV patients 'frequently have
                                                            These results indicate that symptom

                                                                                                    chronic hepatitis'. Further, as is now
Medicine                                                                                            commonly accepted, ALT values are
The Annual Scientific Meeting of the            Two recent articles published in the
                                                                                                    not reliable predictors of liver patholo-
American Association for the Study of the       Lancet have highlighted the disparate
                                                                                                    gy, nor were tests for antibodies for
                                                stance now being taken by researchers               HCV. However their research indicated
Liver covered many advances in knowl-
                                                over the idea of the existence of ?rue              that the PCR test results 'were signifi-
edge about hepatitis C. An important            healthy carriers of HCV (La. individu-
aspect is the contribution of hepatitis C                                                           cantly associated with liver histology'.
                                                als who have persistent antibodies to               (note: In Australia, PCR is limited to
infection to chronic liver disease. A n         the hepatitis C virus (anti-HCV), yet               use as a research tool only as it is diffi-
extehsive survey conducted by the United        who appear to have no symptoms or                   cult to do reliably and is extremely
 'tates Centres for Disease Control             signs of liver disease. Recent research             expensive.)
,~tlanta,  Georgia) found that chronic viral    which challenges this idea obviously
                                                                                                    In The Medical Journal of Australia,
hepatCtis is now equal to, or more impor-       has important implications for the clini-
                                                                                                    16 August 93, Dr. Nick Crofts et al who
tant than alcohol abuse as a cause of           cal management of patients.
                                                                                                    were researching the epidemiology of
cirrhosis in the United States, Overall,        In Lancet (20 Feb 93) a group of Italian            infection with HCV among IV drug
44% of cases of chronic liver disease           researchers published findings which                injectors stated that their findings sup-
were attributable to hepatitis C compared       'indicate persistent hepatitis C                    port a 'relationship between PCR posi-
with 39% to alcohol abuse and 14% to            viraemia is not invariably associated               tivity and a poor long term outcome in
hepatitis B. Another interesting statistic is   with liver disease" (see our Newsletter             terms of disease progression, provid-
                                                No. 6) One theoretical hypothesis sug-              ing no support for the concept of a
the relative importance of chronic viral
                                                gests that all four subjects may have               'healthy cartier state" in chronic hepati-
hepatitis and AIDS (HIV infection) as a         been infected by a non-virulent strain,             tis C infection.' At the recent National
cause of death. In the United States, it is     but as well, this study was limited to              Symposium on Hepatitis C in
now estimated that the annual death rate        only four patients over three years, and             Melbourne, leading Australian and
from HIV is 16,000, from HBV 5,000 and          the span of the illness from initial infec-         international researchers and clini-
         C
from H V 8,000. There is no reason to           tion was not indicated.                             cians, all stated that the concept of a
suspect that the proportion of cases is any     In another Italian study in Lancet (19              'healthy carrier state" could no longer
different in Australia, except that HIV         Sept 92) liver biopsy samples were                   be readily accepted. In a paper given
infection is probably less prevalent here       taken from 23 symptom free HCV                       by Dr Paul Desmond of St. Vincents,
and H V infection at least as prevalent a
       C                                   s    patients (16 of whom had normal ALT                  Melbourne, a study conducted with 331
in the USA.                                     values) to assess the prevalence of                  patients of which 126 had liver biopsies
                                                liver disease and to see whether tests               found that all 126 had evidence of liver
There are several interesting new facets                                                            disease. 67% had chronic hepatitis and
   !out treatment. More intensive early         for anti-HCV (Elisa-2 & Riba-2 and
                                                HCV-RNA (PCA) correlated with                        33% had
treatment (high dose interferon) seems to       pathological findings. The biopsies dis-             cirrhosis. There was no difference in
make no difference, unless 10 million unit      closed 'features of chronic liver dis-               median ALT level between ihose with
doses are used. This gives rise to a higher     ease in 16 cases, including 10 with                  cirrhosis and chronic hepatitis. Biopsy
long-term response rate but one-third of        chronic persistent hepatitis (6 normal               performed on 8 patients with persis-
patients cannot tolerate this dose due to       and 4 abnormal ALT) 5 with chronic                   tently normal liver function tests
severe side-effects, so it doesn't appear to    active hepatitis (2 normal and 3 abnor-              showed chronic hepatitis in all.'
