Resource Library

Get the Facts: Collection of Project Case Studies
Hepatitis C Prevention, Support and Research Program

Case Study: Hepatitis C Moncton Inc.
Moncton, New Brunswick

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The Development of Hepatitis C Moncton Inc. 

A Moncton nurse contracted hepatitis C, possibly while working in the Operating Room or from some other source; although she experienced a variety of physical problems, for a time she was unaware of her condition. When she returned home to Canada from California where she had been working, she was finally diagnosed. Using her medical knowledge, she sought out information to help her understand her disease and soon she was sharing that information with others. She became an advocate for the need for the prevention, testing and treatment of hepatitis C and tried to raise the awareness of the New Brunswick public. She received a lot of positive media attention. One newspaper article included her home phone number and people began to call her about starting a support group. 

As a result, she founded the Moncton Chapter of the Hepatitis C Society of Canada and then joined with other groups in Saint John and Fredericton to become the Atlantic Chapters of the Hepatitis C Society of Canada (HeCSC). This group was formed in 1995 under the umbrella of the National Office of the HeCSC, sharing information and contributing to national programs, services and workshops. The Chapter's mandate was: 

To fight hepatitis C through education, prevention, early detection, support, appropriate treatment and comfort. 

Context

According to the 2001 census, New Brunswick has a population of 757,000. The South-East Corporation of Region 1 is the largest health region in the province and covers 10,000 square kilometers, stretching from Nova Scotia through Westmorland, Albert and Kent Counties. It has a total population of approximately 185,000 people. At the centre of the region is the Greater Moncton Area which includes the towns of Riverview and Dieppe as well as the City of Moncton itself and which has an overall population of approximately 100,000. The area also has the somewhat unique linguistic characteristic of being almost evenly split between English (57%) and French (40%). Only 3% of the region's population are immigrants. Moncton is a thriving metropolis with many retail, manufacturing, and service-based industries. Over the past decade, it has gained a reputation as the call centre of the Maritimes, employing thousands of people in this industry. In 1996, Statistics Canada reported that 75% of the labour force in this Region was employed in the service industry, 20% in manufacturing or construction and 5% in resource-based industries.

While the Moncton area had a somewhat lower unemployment rate than the rest of the province, in 2002, there were still more than 10,000 people looking for work. In 1996 the average income was 18% lower than the national average. Most single parent families, a significant number of two-parent families, and many unattached individuals in the Region lived below the poverty line.¹ 

The Atlantic Region has the lowest reported hepatitis C rates in the country. In 1999, the rate of newly diagnosed cases in New Brunswick was 24.6 per 100,000, the third lowest in the country² but according to New Brunswick Health and Wellness, the rate of newly diagnosed cases of hepatitis C in Region 1 was 43 per 100,000, much higher than the provincial average. As of October 2001, there were 470 reported cases of hepatitis C in Region 1 of which approximately 150 were federal male inmates in Dorchester and Westmorland prisons. Of those living in the community, 114 were female and approximately 200 were male. The highest rates of infection were amongst people aged 30-49 (66% of all cases).³ 

An environmental scan published by Health Canada in January 2000 provided a summary of information about hepatitis C in the Atlantic Region.⁴ Overall, it found that the main risk factors were blood product infections and injection drug use. Further, there was a lack of information and infrastructure related to hepatitis C in Atlantic Canada in the areas of education, treatment, support and harm reduction. 

Between 24% and 45% of cases in the four Atlantic provinces reported that they had received blood or blood products.⁵ Atlantic region residents who were infected with HCV through the blood supply between 1986 and 1990 are entitled to compensation through the federal/provincial/territorial Settlement Agreement. Over a period of twenty years New Brunswick will receive $3.6 million. There has been no response to hepatitis C by the provincial governments; no compensation has been provided to those ineligible for the national settlement. 

