Hepc.bull October
1999
Part One
Part One
Complementary & Alternative Medicine in Chronic
Liver Disease… A Symposium
August 22-24, 1999 National
Institutes of Health,
Bethesda, MD
By Pamela Ladds/ Sybil Stein
Chronic liver disease is a major problem in
the United States and abroad. Treatment
of chronic liver disease by allopathic methods has been a difficult issue. Treatment success is only modest, and
adverse effects and discomforts from treatment are common. When an opportunity presented itself to
attend a symposium entitled “Complementary and Alternative Medicine in Chronic
Liver Disease” at the National Institute of Health, I jumped at the
chance. The conference was sponsored by
the National Institute of Diabetes, Digestive and Kidney Diseases, NIH, and
co-sponsored by the National Center for Complementary and Alternative Medicine,
NIH, the Office of Dietary Supplements, NIH and the American Association of
Naturopathic Physicians. This seemed promising as a place in which holistic
care could be discussed and all points of view explored constructively.
The conference was a well-kept
secret. Attendance was small and
publicity limited to the NIH Website. A
quick survey of registrants and participants showed that those in attendance
were primarily presenters, posterboard authors and some people with hepatitis
who had been brought to the conference as speakers for the Sunday night panel.
The aims of the workshop were
stated as follows:
1. To assess the current knowledge on
Complementary and Alternative Medicine (CAM) for chronic liver diseases, focusing
on the available scientific evidence for efficacy and safety.
2. To identify and prioritise research
needs that will more fully define the potential for efficacy and safety of CAM
for treatment or amelioration of liver diseases.
From the reading of the aims, it
was clear from the start of the symposium that the discussion would be focused
on treatment and amelioration of a disease, and not on the well-being of the
entire person.
At no time was there even
mention that “complementary” means “to complete.”
Leonard Seeff, MD gave the
introduction and set the stage for the symposium. Part of his presentation stated that “The medical scientific
community has been sceptical about these claims [of the efficacy of herbal remedies]
and have tended to either ignore the practice or to disparage the benefit of
these products and instead have focused on their potential for toxicity....It
is therefore incumbent on the medical scientific community to give proper
consideration to the views and anxieties expressed by the public on this
issue.”
While several presentations
discussed the range of patients using complementary modalities and whether they
shared this with their allopathic (medical) physicians, the primary focus of
the conference was on herbal and botanical medicine. The sessions focused on reviewing literature and determining the
scope of use and spectrum of products used, quality assurance, minimum
scientific requirements needed for determining benefits of therapeutic agents
and exploring whether alternative approaches can be employed, determination of
scientific evidence of potential benefit of the preparations and a review of
evidence of toxicity of these products—an impressive array of goals for a 3-day
conference.
Panels started off with an
overview of the spectrum of liver diseases, what Western medicine has to offer
and what “patients” are actually doing.
Given the statistics produced around the efficacy, or lack there-of, of
alpha-interferon and ribavirin and what we know about the side-effects,
exploration of alternatives makes perfect sense. However, there was the usual concern expressed about patients
taking alternatives without “permission” and, of course, not discussing this
with their physicians. This is a debate
that has gone around and around in the HIV community for years and ultimately
comes down to the quality of the relationship between the medical practitioner
and the person living with whatever disease.
The conclusion from “experts” at this conference was a need for this
degree of openness either through relationship or legislation. As usual it was abundantly clear which of
the experts would develop a working partnership and which didn't have a prayer!
Sunday evening featured a panel
titled “Complementary and Alternative Medicine in Liver Diseases: Meet the
Experts Forum,” a forum for individuals to meet and question experts in the
field of alternative medicine regarding informed choices for treatment
strategies, co-sponsored by the American Liver Foundation and Hepatitis
International Foundation.
The patient/expert panel was
scary—not because of information shared, but because of the way in which it was
set up. The “experts,” predominantly
allopaths, sat on their raised platform.
The patients were trotted out one at a time—4 from one hepatitis
organisation and 4 from the opposition.
They were introduced by the leader of each pack. After each patient's speech, the patient was
to ask the panel two questions. There
were no questions from the floor and no discussion!
Thelma Theil, CEO for HFI,
introduced one of “her” patients as a “victim” of hepatitis C. Another woman living with hepatitis C
introduced herself by all of her hats and credentials before describing her
“most important” role—that of patient!