                          J
be a very good option. Cn the other hand,       mal ALT) and ! with cirrhosis (normal                As the balance of research shifts to
at least three papers described more pro-       ALT). The remaining 7 patients had                   oppose the concept of a 'healthy carri-
longed treatment (12 months versus 6             normal liver histology.' None of the 23             er state" it is now important that people
months), including a study of 2,000             patients had presented for signs of                  with chronic hepatitis C should assess
patients in Italy. These studies all show        liver disease at physical examination.              the value of this research in making
                                                                                                     lifestyle and treatment-seeking deci-
better long-term results (generally a long-
                                                    very encouraging resufts, although the           sions (see also comments by
term response rate of 35-40%) amongst                                                                 Professor Farrell in Newsletter No 6
                                                    numbers treated were small. There were
those treated for 12 months versus 15-                                                                advocating vaccination against
                                                    also three small studies on the effects of
25% long-term response rate in those                                                                  Hepatitis B for HCV patients). Further
                                                    increased iron concentration in the liver
treated for six months.                                                                               as an organisation we should question
                                                    and response to interferon. These studies
There were two studies of ribavirin. My                                                               the use and value of ALT levels as a
                                                    seem to find that liver iron content is high-     criteria for limiting entrance to drug tri-
impression is that when this agent is used          er amongst people who don't respond, but
on its own the results have been disap-                                                               als.
                                                    this is probably not of practical value           Finally, such research should add fur-
pointing. Many patients have improved               because when the iron was removed (by
their liver enzymes but the hepatitis C                                                               ther discredit to those health officials
                                                    venesection) the subsequent response to           who wourd still seek to play down the
                           n
virus seems to persist. O the other hand.           a further course of interferon was not            true debilitating nature of this disease.
two studies of combined treatment with              beneficial in the long-term.
interferon and ribavirin seemed to show
 NEWS AND NOTES                                       c. members of professions potentially
                                                      involved in transmission (eg surgeons,
                                                                                                  Reprint from earlier
                                                                                                                                      2.   i




   This last three months has been a peri-                                                        newsletter on Buist's
   od of considerable activity for the                dentists, tattooists, acupuncturists;
   Group right round Australia as at last             d. those diagnosed as anti-HCV posi-        recommendations for
   HCV is getting more of the attention it            tive;                                       vitamin and herb intake for
   deserves from health authorities and               e. undergraduate and postgraduate           Hepatitis C patients.
   the media.                                         medical and paramedical students;
   Probably of most importance was the                                                            Vitamins: 30 mcg beta carotene daily
                                                      f. prostitutes, and
   delivery at the beginning of November,                                                         1-2000 mcg Vitamin C one or two
   of the R e ~ o ron Heoatitis C from the
                    t                                 g. the general community.
                                                      8.5.1 "It is recommended that continued     times daily (taken as sodium or calci-
   Workina Partv convened bv the
   National Health & Medical Research                 review be conducted of the data on the      um ascorbate if you are inclined to
   Centre in Canberra to the meeting of               efficiency of treatment regimes such as     acidity)
   state and federal health ministers.                interferon alpha, ribavirin and other       500 international units Vitamin E
   It is 36 pages long (without references).          antiviral or immunomodulatory thera-
   Amongst other things it states:                    pies in chronic HCV. And, also a            Foods: Kyolic Garlic - 5 ml per day
   S1.2 "Additional studies are needed to             detailed cost-effective analysis of the     Foods high in sulphur amino acids and
   define more precisely the infection                role of interferon alpha in the treatment   methionine (fish, eggs and lentils)
   status of patients and the likelihood of           of HCV."
   disease progression. Guidelines on                                                             Anti-viral herbs: Phyllanthus Amarus
   diagnostic testing strategies and inter-                   --
                                                                                                  and Hypericum Perforatum (St. John's
   pretation of lahraiary results are                 Media watch and contacts have been          Wort) Use one OR the other.
   clearly required."                                 ably led by John Mackenzie who has
   'The reasons for the variability in dis-           done a sterling job in keeping pressure     Anti-inflammatory herbs Silibum
   ease severity are largely unknown.                 on radio stations particularly to broad-    Marianum (St. Mary's Thistle)or
   However, there are least 6 major                   cast latest developments as they have       Bupleurum Falcatum (to reduce the            \
   strains in genotypes of HCV, and it is             come out from the Melbourne                 inflammation and pain in the liver)
   thought that some are more pathogenic              Symposium and so on. This has result-
  than others. It is also believed that               ed in many enquiries for information
   repeat infection of a carrier with a differ-
                                                      from all states (except perhaps
   ent strain will exacerbate underlying
   liver disease. It is not known which               Tasmania) and some good contacts.
