by Joan King-Diemecke
So you need another reason to lose those extra pounds, do you? Well, I may have just the information to motivate you.
An article appeared in last month’s issue of Hepatology, called "Fibrosis in Chronic Hepatitis C Correlates Significantly With Body Mass Index and Steatosis," by Luke F. Hourigan et al., of the University of Queensland in Australia.
The article says that steatosis, or fatty liver, is common among those of us battling "The Dragon," but that its role in the progression of the disease has not been decided. The authors studied 148 untreated Hep C sufferers, measured their body mass, checked them for diabetes, asked them about their use of alcohol, measured the iron in their livers, and did PCR tests to determine their viral load. Sixty one percent of the patients had fatty livers. The investigators, taking into account those factors, found "a highly significant relationship…between steatosis and body mass index." Fibrosis seemed to correlate to the age of the patients, as well as to fatty deposits. The authors concluded, "These findings suggest that increasing body mass index has a role in the pathogenesis of steatosis in chronic hepatitis C and that steatosis may contribute to fibrosis."
In another article in the same issue, Arthur J. McCullough, M.D. agrees with the findings, and states, "Although sustained weight loss may be difficult to achieve, weight loss decreases both hepatic steatosis and visceral fat and, therefore, should be vigorously pursued. It should be emphasised that rapid weight loss may actually worsen liver injury, so gradual weight loss should be the goal."
Hepatology, April 1999, p. 1215-1219, Vol. 29, No. 4
Or
Why did the Chicken Cross the Road?
(to catch another virus)
Several people have written me privately wanting to know my opinion about MTH. So rather than do this over and over individually, I am hoping this short article will suffice.
Recently there has been quite a stir over MTH-68/b, a "vaccine" made from a chicken virus in Hungary, by a Dr. Csatary. This "vaccine" is supposed to work against cancers, and Hep B & C. I am very concerned about people getting their hopes up over nothing with this stuff.
This story also made the rounds last year about this same time. After a while it was labeled a hoax. While I'm not convinced it is/was a complete hoax, it may turn out to be... or maybe not. It’s just much too early to tell.
What I CAN tell is that the studies and reports are extremely misleading. All this has been done outside the USA, in Hungary. Not even early trials have been approved or scheduled in the USA.
My primary concern with what I’ve seen published so far is the very poor use of key terms, such as "remission," "relapse" and so on, WITHOUT any definition of terms. This is both misleading and dangerous.
Also, and perhaps even more misleading, is that the study clearly talks about ACUTE hepatitis B & C, but the reports on the study just say "hepatitis C," implying there is no difference! There is a HUGE difference between "acute" and "chronic" Hep C, and the effectiveness of any therapy for these disease states. Chronic hepatitis is much harder to treat, while about 15-20% of acute cases resolve spontaneously with no treatment at all, and never progress to "chronic."
How many persons who have hepatitis C were ever diagnosed as "ACUTE"? It's uncommon to see it happen under circumstances of a reliable diagnosis. It is often found along with hep B, which is much more severe in its acute stages.
Additionally, CHRONIC hepatitis C varies widely in its response to treatment—age, viral genotype, length of infection, viral load, degree of fibrosis or cirrhosis and other complications. This "paper" deals with none of these factors, and lacks credible controls of many variables.
Finally, although I could point out several other concerns, this work has yet to be accorded any credibility in the USA or the more advanced European nations. Csatary’s organization is on a fishing expedition for money. They are looking for funding, grants, research money, etc. I hope they get it if it proves worthy.
Even if the work should prove to be something worthy of pursuit, it would be many years for it to gain even phase 1 or 2 trial status, not to mention the critical phase 3 studies which must be conducted in the USA.
What this appears to be is much ado about nothing. If this chicken-virus anti-viral vaccine is going to have any impact for us, it will be at least 5 or 10 years down the road, that is, unless one wishes to travel to Hungary and ask to be put in a study.
I'd be very cautious about getting hopes too high or rushing out to invest in this sketchy and questionable "research."