She, not surprisingly, chose to go only the allopathic route! Other speakers described their horrendous
journeys through the medical system—misdiagnosed and mistreated—before finding
a medical partner and exploring various treatment options openly. Another woman whose liver disease seemed due
to no known cause was offered treatment (long term steroids) that she said her
vet wouldn't give to her dog! She
finally settled on an assortment of herbal and body oriented therapies. Her liver disease is now non-active. One member of the panel immediately felt the
need to negate the treatment protocol by suggesting her liver disease would
have resolved spontaneously. At no time
was there discussion from the expert panel about the possible importance of
attitude, or taking charge of her own treatment or specific herbs. There was no recognition of the
disempowering aspect of negating anyone's treatment protocol. It is very easy to forget the power of
words, particularly from an “expert.”
And so the show went on. In the midst of all of this were some
excellent speakers with really interesting information: Ethnobotanists, studying herbs in their
habitats, working with indigenous peoples using the herbs according to their
cultures; alternative practitioners, treating the whole person, not just a
liver disease; and some allopathic practitioners, recognising the limitations
of current practice and being open to exploring other options. There were little clusters of alternative
and allopathic practitioners developing clinical trials for integrated
approaches, combining Western medicine with Traditional Chinese Medicine or
standardised herbs such as silymarin.
There were discussions about standardisation and efficacy, discussions
about growing and harvesting methods and discussions about whole plant versus
isolated active ingredients. The plea
from the West is, of course, to isolate an active ingredient, standardise it
and then test according to a Western paradigm—a double blind clinical
trial. Alternative practitioners have
pointed out for years that this is not an effective strategy and does not get
the information necessary. Just as
people are more than livers, plants are more than one active ingredient. A pharmacist and naturopath who now develops
and markets herbs handed out lists of plants with all of their components,
dozens for some plants. Assuming that
one ingredient is “the” ingredient makes no sense. A synergy is much more likely.
What was abundantly clear was that
the driving force throughout much of the conference was not efficacy, but came
down to market and turf. Much of the
rhetoric was disguised under the “we have to help them because they are too
simple, unsophisticated, ignorant, and so forth,” and therefore what we need is
more legislation, more controls and more power. It is a tough debate.
People who have spent years on a career path with beliefs about
entitlement find it very hard to share power.
Entrenchment in any belief system or model of the world sometimes makes
it hard to be open to other approaches.
It is not just in medicine where this is apparent. It is also true that there are snake oil
salespeople and frauds out there from all branches of medicine. Greed is an equal opportunity disease. It is also true that some regulation of any
product is appropriate for safety reasons.
However, how is safety determined?
There was considerable discussion around who regulates what, and
why. Many herbs are regulated as food,
not drugs, a fact that disturbs many allopaths and some naturopaths. It was clear that neither group was free of
conflict of interests. Naturopaths
probably have more to gain if supplements are regulated as drugs, a fact that
they have clearly registered! 1997
figures for the US market showed prescription drugs out in the lead at $94
billion (more zeros than I can count), over the counter meds at $16.7 billion,
supplements at $10.4 billion and botanicals gaining ground at $3.2
billion. This is not peanuts nor
chicken feed! Many of the
pharmaceutical companies also have their own supplement lines, neutraceutical
companies, and are gobbling up botanicals.
And to add to the confusion, the most prominent manufacturers of
vitamins were recently found guilty of price fixing and artificially
maintaining the high cost of these products which are added into cereals,
grains, milk, orange juice and other foods.
The final day, not only in terms
of placement at the conference but also its content, indicated the mindset of
the organisers. Panel 1 was a token run
through Chinese Traditional Medicine, Kampo (Japanese traditional herbal
medicine), Korean herbal use, European use, Ayurvedic and traditional Nigerian
approaches to liver disease. Each
speaker, most of whom had travelled from his/her country of origin and
practice, got to speak for 20 minutes and attempt to translate concepts into
Western English, both in literal and Western medicine terms. This seemed like tokenism in the extreme! It was also a set-up to invalidate other well-established
and effective medical models, some of which can prove they have been around
since the 6th century B.C. Makes our
Western medical model look pretty infantile!