  strains predominate in Australia and the                           *****
  relative susceptibilities of various ethic          South Australia, Canberra and
  groups and the consequences of HCV                  Brisbane will have held their inaugural     Ethiopian Proverb
  are also unknown."                                  meeting to establish a state branch of
  S1.3 "Screening: Prospective donors                                                             "When spider webs unite, they can
                                                      the national support group by the time      tie down a lion" This saying under-
  who are + for HCV antibody should be                this goes to press. We wish them well.      lines how important it is for us all the
  deferred from donating. There should
  be selective testing of others in the                              *****                        unite to get some attention for Hepatitis
  community as clinically indicated." (In             Our patron, Professor Geoffrey Farrell,     C from Health Departments. The let-
  4.1.7 these are defined as patients with            has been honoured with the conferring       ters to members of parliament were an
  a clinical illness consistent with hepati-          of a special Professorship in Liver         example of this, and I am sure were
  tis; anyone with a history of injecting             Research. Congratulations!                  the reason why we finally were granted
  drug use; anyone who has received                                                               an interview with the head honchos of
  many transfusions of blood or blood                                a****
                                                                                                  the N.S.W. Health Department.
  products; renal dialysis patients;                  Western Australia and the NSW
                                                                                                  Pressure certainly works, as our
  prospective organ or bone marrow
 donors; patients attending STD clinics;
                                                      Branches are now usually asked to
                                                      comment on any government publica-
                                                                                                  friends in Western Australia found out.      C
                                                                                                  To get nn inter;iew with the Health
 patients with a historj of imprisonmeni              tlons on HCV - however, we were not         Department there, they not only wrote,
 and patients with a tattoo."                     '   asked for any input into the federal
 S1.4 "Therapy: Normal immune globu-                                                              but when they received no reply, they
                                                      working party!                              faxed him every day. Look what they
 lin is of no benefit in post exposure
 prophylaxis or the management of this                                                            got - $250,000 for research into HCV
 disease. The role of Interferon is                   The President, Warren Wright, is hope-      and the user community!
 uncertain in acute hepatitis C.                      fill of obtaining a meeting with Senator
 6.1.2. 'It is recommended that ongoing               Richardson, Health Minister in
 prospective studies be conducted of                  Canberra, at the beginning of
 outcome in Australian patients with                  December, to discuss our needs. Any
 chronic HCV, including those treated                 pressure you can bring on him through
 with anti-viral therapy."                            your federal member would be good
 6.1.3. It is recommended that centres                value - numbers of people from all
 involved in managing hepatitis C gather
data systematically to allow the natural
                                                      round Australia jumping up and down.        STOP PRESS
                                                      do have a helpful impact - it makes the     All three applications for federal fund-
history to be defined: (i.e. a central
                                                      ground shake and politicians feel           ing were rejected. Please seek the
registry and regular analysis)
                                                      shaky!                                      assistance of your local federal mem-
7.1.1. "It is recommended that educa-
tion and counselling programmes be                                   *****                        ber to find out the best ways of achiev-
established for:                                      If you are not a financial member, you      ing funding for a secretariat for us.
a. members of high risk groups, includ-               must renew now!                             NSW will have a funded full time coor-
ing enhancement of current education                  $25 or $10 (Pension No. Please)
strategies for injecting drug users;                                                              dinatting early next year under the Non
b. health care workers and others occu-               $1 5 Newsletter only                        Government Organisations grant!
pationally at potential risk
                                                                                               From NEWS, in
Dr Miriam Alter, a leading epidemiolo-       Sexual risks were greatly increased by               NATURE,
gist studying Hiv in the USA, spoke to       promiscuous behaviour, syphilius and
medical professionals at Prince of                                                                     Vol362. March 93
                                             acts involving trauma and blood.