In New Brunswick, 41% of all hepatitis C cases reported that they injected drugs.⁶ The rate of injection drug use in the region had increased over recent years and was a growing concern to health professionals and authorities. According to the Profile of Injection Drug Use in Atlantic Canada, a recent report prepared by Health Canada,⁷ the drugs most commonly injected in New Brunswick were opiates, including Dilaudid, heroin and morphine. The second most common was cocaine. However, there were also indications that a number of people were cross-addicted and used more than one type of drug such as "speed balls" (which combine opiates and cocaine), Ritalin and speed, and other combinations. While all intravenous drug users were at risk of contracting hepatitis C, cocaine users were seen to be at particular risk as their more frequent injection rate (between 12-20 times per day) increased the risk of transmission. 

In 1998, there were approximately 88 family physicians per 100,000 people in Health Region 1 but only five gastroenterologists served the area. The closest hepatologist was located in Halifax and was only available for consultation regarding liver transplants or severe liver problems. Hepatitis C Moncton reported that there was only one licensed physician in New Brunswick who prescribed methadone for opiate withdrawal.⁸ At one time he had treated between 80-100 opiate users per week but had decreased his methadone patient load number to approximately 55 per week due to lack of time, office space and support. 

Pharmacists in the region were concerned about the spread of blood-borne diseases including hepatitis C and HIV/AIDS and many offered free needles to drug users. However, a community issue arose about how needles were being disposed. Some parents complained of their children finding used needles close to school grounds and in other public places.

Hepatitis C Community-based Support and Education in Southern New Brunswick: Project History and Implementation

The environmental scan conducted by Health Canada observed that: 

...the region's community-based hepatitis C work is being conducted by volunteers. For instance, none of these groups whose main focus is hepatitis C reported any paid staff. 

At the Atlantic Chapters, this was certainly the case; the founder/Project Coordinator was a volunteer. The office was located in her modest apartment in a residential part of Moncton. One room was designated as the Hepatitis C Office and was equipped with a computer, filing cabinet, desk, chair and shelves. She used her small living room as a meeting space but it could only accommodate a group of five. 

In the early days, her personal address was published in the agency's brochures and materials. People would sometimes knock on her door "at all hours of the day and night" and, as she recalled, sometimes they were "not in a peaceful state of mind." They could also call her and as she described with some frustration: 

Sometime it is pretty hard to do this type of work. I find it hard to give support to people who are angry. I have a hard time dealing with them. They just want to yell at me. I tell them, "If you don't stop yelling at me, I will hang up," and I do hang up if it continues. Otherwise, things sometimes get blown out of proportion. How can one person please everybody 100% of the time? 

For security reasons, the agency acquired a post office box. However, the phone still rang in her home office and people still came to her door for various meetings. The burden experienced by the Project Coordinator and her fellow volunteers was described as follows: 

Over the last several years, the need for accurate information has been continually demonstrated. Our office and toll-free line has received numerous calls from not only the infected with/affected by/at risk of hepatitis C, but also for support, health, and service care organizations requesting information on varied aspects of hepatitis C, obviously showing a lack of educational information with which to make informed choices and decisions. While the expertise of our volunteer base is growing, their energy level is not. This, unfortunately, is not conducive and effective to a quick and ongoing response.⁹ 

The Chapter's Steering Committee felt that it was certainly time for a paid coordinator to provide consistent education and support and to meet the growing need. After receiving $10,000 in 1999 from Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-based Support Regional Project Funding for posters and pamphlets, they decided to apply for coordinator support. As the Project Coordinator recalled: 

Through all the years working, we were providing services but on a small scale. Everybody wanted more services and we made the decision to present a proposal. I did not know how to put a proposal together. I went with my experience. 

The proposal requested $100,000 over 24 months and included the salary for a full-time Regional Community Coordinator, as well as costs associated with travel, materials and equipment rentals. Health Canada approved the proposal for $25,000 in 2000-2001, $50,000 in 2001-2002 and $25,000 in 2002-2003. The project started on October 30, 2000. 