Sorry, if I stepped on anyone’s toes, but I have to call them as I see them, and that’s the view from here. J
Jere Hough, S. Florida jlhough@prodigy.net
Mr. Hough is an HCV-disabled, retired
teacher and businessman, and is an HCV patient advocate and
activist. His wife Polly teaches critical care nurses.
AT-HOME HEP C TEST by Joan King-Diemecke
The US government has approved a home test for hepatitis C. There are, as we know, a few drugs to treat hepatitis C, so doctors have begun to campaign for all people at risk to be tested. The Food and Drug Administration approved Home Access Health Inc.'s "Hepatitis C Check" in May, so people may choose to have an anonymous, at-home test, rather than go to a clinic. A special lancet is used to prick a finger. A few drops of blood are placed on special paper and mailed to Home Access Health's laboratories. The lab returns the results within four to ten business days, and the company offers counseling and referrals to physicians. The test can tell whether or not a person has ever been infected with hepatitis C, but it can’t tell if the virus is actually present or active. About 15% of people who are infected can spontaneously clear the virus. People who test positive with the at-home tests should see a doctor to find out if the virus is actually present. The at-home test will be available in the US in June, and is expected to cost under $70, Home Access said. It doesn’t require a prescription.
We are enclosing pamphlets about organ donation, in hopes that your family members will consider filling them out. The rules for signing up have changed, and the sticker on the back of peoples’ drivers’ licences is no longer sufficient. Please take the time to give the pamphlet to someone you love, and order more if you can. By doing so, you may save lives—perhaps yours or mine.
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THANKS!!
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.
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
Hepatitis C An Alternative Look
Hepatitis C Society of Canada 5th Annual Conference
Saturday, May 29, 1999, 830 AM-600 PM
Carlton Room, Days Inn Toronto Downtown
30 Carlton St., Toronto
Registration fee Members $20.00
Non-members $35.00
(includes lunch)
Contact 1-800-652-4372 or (416) 979-5855
Castlegar/Grand Forks/Trail Contact Robin, 365-6137
Chilliwack Contact David, 792-3467
Comox Valley Liver Disease Support Group Meetings Third Tuesday of each month, 7 PM, downstairs, Island Health Unit building. NEXT MEETING June 15th. Contact Ingrid or Nicky, 335-1711 or Jeanne Russell ebus96@island.net
Cowichan Valley Hepatitis C Support Services is in desperate need of a meeting place. Contact Debbie, 748-5450, dduncan@olink.net, or Leah, 748-3432, r._attig@bc.sympatico.ca
Enderby HepCURE Meetings Last Sunday of each month 2-4 PM, for High Tea, The Raven Gallery, 701 George St. NEXT MEETING June 27th. 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 June 26th. Contact Michael, 860-8178 or eriseley@bcinternet.com
Kootenay Boundary Meetings NEXT MEETING May 27th, 7 PM, 1159 Pine Ave. Trail, above the Lordco Auto Parts store. Contact Pat, 364-1555, or Brian, 368-1141.
Nanaimo HeCSC Meetings Second Thursday of each month, 7 PM, Health Unit-Central Vancouver Island, 1665 Grant St. NEXT MEETING June 10th. Contact Helen, 245-8759.
New Westminster Support Group Meetings Second Monday of each month, 700-830 PM, First Nation's Urban Community Society, Suite 301-668 Carnarvon Street, New Westminster. NEXT MEETING June 14th. 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 June 9th. Contact Leslie, 490-9054, bchepc@bc.sympatico.ca
Prince Rupert Contact April, 627-7083.
Princeton Meetings Second Saturday of each Month, 2 PM, Health Unit, 47 Harold St. NEXT MEETING June 12th. Contact Brad, 295-6510.
Quesnel Contact Elaine, 992-3640.
Richmond Meetings Fourth Tuesday of each month, 7 to 9 PM, Westminster Health Unit, 7000 Westminster Hwy, Main Floor, Room 3. NEXT MEETING June 22nd. Contact Carmel at Richmond Health Unit, 279-4069.