Wales Hospital in Sydney in October.         Dr Alter then referred to a USA study in      In Japan the Hayashibara
Statistics she disclosed alerted those at    which patients were monitored for             Pharmaceutical Company has been
the lecture to the serious nature of the     between 9 and 49 months fom the pre-          awaiting aproval for its technique of
disease.                                     seumed onset of infection. 68% had            mass producing interferon in cancer
She firstly discussed the various testing    consistently raised ALT levels and            cells in millions of mice. In this way, it
procedures presently available which         were classified as having chronic             hopes to corner the huge market for
unfortunately still do not detect 10% of     hepatitis. However biopsies seemed a          lnterferon in Japan which has 1 5 mil-
                                                                                                                                .
sufferers, give frequent false positives     more accurate predictor of prognosis.         lion carriers of the HCV virus, a far larg-
on first testing and no way to distin-       Those acquiring HCV through blood             er proportion of the population than in
guish between acute and chronic phas-        transfusions (Because of greater viral        the USA or Europe. lnterferon treat-
es of the disease. Hopefully the third       load received) had a greater likelihood       ment now accounts for 1 % of the total
generation test to be introduced in the      of developing chronic active hepatitis.       medical bills in Japan, as tens of thou-
near future should be more reliable.         Reference: The Natural History of             sands with evidence of active chronic
 In the USA, 21% of those suffering          Community Acquired Hepatitis C in the         hepatitis in liver biopsies are allowed
from hepatitus have HCV.                     USA, New England J. Medicine, V 327,          interferon treatment.
                                             No 27, Dec 31,1992 (1 899-1   904)            Japanese hospitals have a strong
                                                                                               .....
                                                                                           ... r ~ v fnr r.-""..'...J ",.r"..".."
                                                                                           i n"" n t i" n nrocrrihinn o ~ n n n c i v ~
                                                                                                        ,-.

       NOTE from the NSW PUBLIC HEALTH BULLETIN                                            interferon treatment, as they buy and
                                                                                           sell their own drugs and can make
                               (Vol4 No. 10, October 93)                                   profits.
"Since clinical hepatitis A may be more       booster dose between 6 and 12 months         The prevalence of Hepatistis C in
severe in persons with chronic disease             the primary course results more
                                                                              in           Japan may be due in part to the com-
due to hepatitis viruses or other aetiolo-                                                 mon practice several decades ago in
gies,  use of              A vaccine in      persistent following the booster dose is
                                                                                           reusing needles in mass vaccination
these persons mav be considered. The         unknown."                                     programmes, resulting in 1OoAof
side eifects are ubally mild and con-        Alsofrom the same publication:                patients receiving blood transfusions
fined to the first few days after immuni-
                                             Notifications of Infectious disease in        being infected with the virus because
sat,on. common effects are fever,
                     side
malaise. fatiaue. headaches. nausea          NSW for the twelve months Seotember           of the high incidence of HCV among
         .     "   .
and loss of appetite.. (~dito'r'snote:                                                     blood donors.
                                             92 to september   93.
"What's new?")
Two 1 ml doses of vaccine are given 2-4             AIDS
weeks apart by intramuscular-injection              HIV                      407
in the upper arm. The antibody                      HEPATITIS                425
response may be impaired in people
whose immune system is compro-                      HEPATITIS B              2,500
mised, such as HIV+ individuals. A                  HEPATITIS C              3,787




  his article reported Farrell as saying     The Group has written letters to the          risk of having contracted HCV, more
that in N.S.W. there has been a political    Editor of the S.M.H. and also to Dr.          availability of hepatologist health care
antithesis towards Hepatitis C disease       Morey about the untruth of her state-         for country areas, and listing of
in that the Health Department is refus-      ments and her scurrilous vilification of      lnterferon on the Pharmaceutical
                                             Professor Farrell. Other letters in sup-      Benefits Schedule so that it was afford-
ing to warn people who were at risk of       port of what he has said have been            able for patients who were not eligible
contracting the disease fprior to 1990.      written to the Department by hepatolo-        for inclusion in the Australian studies.
Dr. Sue Morey, Chief Health Officer of       gists in areas such as the Hunter, the
the Department denied this, saying ibe       Central Area Healih Sewice and ihe            In stztes such as Oueensland, South
department had done everything it            Southern Area Health Service.                 Australia, Tasmania and Victoria.
could, and continued to make more                                                          where governments seem to be doing
                                             As the Department tries to avoid its          nothing, members really have to start
untrue statements, such as                   commitments by putting all responsibili-
                                                                                           from scratch to try and get them to pay
                                             ty for how health resources are spent in
1. that they don't fund special diseases     each area on to that area's Chief             attention to Hepatitis C, stressing that it
   (they do fund HIV, on a one-to-one        Executive Officer, it is important that       is 5 times more prevalent than AIDS,
   basis with the Commonwealth: and          every member of our Group should not          and that it is a potentially fatal disease
   also cancer for example)                  only again make contact with their local      which has major expense ramifications
                                             member stressing how illadvised, heart-       in the future.
