DISCLAIMER: Neither HeCSC nor the hepc.bull can 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 organisation.

Vancouver Sun

People with hepatitis C are eight times more likely to be extremely ill than those without the disease, says a study commissioned by the federal government to help it decide how to divvy up its controversial compensation package.

The study, conducted by the Centre for Health Evaluation and Outcomes Services (CHEOS) at St. Paul's Hospital, is the first one ever to measure the quality of life of hepatitis C sufferers.

It may seem self-evident that those with the disease could be sicker than those without, but one of the study's authors, Dr. Martin Schechter, said there is an erroneous perception in society that most people with hepatitis C don't suffer from any symptoms. "People will tell you it's only a small minority of people who ever suffered symptoms," said Schechter, professor of epidemiology at UBC. "What this study says to me is . . . a lot more people are more symptomatic than we think."

Last summer, when Ottawa was grappling with how to compensate tainted-blood victims, the study was commissioned to help federal and provincial governments decide how to distribute aid.

In December, following nine months of tense negotiations, a $1.1-billion compensation deal was struck between governments to assist the thousands of victims who were infected between 1986 and 1990. It allows for a range of settlements, from $10,000 to $225,000, depending on the level of sickness. About 800 BC residents would qualify for the deal. But the Hepatitis C Society, which represents some victims, has panned the compensation package as too small. The Red Cross has offered to sweeten the pot by another $60 million in exchange for victims forfeiting their right to sue, but that offer has also been criticised.

Class action lawsuits by some victims are still outstanding in BC, Ontario and Quebec.

Dr. Robert Hogg, who also worked on the study, said the federal government hasn't responded to it yet, noting it is part of on-going negotiations. He said the BC government and lawyers representing the victims were also involved in the year-long study, and said the doctors working on the report remained neutral to all sides.

The study was based on interviews with 241 people who received hepatitis C through blood transfusions between 1986 and 1990, and who are seeking compensation from the government. The results were compared to a control group of 222 people, who were hepatitis C negative despite having at least one blood transfusion during the same period.

The study, entitled "Through the Looking Glass," found:

- 68 per cent of those infected had a long-term disability or handicap, and 45 per cent of those said it was a result of hepatitis C. In the control group, 43 per cent reported a long-term disability or handicap.

- Seven per cent of those infected reported being in excellent or very good health, versus 38 per cent of the control group.

- Those infected reported more nausea, diarrhoea, fatigue, insomnia, memory loss, depression, migraines, and weight loss. The control group had more high blood pressure and heart disease.

- Those infected say they spent an average of $1,039 a month on medical-related services, versus $485 per month in the control group.

- 62 per cent of those infected don't work, and 64 per cent of those said it was because they're disabled or ill. There was 35 per cent unemployment in the control group, and 38 per cent of those attributed it to illness.

It also found those infected are more often men, younger, and live in lesser housing conditions than those in the control group. Schechter says the good news with hepatitis C is that it is almost never spread through the blood stream now. But the disease is raging through injection drug users.

Schechter warns the medical system in the future will be handling those who became infected through blood transfusions and the "burgeoning epidemic" among drug users. "It means lots of suffering and incredible burdens on the health-care system," he said.

He noted hepatitis is similar to where HIV was 10 years ago-there are only a few effective drugs to treat it. But he said there are indications that Hep C is curable, while HIV is not.

Here are some answers:

1.) Availability:

In Canada, genotyping has not been readily available to the public through the medicare system. In the USA, genotyping is more available but certainly not universally available. In Canada, genotyping is usually only done when a drug study is being done, e.g., consensus interferon etc.

2.) What Information is Gained from Genotyping?

Researchers have long recognised that patients will respond better to current therapies depending on their genotypes. However, other factors, such as viral load, the persons own genetics, co-infections, stage of disease and more, also determine the effectiveness of treatment.

Genotypes are geographically distributed-that is, they 'tend' to be different in different parts of the world. Sometimes you can guess when you became infected by knowing your genotype-e.g., you were travelling in South Africa and now you have genotype 5, rather then the predominant North American 1a and 1b.

Also, different risk groups 'tend' to have different genotypes. It has been noted that the majority of IV drug users have a different genotype (3a) from most of the blood transfused (1a & 1b).