The speakers even attempted to show that they integrated the American
approach with their own practices, and to offer studies in the Western
scientific model. Unfortunately the
miserable amount of time allotted meant that those of us in the audience who
were interested would only get information through back channels and a
wonderful opportunity for dialogue was lost.
They were followed by a group
whose job was to describe toxicity and adverse effects of herbs. This panel represented official bodies such
as the FDA and CDC, groups not known for their objectivity or balance. Ending the conference on a “this stuff is
bad for you” note seemed somewhat gratuitous, particularly as everyone in the
room was well aware of the toxicity of Western approaches to liver
disease. Of course toxicity is a real
issue, but presenting information based on anecdote and obscured numbers made
the regulating bodies as guilty of distortion as those whom they wish to
regulate. For example, herb toxicity
was frequently described in such clinical and specific terms as “many,”
“potential” and “possible,” a strategy that would be sloppy and invalid if
alternative practitioners used it. Case
histories where some one deviated from the recommended 3 cups a day of a tea to
17 pots, not surprisingly doing damage to herself, were offered as evidence of
the need for regulation. In that case
coffee had better be pulled, too. If I
drink 17 pots of that a day, it is clearly the fault of an unregulated
substance, not my stupidity!!
The American way of “if one is
good, more would be even better” was offered as further evidence for the need
to control and regulate. Examples were
everywhere of how regulation would prevent lay people from harming
themselves. One panellist showed photos
of mushrooms that would poison foragers.
His point was unclear. Did he
want to regulate foraging? Should
dandelions picked for salad be checked with the narcotics squad first? Maybe we should ask the Feds to regulate
prayer, which is often touted as an unconventional therapy.
Controlling of substances has
never worked. In fact, in this country,
forbidding a substance has guaranteed an increased demand. History provides many examples. Prohibition contributed to the love/hate
relationship with alcohol. Making some drugs illegal has created big
business. Suggest that an herb is about
to be regulated and watch the rush.
Make Vitamin C available on prescription only and we'll all hit the
street corners. As one toxicologist
pointed out, the horses left the barn a long time ago. Making government bodies and health care
providers, with a vested interest in maintaining the status quo, responsible
for regulating herbs and botanicals is about as smart as asking a fox to guard
the chickens!
The person given the task of
summarising the conference, Jay Hoofnagle, MD, from the NIH, had an opportunity
to synthesise different view points and keep lines of communication open. He had the opportunity to look at the
positive aspects of this conference, the useful dialogue, and the potential
benefits for people living with liver disease, as well to explore where further
work and knowledge is necessary. His
summary stated very clearly that for him the goals of the conference had not
been met. Because the botanicals could
not be supported in a double blind study, they were primarily useless. Alternative practitioners were limited in
what they could offer and what was needed was more Western science.
What Dr. Hoofnagle did say in
his last sentence was that the paradigm of the researcher and allopathic
physicians and that of many of the practitioners of complementary modalities
was very different.. The physicians still focus on disease and its amelioration
while many people involved with other modalities focus on wellness and total
health. But this sentence was lost in
the rush of people leaving to catch planes.
Those of us who walked into the
conference, optimistic that this was a place for open discussion and genuine
learning about many different approaches, left, muttering. If the National Center for Complementary and
Alternative Medicine truly wants to be effective as an NIH entity, then it
needs to at least choose its partners more carefully, and select moderators who
can open their minds and leave their arrogant assumptions and biases in a box
at the door.
So where do people living with
liver disease go from here? It was
suggested all treatment information should be filtered through experts, meaning
allopathic physicians steeped in Western paradigms of medicine.
The real experts are those
living with the disease or diseases. This
doesn't mean fire your physician. It
does mean taking the time to find one who is truly a partner, someone who is
really open to all approaches and who will work with your team of choice. It means talking to others living with liver
disease and exploring what has worked and what hasn't.
Much of this conference was
driven by the public's continued call for more holistic approaches to wellness,
instead of the focus on illness and disease. No one wants to be treated by
anyone as a kidney, a cataract, a broken bone.
This is apparent as more health centres open departments of
complementary treatment, give classes on meditation, on yoga, incorporate
living well into treatment plans for healing of chronic diseases that some
movement has started.