2. that testing of "at risk" persons
                                             less and short sighted the Department         In Western Australia, the Government,
   meant they had to go to Westmead          is, but also contact their Health Area        thanks to pressure from the Group
3. that there was no treatment, and          Executive Officer to ask for more
                                                                                           members over there, is running press
   that it still had to be defined which     resources to be spent on HCV in their
                                             area. We need facilities for counselling      and TV advertisements, indicating
   people were helped by interferon                                                        those who may be at risk and offering
                                             by counsellors trained in HCV issues,
4. that Professor Farrell was only out to    both post testing and further into the ill-   diagnostic facilities and counselling for
   get major funds for his personal          ness, and for both the patient and their      those who come forward.
   research.                                 'significant others', warnings to those at
 SOME COMMON ANXIETIES
 WE SHARE
At a recent meeting of the Group held              Giving up - alcohol, being able to         * For depression - regular exercise as
at Westmead, led by Cecilia Raffo, we              keep up with everyone else, fre-           part of a routine; laughter and comedy,
shared our experiences of anxieties                quency of sex because of being too         a positive outlook; God; breathing tech-
and concerns we had faced, or were                 tired, career prospects, financial         niques, yoga, meditation; Quest for Life
currently facing, in coming to terms with          security
our disease.                                                                                   For fatigue - relaxation tapes; cat
                                                   Anxiety about treatments available -       naps; exercise; good nutrition; reike
Some of these were expressed as:                   interferon and the side effects -          and massage
                                                   medical procedures & biopsies -
   Worry about pinpointing the source              how to evaluate alternative treat-                          -
                                                                                                For frustration changing one's atti-
   of the infection - its implications for         ments - the very lack of a positive        tudes to be more forgiving of oneself;
   social responsibility                           "curen                                     creative visualisation; positive affirma-
   Lack of education in the community,             Anxiety about the burden being             tion
   leading to a feeling of alienation              placed on your partner and concern            For financial anxieties - a clearer
                                                   for himlher                                understanding of the DSS pension net
   Lack of information among medical
   personnel - leading to confusion and            Being unable to get any respite from       for physical disability "employee
   increased anxiety                               either the disease, or the worry           friendly" work practices
                                                   about what it implies for the future         For family - the availability of coun-
   Trivialisation of the disease and a
   feeling of patronage, by medical per-           The stress of keeping up what you          selling services to help sort out any
   sonnel, leading to alienation and               are doing plus wondering how long          relationship problems which may arise,
                                                   you can keep it up                         and to give an opportunity for the part-
   increased anxiety
                                                Some techniques which had been                ner to vent their concerns/frustrations
   Concerns about disclosure and the
                                                found to be helpful in combating these        Any comments anyone has about this
   effect this may have on relationships        worries were:                                 list would be very helpful, as it may be
   and job acceptance
                                                  For ignorance - more accessible             useful as a basis for us to talk to com-
   Discrimination in the work place                information                                munity groups about HCV and what it
   (particularly loss of job)                                                                 means to us. Please contact Audrey
                                                  For alienation - availability of good
   Changes in lifestyle, forcing us to                                                        Lamb, c/- P.O. Box 98, Westmead
                                                counselling to reaffirm one's validity
   evaluate our lives so that we have to                                                      2145
                                                and help maintain self esteem; volun-
   put our health first.                        teering service




(Adapted from the Arthritis Self Help Course    pared. If Group A does better than            cles submitted on research into treat-      (
of Dr. Kate Lorig, Stanford Arthritis Centre,   Group B the conclusion is that the new        ments very carefully in terms of the
Stanford University. U.S.A.)                    treatment helps. But if roughly the           soundness of research. Newspapers or
                                                same proportion of people improve in          popular magazines do not necessarily
If you are considering a specific form of
                                                both groups, the conclusion is that the       do such careful checking:
alternative therapy, there are some
                                                new treatment has no effect or at least
important questions you should ask.                                                           5. Does a diet eliminate any basic
                                                no greater effect than the traditional        food o r nutrient? For example, if the
1 . !s proof by testimonials (e.g. Mr.          treatment.                                    carbohydrate food was eliminated, a
Smith says i t works) or by scientific                                                        diet may harm your health. Reputable
                                                2. Were people who used the treat-
research? (and if the latter, was a                                                           dietary guidelines prepared by govern-
                                                ment similar to you? For example,
"control group" used?) Observations of                                                        ment health departments recommend
                                                was their arthritis less severe, were
single cases, such as those reported in                                                       having food from all food groups.
