CANADIAN LIVER FOUNDATION: Update

1-(604) 681-4588 or 1-(800)-856-7266.

The Hepatitis B Awareness Campaign was launched during "Help Fight Liver Disease Month." This campaign will take CLF volunteers and the BC Lions into the schools and other venues to talk to youth about Hepatitis B immunization and Hep B prevention.

Volunteers are needed in Victoria to assist organizing the Living With Liver Disease program and other education events for summer/fall 1998.

The CLF Charity Golf Classic will be held at the Westwood Plateau Golf and Country Club in Vancouver on June 2, 1998. Registration is by phone or fax to 1-(604) 681-4588 or 1-(800)-856-7266.

Hep A Vaccines May Now Be Covered in Your Area

As of April 1, 1998 the BC Provincial government will pay for the Hep A vaccine. The vaccine consists of an initial shot followed by a booster later on. Both will be covered in areas where there have been Hep A outbreaks (from seafood restaurants), e.g., the Lower Mainland. This is a bit of grey area and I encourage everyone to call Public Health, who will be giving the vaccine.

The reason for the coverage is due to the fact that someone with Hep C contracted Hep A and died. What is called "a superinfection" occurred (both viruses together are much more deadly that either one on its own). The resulting fulminant hepatitis was fatal.

The bad news is that there will be no reimbursement to anyone who had his Hep A vaccine prior to April 1, 1998.

Darlene Morrow

Listserve Is Up

We are pleased to announce that the Hepcsc - Canadian Hepatitis Support and Information Mailing List is now in operation. This automatic mailing list is a great place to meet other Canadians with Hepatitis C and to get quick local support and useful information on just about anything you need to know about living with this disease.

To subscribe to the Hepcsc Hepatitis Support and Information email list, just address a message to:

CUPID'S CORNER

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: HeCSC cannot be held responsible for any interaction between parties brought about by this column.

Ad No. 6 SWM Age: 48.; HT: 5ft.11in. ; WT. 185lbs. ; BR eyes, NS/ND/No drugs. Loyal, trustworthy, honest, affectionate, attentive, caring, romantic, very big heart. Easy going. Enjoys: Candlelight dinners, walks, beach, MC riding, photography, travel and NASCAR. Ladies I would like to meet: Age 39-50 ; 5ft. 6in. ; 100-130lbs. Must have same interests and be willing to learn new things.

VOLUNTEERS NEEDED - VICTORIA CHAPTER: HELP!!!

• A Volunteer Co-ordinator is needed to match our volunteers with tasks to be done. This person ideally should be able to come into the office at least once a week to access our database, as well as to make phone calls from home to the volunteers.
  
• Librarian. This person should be able to come into the office at least once a week to go through the library materials and call people to remind them of overdue materials, as well as to catalog new material. Possession of a computer with MicroSoft Works is desirable, but not necessary.
  
• Two people to take minutes, one at the afternoon meetings, and another at the evening meetings.

If you are interested, please call 388-4311

DAVE'S COLUMN

We lost another member of our fraternity a couple of weeks ago. Once again, the scourge known as hepatitis C has claimed another life in its prime; a life cut short far too soon.

Although I had never met Marc Dubois, I had talked to him on the phone on several occasions. He was only 45 years old. There are too many of us dying too soon from this insidious disease and it's got to stop. My heart goes out to his family and all his friends. Goodbye for now, friend.

Many people ask me from time to time what the criteria or protocol is for liver transplantation. It seems that there is a misconception in the community about who gets a transplant and who doesn't. Let me assure you all that every person who walks through the doors of the B.C. Transplant Society is assessed on an individual basis. There are over 200 people a year being assessed for transplantation and only 30 or so actually receiving the operation. So someone with, say, Hep B and Hep C may or may not be eligible, but the decision is not based on that alone. In other words, there will be other factors involved, such as how successful the operation will be. Hep B positive patients not that long ago were ineligible for a transplant until anti-viral drugs and immuno-globulin entered the picture and greatly enhanced the success rate. The same criteria applies to those who have to take methadone for pain management. All those who are on methadone should know that the decision to transplant or not is based on something other than that. There is no reason to assume that because you have Hep B or are on methadone you can't have a transplant. The decision to put you on the transplant list or not applies to everybody across the board, no matter who you are or what you've done. This information was given to me by the clinical coordinator of liver transplants at B.C.T.S.

BC Launches Computerized Organ-Donor Registry

British Columbia has developed Canada's first computerized organ-donor registry. The new system, designed to address current problems surrounding consent and long waiting lists, is expected to increase organ and tissue donations significantly.