There is hope of a collaborative
instead of a combative model. Research projects jointly designed by
naturopathic physicians and Western doctors are in the works. Professionals
from the same city but differing areas of expertise met in person for the first
time. Doctors such as Ted Kapchuk, who writes and speaks of the importance of
the rituals of healing instead of the regimes of curing, is on staff at
Deaconess Hospital in Boston.
But until the recognised Western
medical community can begin to focus on patient wellness and not on the absence
of disease, this dialogue will continue to short circuit itself during symposia
such as the one just presented.
Hepatitis C- an Alternative Approach
Matt Dolan and
John Tindall
The study of
hepatitis C is full of opposing opinions and diagnoses. It's very confusing for the patient. In 1994 Matt Dolan, together with another
HCV-infected individual, started a support group in London. At this point Matt did his research online
and investigated alternative medicine.
From this research it appeared that drug therapy was the only
answer. However, he met other people
who were into alternative therapy and eventually his interest was piqued. He drew up a list of herbs for peripheral
symptoms, herbs that were immune modulators and antivirals. He came up with a list of about 40 herbs
that he felt were best for Hep C, but when he met an herbalist, he was told not
only that these herbs were wrong, but also that perhaps the Western perspective
was not the best approach. Chinese medicine became the key for Matt both
psychologically and physically. John Tindall has been instrumental in all of
this through the Gateway Clinic. Matt’s experience at Gateway helped to open
his mind to other approaches and he wrote the Hepatitis C Handbook to share
what he has learned.
The Gateway Clinic
in London clinic treats HCV, HIV/AIDS, and cancer. John Tindall is the clinic’s manager. They have approximately 1,600 patients and see 70 - 100 patients
per day.
In London, John and
Matt are setting up medical students with children, who are being treated with
herbs, and monitoring their progression.
They are trying to get funding to set up clinical trials that will look
at integrated approaches. They believe that HCV-infected people taking Chinese
medicine can improve at the same rate as those in drug treatment, but with no
side effects.
The Gateway Clinic
is also starting a clinical trial that will look at ways of coping with the
side effects of the combination therapy.
The US government has funded a clinical trial in San Francisco for a
group of prostitutes who are Hep C positive.
They are looking at four groups---one that is being treated with
interferon, another with Chinese herbs, another with herbs, diet, Qi Gong, and
lastly, a group that is not undergoing treatment.
John has made up 4
different Chinese herbal combinations (2nd generation) based on a
patient’s current symptoms. John and Matt are trying to set up a clinic and
pharmacy here in Vancouver. They want
to the keep the cost down for the patients.
John has found that patients can accurately choose their own Chinese
combinations. It is therefore not
necessary for the patients to see a practitioner unless they so desire. But the herbal companies in the US will not
dispense the herbs directly to the patients.
They require a practitioner’s prescription. Because the practitioner's fee adds an unnecessary cost to the
patient, John is trying to find a doctor who will provide the information on
the 4 combinations and the prescription without charging the patients.
Both John and Matt are working closely with
Herb Moeller to meet their goals. If you can help, please call Herb at
241-7766.
John Tindall can be
reached in London at 01-81-690-9145.
This number is both a fax and a phone.
If you fax him, he'll get back to you as soon as possible. The internet
address for Matt's book is www.hephandbook.com and John's internet address is www.yuancentre.com
Matt
has just finished the second edition of the Hep C Handbook. He would like to offer this book to support
groups. You could offer the books at
cost to your support group members at a reduction of 55%. Matt's publisher’s
number is (510) 559-8277. You must
order one case of books (20 books) and the cost is $275 US. You can also order a personal copy of the
book from 1(800) 337-2605. Darlene and I have ordered a case of books. I’ll let you know when they are in.
Darlene Morrow
http://www.medscape.com/SMA/SMJ/1999/v92.n07/smj9207.09.bhog/smj9207.09.bhog-01.html
Diclofenac-Associated Hepatitis
Anil
Bhogaraju, MD, et al., Department of Internal Medicine, University of Illinois
College of Medicine at Urbana-Champaign.
Abstract: This patient, who had a history of osteoarthritis, had
severe hepatitis 5 weeks after being started on diclofenac for increasing pain
in the joints. A week before the onset of hepatitis, the patient complained of
upper gastrointestinal symptoms and was treated for gastritis. Seven days
later, she had full-blown, severe hepatitis. Diclofenac was immediately
stopped, leading to a complete restoration of liver functions over the course
of the next few months. We highlight the importance of having a high index of
suspicion for hepatic side effects of diclofenac and emphasize the need for
increased awareness of this rare but potentially serious problem. We also review
relevant literature regarding incidence and management.