                                                they younger, were they leading a
testimonials, simply do not give enough
                                                healthier lifestyle in such areas as nutri-   6. Does a diet stress only a few
information to tell whether treatments
                                                tion and exercise?                            foods? If it does you will have little
really work or would work for others.
Clinical trials help us sort out the            3. Could anything else have caused            variety in your meals, leading to an
effects of the treatment from psycho-           the results being claimed? For exam-          unbalanced diet and possible harm to
logical influences, coincidence and             ple, could it have been a coincidence,        your health.
other factors.                                  and the belief that some treatment will       7. Can you afford the treatment?
                                                help can have a "positive thinking" influ-
A clinical trial is an experiment in which                                                    8. Are you willing to go to the trou-
                                                ence on someone's feelings - the
one group of people gets treatment                                                            bleiexpense?
                                                placebo effect.
(Group A) a similar group receives no
                                                                                              9. Can you think of possible dan-
treatment or a "traditional" (long stand-       4. Were the results of research pub-
                                                                                              gers/harm?
ing treatment (Group B),and the                 lished in a reputable journal? Editors
results for the two groups are corn             of scientific journals usually check arti-
*   REPORT O N THE NATIONAL HCV
    'SUPPORT GROUP CONFERENCE
    (held Melbourne, October 93)                   not sub-committees, could still par-    Following the S.B.S. Date Ltne telecast
    by Ali Marsh, President W.A.                   ticipate in national body meetings      recently, we had a phone call from a
                                                                                           doctor who has been researching why
    As is clear from these newsletters (and        but not have voting rights.
                                                                                           some patients after surgery for cancer
    a number of other activities you may           That the basic legal compliance         go on to recover completely and others
    not be aware of) a very active and effi-       requirements for groups to become       die. His research has again pointed
    cient national body already exists: the        subcommittees of the national body      up the fact that cancer seems to devel-
    Australian Hepatitis C Support Group.          would be discussed with groups (or      op from oxidation caused by the
    The Group's existence is due to the            potential groups) in each state.        chemical processing of some input Into
    dedication of a small number of individ-                                               our bodies.
    uals who have put enormous amounts             That membership fees be divided
                                                   between the national body (to cover     Dr. Fitzherbert's concern was that
    of unpaid time and energy into estab-                                                  lnterferon gamma (immune interferon)
    lishing and maintaining the Group.             the cost of national newsletters etc)
                                                   and the state subcommittees - the       is known to produce oxidation as it
    However, as with all initiative which are                                              reacts and is broken down in the tis-
    established quickly out of an urgent           rate to be precisely determined.
                                                                                           sues, and he felt that patients put on
    need, the time comes for clarifying,           That state subcommittees could          Interferon should be aware of this as it
    streamlining and forward planning.             incorporate at a state level - such     could possibly be carcinogenic.
    This report concerns the outcome of            incorporation being thought to be       (However interferon was first used to
    such an activity.                              necessary to obtain state funding.      combat cancer.)
                                                   Joining the national Council as a       There are many different interferons.
    The Hepatitis C Symposium held in
                                                   subcommittee was to be encour-          All interferons are polypeptides, how-
    Melbourne on October 8 1993 (and for
                                                   aged because it ensured state rep-      ever alfa interferon is a protein which
    which we gratefully acknowledge the
                                                   resentation at a national level,        is acid stable. Gamma interferon is a
    contribution of Dr. Katrina Watson, the
                                                   meant that states could access fed-     glycoprotein and is acid labile.
    organiser, in allowing us 6 representa-
    tives at half price as Observers) was          eral funding, and obtain help and       It is suggested that nitric oxide is pro-
                                                   support from the national body.         duced during the action of gamma
    used as an opportunity for representa-
    tives of existing Hep C Support Groups                                                 interferon, and has been shown to be
                                                The above ideas were to be taken
    and other people interested in estab-                                                  mutagenic. This does not appear to be
                                                away and discussed with state commit-
    lishing them to meet the next day and                                                  the case with alfa intron-A. However,
                                                tee members before final decisions
    talk about how our national body can                                                   Dr. Robert Buist suggests that whenev-
                                                were made. (Note: the complex issue of
    best operate.                                                                          er anyone is on interferon, they should
                                                national decision-making also needs
                                                                                           be taking anti-oxidants (mainly C and
                                                further discussion.)
