Hepc.bull September 98a
By Joan King-Diemecke
CAMBRIDGE, Mass., July 27 /PRNewswire/
-- "Pentose Pharmaceuticals, Inc. has received a Phase I Small Business Innovation Research (SBIR) grant from the National Heart, Lung, and Blood Institute (NHLBI) to support use of the Company's Inactine ™ technology to eliminate viruses in blood samples collected in evacuated tubes for routine laboratory analysis.""In laboratory studies to date, our Inactine™ compounds have effectively inactivated all major classes of viruses without modifying blood components or chemistries critical for diagnostic analysis."
These compounds are being developed so that laboratories may "spike" the contents of the test tubes they use to collect blood samples for lab tests. Needle stick injuries are a risk for thousands of healthcare workers, in spite of the use of gloves. There is no vaccine for hepatitis C. There is also no method to directly inactivate any virus contained in lab test tubes. Inactine™ selectively binds and irreversible changes nucleic acids so that the virus cannot replicate, and it has no effect on the blood cells or chemical analysis. It would be added to empty tubes when they are manufactured. This compound would not kill any virus, but would prevent it from multiplying. The company has presented data indicating that the product seems to work with viruses such as HIV, HAV, HCV, and CMV. It does not affect enzyme measurements, cell counts, coagulation times, or determinations of electrolyte and other blood test measurements.
This discovery would seem to indicate that the technology could eventually be used to inactivate viruses in blood to be transfused.
SOURCE: Pentose Pharmaceuticals, Inc.
http://www.fkpi.com/Release_Comp/Pentose.html
Finding funds among biggest challenges of liver research
From Canada's National Newspaper, (c) 1997 The Globe and Mail
THE HEPATITIS C virus could hardly have found a better place to do its destructive work, far from the attention of research funding bodies.
"Liver research," says Dr. Sam Lee of the University of Calgary, "has always been abysmally funded."
It's a subject constantly high on the agenda for Lee and his colleagues in the Canadian Association for the Study of the Liver, a multidisciplinary group of doctors, scientists and health-care providers whose expertise focuses on the liver. Dr. Lee, whose special interest is cardiovascular disturbances in liver disease, is the current CASL vice-president.
CASL's mandate is to provide national leadership in all aspects of research, teaching and patient care as it pertains to the liver. Although liver disease is the fourth leading cause of death in Canada, and an estimated 300,000 or more Canadians are infected with the hepatitis C virus specifically, it's an uphill battle generating research support.
"There is some research [on hepatitis C], a few pockets of activity, but there isn't as much as we would like," Dr. Lee remarks. "Governments don't want to invest money in very basic scientific research. It's always about that process of going from basic bench research to something that generates money in the market.
"The government keeps saying, `Yes, yes, we're aware of that problem,' but they don't seem to have gotten the message."
There have been painful lines of controversy set in Canada in recent years with comparing the research emphasis among different diseases. While no one would like to see less research focus on the virus that leads to AIDS, for example, there is frustration in the research community that while the federal government has earmarked $204.5-million over the next five years specifically as part of an AIDS strategy, there appears no research strategy whatsoever when it comes to hepatitis C.
"HIV is a special kind of problem, and perhaps it did need special attention because it is so lethal and so new," allows Dr. Lee, who nonetheless would like to see more attention to viral hepatitis.
The numbers would certainly seem to warrant it. Assuming conservatively that 15 per cent of those infected with the hepatitis C virus develop end-stage liver disease, then 1,800 of the anticipated 3,000 deaths from Canada's tainted blood problem of the eighties will be due to hepatitis C, just to take that one scenario. Meanwhile, 300,000 or more Canadians, and closer to 450,000 in recent Health Canada estimates, are carrying the hepatitis C virus.
The Canadian Hemophilia Society, which has fought long and hard on behalf of the many HIV-infected patients within its membership, remarks indignantly that "we have not one identified nickel of dedicated research money coming [for the study of hepatitis C] from the federal government," in the words of CHS president Durhane Wong-Rieger in Montreal.
Even the Canadian Liver Foundation, whose primary mandate has been to raise funds to support research in hepatology, is openly frustrated.
"We are strapped for funds for research," says CLF president Mortimer Bistrisky. "We cannot do the projects that require the big bucks, so to speak. Hepatitis C is an equally large concern as HIV, but funding for hepatitis C research is practically non-existent."
Some of the obstacles in generating research funds and even public awareness when it comes to hepatitis C and other liver disease:
Liver disease is reflexively thought by many people to mean cirrhosis caused by alcoholism. In fact, there are over 100 liver diseases and over 40 causes of cirrhosis, many of which have nothing to do with alcohol including hepatitis C (alcohol will worsen any cirrhotic condition, of course).