[South Med J 92(7):711-713,
1999. © 1999 Southern Medical Association]
Michael
Steele of Kitchener ON, formerly of Alberta and a liver transplant recipient passed
away August 7, 1999. Apparently the virus came back with a vengence and doctors
were unable to help him this time. He leaves his wife Sheila and a son and
daughter. Two days later, Sheila's father passed away suddenly as a result of
an aneurysm. A double funeral was held on August 12. I'm sure Sheila and the
family would appreciate prayers and condolences in this difficult time. If
anyone wishes to send condolences, they can send them to me and I will give
them to the family.
Send
them c/o Carolyn Caveney, 8-1200 Courtland Ave. E., Kitchener, ON N2C 1K7.
DISCLAIMER: The hepc.bull
cannot endorse any physician,
product or treatment. Any guests invited to our groups to speak, do so to add
to our information only. What they say should not necessarily be considered
medical advice, unless they are medical doctors. The information you receive
may help you make an informed decision. Please consult with your health
practitioner before considering any therapy or therapy protocol. The opinions
expressed in this newsletter are not necessarily those of the editors, of
HeCSC, HepC BC or of any other group.
SUBMISSIONS:
The deadline for any contributions to the hepc.bull is the 15th of each month.
Please contact: Joan King-Diemecke at (250) 388-4311, jking@pacificcoast.net,
Darlene Morrow at 1203 Plateau Drive, N. Vancouver, BC, V7P 2J3, hepcbc@home.com
or C.D. Mazoff at squeeky@pacificcoast.net
The editors reserve the right to edit and
cut articles in the interest of space.
ADVERTISING: The deadline for placing advertisements in
the hepc.bull
is the 12th of each month. Rates are as follows:
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EDITORS: TEL: (250) 388-4311
Joan King-Diemecke jking@pacificcoast.net
Darlene
Morrow hepcbc@home.com http://www.geocities.com/HotSprings/5670
C.D.
Mazoff squeeky@pacificcoast.net
VICTORIA
HeCSC OFFICE: TEL: (250) 388-4311
http://www.pacificcoast.net/~hepcvic/
hepcan@egroups.com
Castlegar/Grand Forks/Trail Contact: Robin, 365-6137
Comox Valley Liver Disease Support
Group Meetings:
Third Tuesday of each month, 6-8 PM, St. Georges United Church on Fitzgerald. .
NEXT MEETING: October 19th. Contact: Ingrid or Nicky, 335-9167 or Jeanne Russell nickyrussell@sprint.ca
Cowichan Valley Hepatitis C
Support Contact:
Debbie, 715-1307, mygirl@olink.net, or Leah, 748-3432, r._attig@bc.sympatico.ca
Downtown Eastside Hep C Support Group Meetings: Wednesdays 7:30-9:30
PM, Carnegie Center, 401 Main St., Vancouver. Contact Carolyn: momma@vcn.bc.ca
Enderby HepCURE Meetings: Last Sunday of each
month, 2-4 PM, for High Tea, The Raven Gallery, 701 George St. NEXT MEETING:
October 31st. Contact: Marjorie, 558-7488. www.junction.net/hepcure/index.html
Kelowna HeCSC Meetings: Last Saturday of each
month, 1-3 PM, Rose Avenue Education Room in Kelowna General Hospital. NEXT
MEETING: October 30th. Contact: Michael, 860-8178 or eriseley@bcinternet.com
Kootenay Boundary Meetings: Second and fourth
Tuesday of each month, 7 PM, 1159 Pine Ave. upstairs from Lordco auto parts. NEXT
MEETINGS: October 12th and
26th. Contact: Brian, 368-1141, k9@direct.ca or Pat, 364-1555
Mid Island Hepatitis C Society Meetings: Second Thursday of
each month, 7 PM, Health Unit-Central Vancouver Island, 1665 Grant St.,
Nanaimo. NEXT MEETING: October 14th. Contact: Susan, 245-7654,
hepc@nanaimo.ark.com, or Rose, 714-1937.