    It was agreed that a national body rep-                                                E) as a precaution.
    resentative of state Hepatitis C Support    It was also agreed that communication      Dr. Fitzherbert poinrs to the growing
    Groups was essential and that its pur-      between state representativeswould         evidence that selenium is necessary
    pose should be to:                          occur regularly via teleconference. The    for the uptake of these antioxidants,
      Support state groups in their activi-     first teleconference is planned for late   and suggests that Selenomethionine
      ties
                                                January 1994.                              (100 - 200 mcg) should be taken daily
                                                At the end of the day many important       to potentiate the intake of beta
      Coordinate national strategies and                                                   carotene and vitamin E, as our soils,
      activities as regards media, influenc-    issues had not been discussed and
                                                were listed as agenda itsms for future     and hence our crops and livestock are
      ing policy making, lobbying and pro-                                                 deficient in selenium.(Journal of
                                                teleconferences.
      moting research                                                                      Biological Chemistry, Vol268, No 4,
                                                All told, the day was extremely benefi-    Feb 5 1993, p 2572-76, and Free
      Secure and disseminate federal
                                                cial. A number of important issues were    Radical Biology & Medicine, Vol 14,
      funds to state groups on a needs
                                                discussed and clarified and plans were     pp 473-82. 1993) Dr. Buist also sup-
      and feasibility basis
                                                made to facilitate this process in the     ports this.
      Facilitate communication between          future. Some of the best things about       Dr. Fitzherbert also points out the
      states.                                   the day were being able to put names       advantages of Zinc which, in small
                                                to faces, talk to people face-to-face,     amounts, is an essential element in the
    It was also agreed in principle:
                                                and to sort out confusions and misun-      development and function of the
      To accept the existing Australian         derstandings. The outcome has been         immune system. (Zinc is being used
      Hepatitis C Support Group as the          increased respect for other members,       quite widely in trying to combat the
      national body                             an appreciation of their particular         effects of the HIV virus.)
      To change the name to the Hepatitis       strengths, and the formation of a truly
                                                collaborative working relationship
      C Council of Australia (HCCA)
                                                between people across Australia whose
      That the HCCA should be governed          primary aim is to further the needs of
      by a committee comprising two             the Hepatitis C infected and affected
      members from each state sub-com-          community.
      mittee
                                                Many thanks to the Melbourne Group
      That representatives from states          who did a wonderful job making us feel
      without established support groups,       welcome and hosting the meeting.
      or from support groups which are
                  Mind Power
                 vs Drug Power                                                                                                     --

                                                                                          (Adapted from an article by physiotherapist
                                                                                          Cherry Lang and published in National
  (Written by an unnamed Melbourne psychologist and printed in the                        Haemophilia No 74 May 1993)
  Arthritis Update magazine, V o l 6 N o l )                                              There is now a considerable amount of evi-
  When I was a little boy the words mind      at the helm of a sailing craft, even in     dence indicating the negative effect of high
  power always gave me goose bumps.           lively seas, seemed to protect me from      stress levels on immunity and health in both
  They conjured up pictures of a powerful     motion sickness. This observation                                              t
                                                                                          healthy and "sick populations.A the VII
  man staring at someone unblinkingly         points to another factor of mind power:     InternationalConference omn AIDS in
  and making them rise in the air,or a       That of being in control over events in
  kind of combination between Ali Baba        our lives.                                  Florence (1991) a number of papers were
  and his "Open Sesame" magic. and a                                                      presented which demonstrated negative
                                              How does all this apply to pain and
  regimental sergeant major who makes         illness?                                    associations between stress and various
  hundreds of men stand to attention                                                      measures of helth and immunity in people
  looking like stuffed carp.                  The noxious sensation of pain or illness
                                              invariably puts our whole nervous           who are HIV positive.