Along with associations of alcohol abuse, illicit intravenous drug use as a leading cause of transmission of hepatitis C in North America today further gives the disease an image of disrepute
By the same token, the sub-specialty of hepatology has not attracted many medical professionals. While the specialists Canada has produced are of the first rank and have distinguished themselves internationally, there are simply very few of them—perhaps 30 dedicated hepatologists today, according to Bistrisky.
The liver is a very large organ and typically develops disease conditions slowly, up to three decades in the case of end-stage liver disease caused by hepatitis C. This undermines a sense of urgency in dealing with it.
Breast cancer and AIDS, to take notable recent examples of successful campaigns for research funding, have well-organized constituent groups to do the lobbying, another sharp contrast with liver disease.
While basic research into the cellular mechanisms pertaining to the course of hepatitis C is lacking, research on the treatment front is rather more robust.
"There's a fair amount of that and most of it is driven by the pharmaceutical companies," observes Dr. Lee, who does get a certain amount of money per patient from such firms which he can use in part for laboratory costs.
With an estimated 150 million people in the world infected with the hepatitis C virus, the potential market is significant, and while "interferon is still the mainstay of treatment, it's not that effective," observes Dr. Lee. "Three-quarters [of patients who take the treatment] don't have a good result."
One focus of current exploration is to combine interferon with ribavarin, an anti-viral drug that has been used for other infections but is not yet specifically approved for use in Canada for the treatment of chronic hepatitis C.
by Darlene Morrow, B.Sc.
A special thanks to Cindy for pointing me in the direction of continuing to research this herb for possible contraindications.
The recommended dosage for Kava Kava is 45 to 70 mg of kavalactones three times a day. For sedative effects, a dose providing 180-210 mg can be taken one hour before retiring.
High doses of Kava Kava, or use over a prolonged period of time (a few months to a year), can cause side effects. The most common problem is a condition of the skin. The skin can become dry and scaly especially the palm, soles of the feet, forearms, the back and shins. Withdrawal of the kava leads to a complete reversal of these symptoms.
Doses over 310g per week over prolonged periods can also cause low levels of albumin, protein, urea, and bilirubin, the presence of blood in the urine, increased red blood cell volume, decreased platelets and lymphocyte counts, and shortness of breath.
Given all of these possible problems— it is NOT RECOMMENDED for HCV patients to use kava kava.
D
ear friends:
It is with great sadness that I must tell you that Jim Thompson (aged 53), our former office manager, passed away two days ago (August 16th). Jim had cirrhosis/end-stage liver disease and suffered a bleed. He was being considered for a transplant, I believe, but this was too late.
Jim was really loved by us all at the HeCSC Victoria office. He was efficient, kind, and inventive. He could always be counted on and made work easier for all of us.
We miss him very much.
Dr. C.D. Mazoff (Squeeky)
COMING UP:
Castlegar/Grand Forks/Trail
Contact: Robin 365-6137.
Cowichan Valley Hepatitis C Support Services. Meetings: 1st Thursday 7-9 PM. 3rd Tuesday 10-12:00 noon,. 464 TCH. Duncan. NEXT MEETINGS: Sept. 3rd. And 25th. Contact: Debbie 748-5450 or Leah 748-3432. cvhepc@hotmail.com
Enderby HepCURE Meetings: Last Sunday of each month 2-4 PM, for High Tea, The Raven Gallery, 701 George St. NEXT MEETING: Sept. 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: Sept. 26th. Contact: Michael 860-8178 or
eriseley@bcinternet.com
Nanaimo HeCSC
Meetings: Second Thursday of each month, 7 PM, Health Unit—Central Vancouver Island, 1665 Grant St. NEXT MEETING: Sept. 10th. Contact: Helen 235-8759.
Parksville/Qualicum 305-335 Hirst St West,
Parksville. Open daily from 9AM to 4 PM, M-F. Contact: (250)248-5551. dbamford@island.net
Penticton HeCSC
Meetings: Third Thursday of each month, 7-9 PM, Penticton Health Unit, Board rooms. NEXT MEETING: Sept. 17th. Contact: Leslie 490-9054. bchepc@bc.sympatico.ca
Richmond Support Group: Meetings: Fourth Tuesday of each month from 7 to 9 P.M. in the Health Unit, 3rd floor, room 3A. NEXT MEETING: Sept. 22nd. Contact: Guy 244-1704. guy@fatherswithoutchildren.com or Carmel at Richmond Health Unit, 279-4069.