The project goals were as follows: 

• To promote the health and well-being of persons infected with/affected by/at risk for hepatitis C;

• To increase the awareness and education of persons infected with/affected by/at risk of hepatitis C, as well as community-based support, health, and service care providers and interested general public, of all aspects of hepatitis C;

• To develop a multi-faceted approach to program initiatives currently under development for a more effective, efficient response to those infected with/affected by/at risk of hepatitis C;

• To promote better understanding between community-based support, health, and service care providers in order to facilitate information sharing, networking capabilities and resource referrals; and

• To evaluate the program initiatives on an ongoing basis by incorporating a surveillance component in order to compile the informational data necessary to determine program impact, efficiency, and effectiveness.¹⁰

Target groups included: 

• People infected with/affected by/at risk for hepatitis C;

• Hepatitis C support group members, staff, and volunteers;

• Health care and service providers in the community;

• Specialty segments of the population, i.e., prisoners, people who inject drugs, etc.;

• Other interested organizations requiring information; and 

• The general public who may have concerns about the virus.¹¹

Partners included:

• Associate HeCSC Chapter of Saint John
• HeCSC Support Group of Fredericton
• Region 1 Public Health
• NB Health and Wellness
• Moncton Addiction Services
• John Howard Society of Moncton
• Correctional Services of Canada
• Canadian Liver Foundation
• Canadian Hemophilia Society
• Harm reduction groups;
• HIV/AIDS groups
• Social service agencies, halfway houses, correctional facilities¹²

The original Project Coordinator was hired as the Regional Community Coordinator because as a Progress Report explained: 

Her vast knowledge of the issues of hepatitis C made [her] an obvious choice for the position of Community Coordinator and, while she had never been in an administrative position of this sort in the past, she reached out to those around her to develop good working relationships with people who could help with the challenges she faced.¹³

One of those challenges was the agency's relationship with the HeCSC. Over the spring and summer of 2000, issues of ownership had begun to arise and as it was later described: 

We began to see that there wasn't really a clear understanding around who was responsible for the management and administration of the project. Over time, some tensions began to mount over this issue and the Steering Committee realized that this needed to be addressed.... There were many reasons why this confusion likely arose and no one is really to blame - unclear bylaws, policies, contract information...¹⁴

The Steering Committee contacted both the national office of the Hepatitis C Society and the Regional Office of Health Canada to ask for clarification. In the end, it was determined that it would be in everyone's best interest to have the local chapter set itself up as an independent organization. This was accomplished in December 2001, and the agency became Hepatitis C Moncton. It was incorporated on March 19, 2002.

The agency's mandate broadened somewhat to reflect its new independent status. It became, as the Coordinator described it:

To help reduce the spread and impact of hepatitis C through public awareness and education, information and support for people infected with, affected by, or at risk of hepatitis C and to build community and government partnerships to further our mandate.

She also commented that the mandate was more inclusive than it had been originally:

We offer hepatitis C support, regardless of the way the person got infected. At the beginning, there was some discrimination in regards to the clients.

Late in 2001, a Board of Directors was established with five members, all of whom had been members of the Chapter's Steering Committee and who were infected with or affected by hepatitis C. While by-laws were still in development, a draft policy for board nominations was established and the term was set at three years. One board member described the selection process as being very serious and confidential:

We approach people and ask them if they want to be volunteers. They go to the support meetings and if they like it, they can apply to sit on the board. We want to make sure that board members want to be there for the good reasons ...The rule of confidentiality is read at the beginning of each meeting. The members of the board need to participate and to work. They are not there only to talk and vote on issues.

The responsibilities for each of the board positions were clearly specified, including the role of the Executive Committee (President, Vice-President and Secretary-Treasurer) and the role of the Coordinator. As the board member commented:

We work with the Coordinator. We try to oversee everything. We are not looking over the shoulder of the Coordinator for day-to-day issues. The board makes the big decisions, and the Executive Committee makes the less important ones.

The Coordinator elaborated further:

If there is an important decision to make, like the content of an information booklet or if a decision involves money, the Board of Directors will decide. Basically, the Coordinator is responsible for the operation of the project with the support of the board executive.

However, the need for board development had emerged as a critical problem. The Coordinator observed that there had been a number of examples where the board had not been fully functional or had been disorganized, creating more work and frustration for her. Even when some members had been replaced, the same problems were being experienced again, suggesting that training on board processes was required.¹⁵

She was the only staff person at the agency but she was also its "senior volunteer" and so she wore two hats. As volunteer Executive Director, she acted as a spokesperson for Hepatitis C Moncton. As Coordinator, she acted as an employee, running support groups and putting together information tools.