  In the course of growing up, the little    system into a state of alarm. If this is a   Some people, on receiving a diagnosis of
 boy observed the stage "hypnotist" who      chronic condition we tend to be in a
 mzde apparently ~;orrnal    people hop                                                   HIV embark on a programme of self-help by
                                             state of alarm much of the time. This is     which they hope to maximise their health
 around and utter chicken noises, the
                                             called illness-related stress. It is now     and well-being. Two strategies commonly
 aunt whose hernia was cured in one          well understood that chronic stress
 visit to a faith healer and Uri Geller who   interferes with our attention, our con-     used are exercise and relaxation, both of
 reduced the mystery of mind power to                                                     which are popular techniques for managing
                                             centration (hence it can mess up our
 the unspeakably boring level of wreck-                                                   stress.
                                             short term memory) and our ability to
 ing people's cutlery and watches.
                                             sleep well. It can weaken our immune         In general it seems that moderate regular
 Later, working as a psychologist, I saw     system and we become more vulnera-
 what mind power really was when I                                                        exercise produces benefits in terms of cel-
                                             ble to infection. It can affect our
 observed many patients learn to live                                                     lular immunity, a well a a feeling of "well-
                                                                                                             s      s
                                             stomach, bowel and bladder function.
 with incredible physical handicaps, and      It causes abnormal muscle tension           being", Aerobic exercise produces improve-
 others climb out of the pit of mental       patterns and postural distortions, which                                       s
                                                                                          ments in immune functioning, a measured
confusion and despair,. I observed how       can lead to additional pains in various      by increased T cell counts. The second is
                                                                                                          4
 other people were able to maintain          muscle groups. And of course. it leads       that it may help to buffer the effects of
 active lives and a cheerful mood in the     to mood states of irritability, despair      stress by reducing its immuno-suppressive
face of intractable pain. It became clear
to me that there was more to mind
                                             and aggression and sometimes to              impact - there is already evidence available
                                             chronic anxiety and depression.              supporting both these possibilities. The
 power than levitating objects and bend-     Sounds familiar?
 ing spoons.                                                                              third benefit is improvement in cardio-
                                             Managing your stress better can be just      vascular fitness, again also supported by
The systematic scientific study of mind      as effectiveas a powerful analgesic.
power has shown that our thoughts are        What is more, managing your stress           research.
the 'mother and father" of our feelings.     will have no negative side effects on        Relaxation offers a different range of
That is to say: what we call our feelings    your metabolism and organs.
are interpreted by our thoughts, and as                                                   benefits to exercise, but like exercise it has
a consequence of learning, the very          The issue of being in control which I        shown benefits in immune functioing in
thought can then trigger a feeling. Here     mentioned earlier plays an important         helthy people and in people with HIV. It
is an example: I am not a good "sailor"      role in our lives. It means that we know     appears that the degree of benefit is linked
i.e. I tend to get motion sickness. At       many of the events, circumstances and        to the frequency of practice: in other words,
one stage, the unpleasant experience         behaviour which trigger off an episode
                                                                                          knowin6 how to relax is not enough - it is
of feeling and being sick led me to feel-    of pain or "unwe~lness",   and we have a
                                             number of strategies ready to avoid or                                        s
                                                                                          actually doing it that counts. A with
ing nauseated even upon going aboard
                                             minimise its intensity or duration. This     exercise, relaxation has also been shown to
a stationary ship. In other words, the
sights and smells of being aboard, even      is part of good stress management, as        buffer the immunosuppressive effects of
without the actual motion of the sea.        the fact of having some control over         stress. It is most useful to learn a method
were enough to awaken the memory             events reduces anxiety and hence the         of relaxation that can be carried out in a
(thought) of being sick, which triggered     unpleasant effects of anxiety as             stressful situation rather than requiring you
the dread (feeling) of the experience,       described in the previous paragraph.         to lie down in a quiet room: relaxation then
which in triggered the nausea                Managing your illness related stress         becomes much more a part of everyday life
(sensation).                                 condition therefore, is not an alternative
                                                                                          and a useful tool of coping with those
In time, I learned that anxiety also         to sensible medical and physical treat-
                                             ment, it is an obligatory treatment which    situations. Other benefits of regular relax-
played a strong role in my anticipation.
Overcoming the anxiety helped me             needs to be undertaken at the same           ation practice are a reduction in fatigue, and
overcome the negative anticipation.          time as medical treatments.                  a reduction of pain where there are associ-
Interestingly, I also found out that being                                                ated with chronic tension.




      Have a happy, healthy Christmas
          and New Year season!!