Sunshine Coast Meetings First Thursday of each month, 730 PM, Coast Garibaldi Health Unit in Gibsons. NEXT MEETING June 3rd. Contact Karen, 885-6413. karen_felske@sunshine.net
Vancouver CLF Meetings Second Thursday of each month, 730 PM, Nurses’ Residence of VGH (12th and Heather). Signs will direct you. NEXT MEETING June 10th. Contact the CLF, 681-4588 or Darlene N, 685-3813 or email djnicol@ibm.net or hepcbc@canada.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 June 1st and June 15th. 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 June 9th and June 23rd. 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 June 30th. Contact 388-4311. hepcvic@pacificcoast.net
White Rock Support Group Meeting Room #2, Peace Arch Hospital. Contact Lisa Peterson at 538-8704.
HOW TO REACH US
EDITORS TEL (250) 388-4311
Joan King-Diemecke joan_king@bc.sympatico.ca
Darlene Morrow hepcbc@home.com
http//www.geocities.com/HotSprings/5670
C.D. Mazoff squeeky@pacificcoast.net
VICTORIA HeCSC OFFICE TEL (250) 388-4311
hepcvic@pacificcoast.net
http//www.pacificcoast.net/~hepcvic/hepcvic~1.htm
subscribe-hepcan@egroups .com
I do wonder what people in government are up to—this includes health ministries, both federal and provincial, and those in their employ, the doctors and nurses who are supposed to protect the public interest.
The general impression out there seems to be that once compensation is paid out, Hep C is a closed deal. According to the CBS, the blood supply has been clean since 1990, although I have met many post-1990 transfused victims; according to Dr. Heathcote at a recent conference, which Joan, Darlene and I attended, there is a cure—although when I asked her to send some of these cured people to our meetings so we could meet them, she balked, didn’t explain satisfactorily her definition of a cure, and changed the subject; according to many local GP’s, the disease is only a minor affliction, and anyone who gets it now or in the future is a drug user—and who can believe them? So most GP’s aren’t too keen about helping you fill out disability forms. In short, the general attitude toward those with hepatitis C seems to be, "Quit wasting my time. I have better things to do."
Well, I for one put all of this down to a rare disease called "golf ball in the head-itis," for how else can I explain this inability to comprehend the latest studies in hepatology.
Here are two from the American Journal of Gastroenterology 1999 May;94(5). One, "A case-control study of risk factors for sporadic hepatitis C virus infection in the southwestern United States" (1341-6), concludes that "A history of sexually transmitted disease, heavy alcohol intake, the presence of tattoos, and a history of needlestick exposure were identified as risk factors for sporadic hepatitis C in this case-control study. If we include all patients with a history of blood transfusion or injection drug use, only 2% of the total 477 HCV patients had no identified risk factors."
The second study, "Musculoskeletal pain and fatigue are associated with chronic hepatitis C a report of 239 hepatology clinic patients" (1355-60), concludes that "Musculoskeletal pain and fatigue are frequent in hepatology clinic attendees, particularly those with hepatitis C and are unrelated to severity of liver disease, route of infection, or interferon therapy."
Couple these studies with the recent Quality of Life Survey by Drs Hogg, Schechter et al., and you would think that there would be a massive initiative on the epidemiological front, but there isn’t. Mr. Rock’s promise of "Care not Cash" has not yet materialised, and more and more Canadians are suffering financial hardship as a result of this progressively disabling disease and our governments’ uncaring response.
While massive amounts of monies are being injected into corporate bailouts and foreign aid, little to none is redirected into research for HCV. Most cities in Canada are without proper liver clinics, and there are no national or provincial strategies in place for dealing with the growing hepatitis C crisis.
Thus, while studies such as those cited above point toward the need for community caution, they are just the tip of the iceberg. Other obvious risk factors are still not being investigated—visits to the dentist, the risk of a haircut, and who knows what else. Of course to question these other areas for contagion would probably alienate most of the golf partners—and, frankly, who wants to play alone?
Life is such a beach!