Previously, BC residents indicated their willingness to donate when renewing a driver's licence. However, because less than half of them informed their families, the BC Transplant Society estimates that 35% of organs that were potentially available were being lost. Conversely, when families were aware of the desire to donate, 96% of them agreed to proceed. Shortage problems are compounded because fewer than 1% of those who sign up eventually donate an organ because they must be declared brain-dead first.

With the new system, potential donors need only register once through a participating drugstore chain, their BC Care Card or a motor-vehicle licensing branch. As well, people can "specifically delineate an organ for transplantation," explains Bill Barrable, chief executive officer for the BC Transplant Society.

All BC intensive care units have confidential telephone and fax numbers linked to the registry, which allow them to check if a person has registered. A copy of the registration is faxed to the doctor; this can then be presented to the family as evidence of legal consent. The registration constitutes "an advance directive for a living will," says Barrable, so written consent from the family is not required. The procedure also allows donors to keep the information confidential if they do not wish to notify family members.

To educate health care professionals about the program, the British Columbia Medical Association has sent material to doctors and the Transplant Society has visited all intensive care units in the province.

The society hopes that 500 000 more people will register by 2000 and ease the province's problems in meeting the current annual need for about 350 organs and 900 corneas. About 25% of the people on waiting lists die before a donor organ is available. Today the average waiting time for a kidney transplant is 809 days. Kidney transplants are considered particularly cost-effective; they cost $20 000, plus $6000 yearly for antirejection drugs, while annual dialysis treatment can cost $50 000. Barrable says that since transplants became "mainstream and are no longer considered experimental, they have become a victim of their own success."

Funded by the Ministry of Health and the private sector, start-up costs for the registry will be $1 million, with annual costs of $71 000.

Heather Kent

SQUEEKY'S CORNER

To INF or Not to INF: Is There a Question?

Recently two of our mutual friends received very exciting and encouraging results after treatment with combination therapy with Interferon and Ribavirin. For both Joan and Darlene, the treatment was not easy (see "Adverse Events" on page 6); but despite very strong side effects, both these gals persisted and feel not only that it was worth it but that they would do it again. In both cases, PCR was undetectable; in one case, at 6 months, in the other, at the end of treatment. In Joan's case, this was temporary; however, a subsequent biopsy revealed that her liver damage had been substantially reversed. (See "Interferon and Ribavirin" on page 2 for discussion of PCR).

On the other hand, many people in the Hep C community have taken the decision to seek alternative forms of treatment and to eschew traditional approaches for a variety of reasons ranging from the X-files conspiracy theory of modern medicine to personal choices based simply on unmanageable side effects, or prohibitive costs. Some of these people have had varying success with Western herbal treatment (milk thistle, dandelion, artichoke, etc.) and others with Eastern approaches (Ayurvedic and Chinese medicine). As the discussion between Perry and Tim shows (See below) Chinese medicine can greatly improve "quality of life", and is often used as an adjunct to Interferon therapy to help manage side-effects. But as Tim cautions, because there is no necessary relation between symptomatology and progression of disease, and because there are little or no controls on alternative medicine, there is always the risk of doing more damage to oneself in an attempt to avoid the obvious damage that drugs such as Interferon can induce.

What then is one to do?

It is often when one is confused by such complicated choices that one can fall prey to the unscrupulous and even dangerous practices that continue to dupe many of the chronically ill. Warnings about quackery abound on the internet (and can now be found posted on our very own listserve), but even these are sometimes questionable and seem to belie hidden agendas of their own. For example, at the American Council on Science and Health site one can find postings about Chinese Medicine, Therapeutic Touch (see p. 5), and the like, which are clearly intended to discredit. No pretence of rapprochement is evident, and the language is clearly pejorative and patronising.

If I were to read only the articles published in the ACSH journal, I might think that Therapeutic Touch and Chinese Medicine were pure bunk! After all, the journal is official and its contributors often prestigious. But then, both you and I know from personal experience that many of these "unapproved" modalities have provided relief from pain and improved quality of life for both our friends and ourselves.

Like many with hepatitis C, I continue to take herbs and to investigate alternative approaches. But I am also scheduled to begin combination treatment with Interferon and Ribavirin shortly, in the hope that my liver damage can be reversed. Like Perry, I too feel that my "quality" of life has been greatly ameliorated through herbal and other non-standard treatments. But now I must seriously consider the "quantity" of life that lies before me.

C.D. Mazoff, Ph.D., Dip Th.