Sunshine Coast Support Group Meetings: First Thursday of each month, 7:30 PM, Coast Garibaldi Health Unit in Gibsons. NEXT MEETING: Sept. 3rd. Contact: Karen 885-6413. karen_felske@sunshine.net
Vancouver CLF Support Group Meetings: Second Thursday of each month, 7:30 PM, Nurses’ Residence of VGH (12th and Heather). Signs will direct you. NEXT MEETING: Sept. 10th. Contact: the CLF 681-4588 or Herb 241-7766.
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: Sept. 1st and 15th. Contact: Marjorie 558-7488. www.junction.net/hepcure/index.html
Victoria HeCSC Meetings: Last Wednesday of each month 1-3 PM, and again at 7-9 PM, St. John the Divine Church Lounge, 1611 Quadra St. (Entrance through the rear, marked Annex) NEXT MEETING: Sept. 30th Contact: 388-4311. hepcvic@pacificcoast.net
EDITORS: TEL: (250) 388-4311
Joan King-Diemecke Darlene Morrow HepC BC
VICTORIA HeCSC OFFICE TEL: (250) 388-4311 Web
Dear friends:
As you have by now gathered, very little is being done on our behalf by the Federal government, both with respect to compensation and research for a cure (see "Finding Funds" on p.1). As you also know, we are trying our best to find knew ways to encourage the government and pharmaceutical companies to act on our behalf, and, to this end, we have established links with the HIV-AIDS community and several of their research organisations, most recently through the formation of the Canadian Hepatitis C Clinical Trials Research Group (HepCTRG).
To reflect this change in emphasis, we have designed a new more comprehensive database that will enable us to have more useable information. Numbers are one thing; but numbers that say something are much more effective. You are not obligated to share this information with us; but if you do, you have our strictest assurance that the information will remain strictly confidential. We hope to be able to use these more informative statistics to pressure the government into doing something for us. We want to remind them that we are ill, how we are ill, what we have tried, and so forth..
So, in order for us to continue to help you, we are asking you to help us by providing the following important information. Please fill in the form on the right and mail it back to us as soon as you can; or if you would prefer to maintain the integrity of your hepc.bull, just copy the information to a piece of paper and mail that into us instead.
The list of physicians and dentists will enable us to refer others, since many dentists do not take patients with hepatitis C, and some of our members do not know the names of physicians or specialists in their locality. Please rate your doctors—i.e., good, bad, and so forth.
Living with Hepatitis: A Survivors Guide
A special thanks to Dr. Anderson who is offering this book at the reduced cost of $20. This is a good resource book written for the general layperson. For more information please call (604) 876-5122.
HeCSC Victoria
A librarian is still needed to keep track of overdue materials and catalogue new items contributed to our collection. The work could probably be done during a 1/2 day in the office.
Refreshments
—Trish has taken over refreshments for the evening meetings. We still need someone to purchase (with HeCSC funds) snacks and bring them to afternoon meetings, as well as prepare tea in the kitchen at St. John’s.
Minutes
—Alvina is doing a great job taking minutes at the afternoon meetings, and at the steering committee meetings, but we don’t yet have a volunteer for the evening meetings.
We need a volunteer for the office. This entails answering the phone and perhaps data entry, thank you notes, etc.
Hi Everyone,
I am pleased to announce the arrival of HepCURE's new web page. You can view it at:
Marjorie
There has been a Hep A ALERT posted for the Coquitlam area. Anyone that has eaten at the Real Italian Deli in Coquitlam in the past month should contact their physicians immediately.
Hep A can form a superinfection with Hep C and be fatal. If you haven’t had your vaccine for Hep A—now would be a good time to do it.
The vaccine is provided free to people with HCV. Call your local Public Health Unit or see your family physician.
This column is a response to requests for a personal classified section in our news bulletin. Here is how it works:
To place an ad: Write it up! Max. 50 words. Deadline is the 15th of each month and the ad will run for two months. We'd like a $10 donation, if you can afford it. Send checks payable to HeCSC Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 1611 Quadra St., Victoria, BC V8W 2L5. Give us your name, tel. no., and address.
To respond to an ad: Place your written response in a separate, sealed envelope with nothing on it but the number from the top left corner of the ad to which you are responding. Put that envelope inside a second one, along with your check for a donation of $2, if you can afford it. Mail to the same address as above.
Disclaimer: The hepc.bull and/or HeCSC cannot be held responsible for any interaction between parties brought about by this column.
Ad. No. 8
I read Atwood and Updike. I listen to Christine Lavin and the Wallflowers. DWM, 40ish, semi-retired, financially sound. Mentally and physically sound, so far. I’m looking for someone kind, and intelligent that I can serenade and make gourmet meals for, talk to, and have fun with. Victoria area.
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