3.) Response to Therapy According to Genotype:

Genotype 1's tend to not respond to treatment as readily as genotypes 2 & 3. The difference in response can be quite dramatic; for instance, one study on consensus interferon reported an 80% response rate among genotypes 2 & 3 and a 16 - 20% response rate among genotype 1.

However, remember that other factors, such as viral load and disease stage, play an important part in response to treatment.

4.) Should Patients have the Right to Know Their Genotype?

Yes-in my opinion, it is a very important part of the picture. The risks and side effects of current therapies definitely justify the cost of the patient being able to weigh out the "Risk-to-Benefit" ratio before embarking on treatment. For instance, my family has a history of diabetes; I have already been a gestational diabetic, with two pregnancies putting me in a 50% range for developing diabetes naturally. Interferon therapy carries with it a significant risk of triggering irreversible diabetes, even without the burden of a genetic predisposition. In weighing my treatment options I would want to know that I had a 50 - 80% chance of clearing the virus before deciding on treatment. Otherwise, if I ended up with diabetes and I still had HCV, then my quality of life would be further degraded with the additional probability of an even shorter life expectancy.

5.) What are the Downsides to Genotyping?

One downside is an additional 'one time' cost added to our Medicare system (estimated to be around $300-$350). However, the biggest downside is that eventually (if not already done by some medical insurers in the USA) government Medicare and private HMO's will use your genotype to deny you medication coverage based on the low response rates of certain genotypes. Now this is a very serious issue because 72% of North Americans are infected with a 'low' response genotype, i.e., types 1a & 1b (only a 16-20% response rate in some clinical trails). The real issue here is that all patients should have the undeniable right to choose for themselves the option to try to eradicate this virus from their bodies. But with government cutbacks in health care, it seems inevitable that being denied treatment based on genotype alone is a very real prospect.

6.) Stand Together Now Before it is Too Late-Plan Ahead!

British Columbia is rumoured to be instituting genotyping in the near future. We must stand together and make sure that genotyping is only used for our benefit and not our detriment. There have already been major cutbacks in coverage for interferon and ribavirin.

Let Us Unite to Protect Our Health!

Several doctors told the FDA scientific advisers that Rezulin helps many of their toughest diabetes patients, and the benefits outweigh the risk. They suggested that only perhaps 45 percent of Rezulin patients are getting the proper liver testing to detect problems in time to treat them.

The FDA called a highly unusual safety meeting because of the alarming finding that some patients who took all those precautions still died from severe liver toxicity that arose just weeks after they had passed a liver test.

Even Rezulin's harshest critics, however, don't expect the advisory group to take the drastic step of recommending that Rezulin be banned.

Muriel Colli passed away on March 29, 1999. She was one of our first members, and attended meetings faithfully. She was at our February 24^th meeting. She is survived by her son, daughter, grandchildren, and special friends. Muriel retired from Safeway after 28 years, and was a good friend to many. We will miss her..

Hello All:

I just wanted the group to know that we lost a friend this weekend, His name was Bob Ouchi, and he just got his pager for a transplant, but came back with an infection and passed away on Saturday. We will miss him.

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Castlegar/Grand Forks/Trail Contact: Robin, 365-6137.

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Nanaimo HeCSC Meetings: Second Thursday of each month, 7 PM, Health Unit-Central Vancouver Island, 1665 Grant St. NEXT MEETING: May 13th. Contact: Helen, 245-8759.

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: May 10th. Contact: Dianne Morrissettie, 525-3790.

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Our condolences go to M. R. for the loss of her beloved husband.

To: The Editors of the hepc.bull.

Your publication has become a soapbox for the Editors to attack the Society's National Office and the Board of Directors. In your April 1999 issue you failed to fulfil your responsibility and duty to provide balanced commentary on issues you find contentious.

I am certain that your readers would like to see your Editorial policy and the process you follow in presenting both sides of issues. Your commentary on the Society's unaudited 1998 Annual Statements was shameful.

We sent the statements to the Victoria Chapter to support their application for funding from the B.C. Employees Union. Without any request for explanation on their content you published your own interpretation. Annual Statements are always reviewed at the Annual General Meeting. This year it will take place at the end of May.

You published David Mazoff's letter containing seven demands to the Society but did not include the official response from the National office. It is inaccurate to say that National ignored the request.

I was shocked to see the lack of respect shown in the Emperor Cretin cartoon. We have built our excellent reputation by treating individuals with respect.