New Westminster Support Group Meetings: Second Monday of each
month, 7:00-8:30 PM, First Nation's Urban Community Society, Suite 301-668
Carnarvon Street, New Westminster. NEXT MEETING: October 11th.
Contact Dianne Morrissettie, 525-3790.
Parksville/Qualicum 1-291 East Island Hwy, Parksville. Open
daily from 9AM to 4 PM, M-F. Contact: (250) 248-5551. dbamford@island.net
Penticton HeCSC Meetings: Second Wednesday of
each month, 7-9 PM, Penticton Health Unit, Board rooms. NEXT MEETING: October
13th. Contact: Leslie, 490-9054, bchepc@bc.sympatico.ca
Prince George Hep C Support
Group Next Meeting: October 12th, 7 PM, PG
Hospital, Room 102 Speaker: Darlene Morrow of HepC BC. Contact
Ilse: ikuepper@pgrhosp.hnet.bc.ca
Prince Rupert Contact: April, 627-7083.
Princeton Meetings: Second Saturday of each Month, 2
PM, Health Unit, 47 Harold St. NEXT MEETING: October 9th. Contact:
Brad, 295-6510, citizenk@nethop.net
Quesnel Contact: Elaine, 992-3640.
Sunshine Coast NEXT MEETING: See page 3.
Contact: Kathy, 886-3211. kathy_rietze@uniserve.com
Vancouver CLF Meetings: Second Thursday of each month,
7:30 PM, Nurses’ Residence of VGH (12th and Heather). Signs will
direct you. NEXT MEETING: October 14th. (Contact: the
CLF, 681-4588,Herb, 241-7766, HMoeller@compuserve.com
Vancouver Support Group FIRST MEETING: September 29, 10:30-12:30, CDC Bldg., Building 655 West 12th
(12th and Ash, next to the Cambie Street City Square Mall). There will be
someone outside the building to direct. Contact: Darlene N., 685-3813,
djnicol@ibm.net, or Darlene M., 987-7378, hepcbc@home.com
Vernon HepCURE Meetings: 1st Tuesday
12-2 PM and 3rd Tuesday of each month, 6-8 PM, the People Place,
3402-27th Ave. NEXT MEETINGS: October 5th and October 19th.
Contact: Marjorie, 558-7488. www.junction.net/hepcure/index.html
Vernon HEPLIFE Meetings: 2nd and 4th
Wednesday of each month, 10 AM-1 PM, The People Place, 3402-27th
Ave. NEXT MEETINGS: October 13th and October 27th.
Contact: Sharon, 542-3092. sggrant@attcanada.net
Victoria HeCSC Meetings: Last Wednesday of each month, 1-3
PM and at 7-9 PM, Steve Orcherton’s Office, 2736 Quadra (at Hillside) NEXT MEETING: October 27th.
Contact: 388-4311. hepcvic@pacificcoast.net
White Rock Support Group: Meeting Room #2, Peace Arch
Hospital. Contact Lisa Peterson at 538-8704.
Victoria Chapter HeCSC acknowledges
the personal donations, donations in kind and memorial donations received to
date, and the following for discounts, donations of services, or equipment: JJ
Camp, David Klein, Bruce Lemer, David Anderson, Steve Orcherton, Barbara
McVagh, United Commercial Travelers, PECSF, CFAX 1070 Radio, Pacific Coast Net,
Island Internet, Inc., Microsoft of Canada, Jim Pattison Group, Paradon
Computers, and CompuSmart. We also wish to acknowledge an anonymous agency
which has generously supplied us with government surplus computer equipment,
London Life, Uncle Dave and some wonderful anonymous donors. Additional thanks to: Mount Royal Bagels, Howie Siegal, The
Pasta Place, & Fernwood Home Services.
A big round of applause and many
thanks to Victoria’s Pierre Fontaine for a generous donation and
some coffee supplies for our office.
Reminder: Any change of address, phone number or
postal code, please let your phone contact (in Victoria) or your chapter
secretary know ASAP
HeCSC Victoria Tel. (250) 388-4311
hepcvic@pacificcoast.net
REPRINTS
Past articles are available at a
low cost. For a list of articles and prices, write to the hepc.bull, via
Darlene Morrow at 1203 Plateau Drive,
N. Vancouver, BC, V7P 2J3, hepcbc@home.com