For a newsletter that is distributed using funds donated to our Society we expect that you follow suit. There is good content in your publication. Well done. With balanced commentary you can improve it further.

Squeeky's response: Our publication became political only recently when we began to listen to the voices of persons with Hep C from all over Canada, who felt frustrated and betrayed by the BOD. We have tried alternate channels for almost 2 years, but we feel that you have not listened to those you were elected to represent, so we made the decision to act responsibly and inform the community.

We sent registered letters in order to ensure you received our requests, since we rarely got a reply, let alone a prompt one. And as to the 7 demands, they were the response of our Steering Committee to your response to our registered letter. In my opinion your response was an excuse to continue as before with what we have now come to believe is an irresponsible and uncaring policy.

As far as the financial statements-they are indeed necessary for our funding application. Thank you. But if they are inaccurate (i.e., unaudited) I hope you have a good explanation for the government auditors. We obtained the financial statements to stop HeCSC National from claiming funds to which it is not entitled. We have been fighting this for almost 2 years, and the situation has never been settled until now, with the funding agency telling HQ clearly that this money is for BC use only. We feel that it is shameful that with an income of nearly $300 000, HQ should be asking struggling chapters for funds instead of the other way around. We have repeatedly asked for your input both in the form of words and money to this bulletin and other educational projects, and the usual answer has been NO ANSWER, or "Wait." In our opinion, you have apparently only complied with our requests when claiming or seeking some kudo for yourselves. I have often asked HQ to contribute a regular column because many members feel abandoned. If you look at your own regulations, and your own publication record, you have certainly been weak in this respect.

On behalf of all Canadians with HCV, I ask that you reconsider your policy, and listen to your members.

Joan's Response: Dear Jeremy, as you know, the Victoria Chapter publishes the hepc.bull, therefore, anything controversial is reviewed, often not only by the editors, but also by the steering committee, and published if the majority vote to do so. I don't like to do things without consulting the others, nor do the other editors. Our steering committee, elected by our members, represents our members. We have no editorial policy, to date. We discussed one with head office a while ago, at one of the times we were discussing the newsletter. Here is the policy that was proposed by head office. I don't know if it was ever approved, since we receive no minutes of meetings, and have no representation on the Board:

*HeCSC supports and encourages the publishing of chapter bulletins.

*HeCSC publishes only one official Society Newsletter.

*If the chapter bulletin is published under the name of HeCSC then each issue would include a disclaimer that HeCSC is not responsible for the accuracy of the articles.

*If the chapter subsidises the bulletin, then each issue would include a statement that HeCSC financially supports the costs of the bulletin.

*The National office of HeCSC will contribute a column to each issue of the bulletin.

*HeCSC will have no editorial responsibility for the content.

*The bulletin would not be used to air any differences or criticism of the Society, The National Office, the Board, any Chapter or individual. Communication on differences would be discussed and resolved through alternate channels of communication.

*Any member has the freedom to publish his or her own bulletin independently of HeCSC. However it will not purport to represent the chapters or the society. The National Office will not contribute a column and the chapter will not subsidise it.

As far as the financial statement goes, I believe that head office has the obligation to provide all of its members with these statements. If this is not the current policy, I hope you will change it at the upcoming AGM. As Treasurer of the Victoria Chapter, I always provide our members access to our records.

You will be pleased to know that as of this date, the three editors unanimously have voted to approve inclusion of your article, and no one in the steering committee has submitted comments.

I appreciate your interest in our Chapter and in the bulletin.

First, I would like to apologise to anyone who found the "Emperor Cretin" cartoon offensive.

It seems that if anyone questions the Board they either have an "agenda" or are guilty of an "attack," something I have been accused of myself.

If one questions the possible influence of the government due to the fact that it provides funding, one is accused, in the media, of being somebody "who doesn't give a damn about anybody else but themselves." People who are living what might be the last year, month, day of their lives certainly don't give of their time and money if they don't give a damn about anybody else but themselves. Somebody has to get the information of what has been taking place out to the membership. In my opinion the Board has become nothing more than a self-perpetuating dictatorship.

I was stunned when I learned, by accident, of the Board's decision to accept the services of a lawyer who imposed such restrictive conditions on our ability to fight for justice. We looked to the Board and the Society to act in our best interests. In my opinion, those of us who were infected outside the phoney "window" period were stabbed in the back and written off by the very Society we trusted.

What about the Society's RESPONSIBILITY to inform the members of these conditions before acceptance? How many members have been informed about this decision which had such an impact on their lives? If we have such an excellent reputation why have we been treated so badly?

Lack of Respect? Respect? How much respect has been shown to us? The Prime Minister insulted us under the cover of Parliamentary Privilege. The Health Minister led us around by the nose for many months with false promises. He stated at one time that "these poor people should not be forced to go through a long legal process," yet when I spoke to him face to face regarding the plight of those outside the phoney "window" period he said "The courts may decide differently." In other words, "Sue us."

Report by Darlene Morrow

Dr. Krajden, from the BC LCDC, recently moved here from Toronto. His speciality is the molecular detection of viruses. He has been chosen to spearhead this third attempt at getting the Center of Excellence for Hepatitis going. The initial concerns with the original proposal were:

-not comprehensive enough

-treatment versus prevention

-was there full use of existing resources

-focus on physical structures

What we want is to improve the care of people with hepatitis. We must:

-maximise resource utilisation

-provide a correct balance between treatment and prevention

-continuously improve treatment/prevention through education and research

-develop multi-disciplinary healthcare delivery systems which build on previous experience

In BC there are between 6000-7000 cases of HCV discovered per year. This is much higher than the national average. Hepatitis B in BC is four times the rate of the rest of the country although we hope to see a decline in the number of acute cases due to the introduction of vaccine programs. BC can be at the forefront of this movement. This requires:

-a comprehensive, coordinated and integrated hepatitis program from BC

-participation of key players

-more resources for each blood borne pathogen to have its own centers of excellence hence the Center will cover all forms of hepatitis and blood-borne pathogens.

Current health care delivery is fragmented. It provides limited information for decision making for patients and populations. We need infrastructure management of resources, allocation and teaching. Policies must be set. Analysis of data must be performed. Outcomes must be observational and include clinical trials. Guidelines must include + / - services, physical, laboratory, psychology, pharmacology, inpatients and outpatients . We must have standards across the board.

The Components of a Comprehensive Program:

A. Prevention

1. education; 2. Immunisation; 3. public health; 4. survey index

THESE MUST BALANCE WITH:

B. Treatment : 1. therapeutics; 2. services

Information technology and scientific advances have given us new knowledge in diagnostics, therapeutics and prevention. This must be driven to form a client-focused care-we must take control as consumers.

-outcome driven

-collection and tracking of data clinical problems, services, interventions, adverse effects and costs.

-definitions and measurements

-data must be transformed into information to determine the impact of interventions.

-mechanisms to alter practice and optimise care

-a seamless electronic patient record to longitudinally track individuals and populations

-clinical guidelines to optimise individual care

-public health guidelines to optimise population care

-optimise services

-information technology is the glue to hold this together. We need to connect the data and transform it into usable information.

Disease: -labs;-provincial labs;-CBS

Risk Factors: -blood;-sexual transmission;-vertical transmission;-IVDU

Optimise Outcome:-individual and a population;-collect, analyse, and maintain data;-maintain specimens

Public Health Issues:-surveillance;-outbreaks

We must use information technology for process improvement. We exist in silos-services are increasingly multi-disciplinary. Motivators and fundamental characteristics of people (status, appreciation, and power) will NOT change. We must potentate a solution to use information technology.

1. communication

-integrated 800 help line

-web, fax, letter, newsletter

2. connect existing databases

3. pilot seamless electronic patient records

4. streamline healthcare delivery processes

-complex care issues

-Krever and blood system

-resources intensive testing

-model to test infrastructure

-rapidly changing technology and therapies

-active community

-limited number of health care providers

-broad learning and teaching implications

Electronic record for use in multiple healthcare environments.

-provide continuous profiles accessible to authorised personnel

-streamlining data collection and analysis

-define elements required

-broad application to other diseases states

-streamline test ordering and filling out forms

-allow longitudinal result viewing

-longitudinal patient records for anonymous near real-time aggregate data analysis

-infrastructure for ongoing phase I-IV clinical trials

-information for biological sample bank-

-confidentiality and ownership issues

-incidence

-prevalence

-benefits and limitations of interventions

-current vs. projected costs

-criteria developed for healthcare intervention

-political drivers

(To be continued next month)