Fortunately, approximately a dozen volunteers supported her in the agency. They devoted 100-200 hours each month towards helping with the design, delivery, management and evaluation of activities. The recently established group support program for infected persons was managed by volunteers and required few resources.

Hepatitis C Moncton Inc Budget Sources

	Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-based support Regional  Project Funding	85%
	United Way & door-to-door fundraising	15%

Typical activities included the following: 

• Providing telephone support and information; 
• Providing individual consultations; 
• Producing and distributing various information and awareness materials; 
• Offering peer support/self-help group meetings; 
• Conducting a needs assessment; 
• Making referrals to other services available in the community; 
• Networking and holding meetings with key stakeholders to identify and reduce/eliminate gaps in services; 
• Conducting media and public events; and 
• Making presentations to community groups and organizations.¹⁶

Hepatitis C Moncton Project Accomplishments 

1. Use of Hepatitis C Information

Hepatitis C Moncton was not only getting information out to at-risk groups and service providers; there was also evidence that the information was being used. Among the pamphlets and brochures that the agency had co-developed were the Hepatitis C Handbook for Injectors, which was disseminated nationally by the HIV/AIDS Clearinghouse and has already been reprinted. Their Living with Hepatitis C booklet, and Someone you know has, or could get, Hepatitis C pamphlet were widely distributed in the region in both French and English. Also available is the brochure, Are You Thinking About Being Tested for Hepatitis C?, also in both languages. 

In a typical three-month period, 30 information packages were mailed out, including a number to family physicians.¹⁷ The agency reported that over 50 physicians across New Brunswick were providing their pamphlets as handouts for their patients and approximately 25 local pharmacies were also distributing the materials. Evidence of their utility came from the project: 

These brochures are obviously being widely circulated as evidenced by the number of requests we have for restocking. Many of the calls we receive come from people who have found our number on pamphlets received at pharmacies or doctors' offices.¹⁸ 

It also came from client comments, such as the following: 

Lately, it has been quite easy to get information. Most doctors have a little brochure. There is also a little advertisement on the local radio station. 

Generally the clients we interviewed were more likely to receive the information they needed from Hepatitis C Moncton than from either their family doctors or other sources, as the following comments suggest: 

My life has changed for the better. This way I have the chance to educate my kids. When they will be older, I will be more involved in hep C. 

When I go to my family doctor and tell him how I feel he'll say "Oh yeah" and prescribe me some more pills - Tylenol 3s, Tylenol 4s, codeine and then send me home. I get a lot more value talking to someone who understands what it's like to have the aches and pains. That's what I get from Hep C Moncton. They take the time to explain it; they have more information on the interferon, Rebetron and treatment than the doctors do! They're prescribing all this stuff and they don't even know what it will do to you. The doctors do not have the information they should. Even the specialists don't know as much as they should.¹⁹

If I want information I will call the Hep C Moncton Coordinator. She gives me the information I need about hep C. My doctor wanted me to take Interferon. I was very sick at that time. I said no to the treatment. I prefer dying than going through the treatment. 

The agency also held a day-long workshop at the Moncton Hospital in the spring of 2001. More than 100 frontline workers, hepatitis C infected/affected persons and members of the community attended and heard from specialists in the field of hepatitis C. 

Another important accomplishment was to make information about hepatitis C more accessible to the inmate population. The contribution of the Coordinator of Hepatitis C Moncton to the SHARP project (Surviving Hepatitis C and Risks in Prison), sponsored by the John Howard Society (and also funded by the Hepatitis C Prevention, Support and Research Program's Prevention and Community-based Support Regional Project Funding) was so significant that she received special mention in the project materials "for always going that extra mile and being an incredible source of inspiration."²⁰ The educational materials included a deck of playing cards, a pocket book on hepatitis C, and a poster, developed at a literacy level of Grade 6. With the help of additional funding, these tools were being distributed throughout Canada's prisons. The Coordinator was also involved in developing a questionnaire to evaluate the pocketbook. As the Education Coordinator at the John Howard Society of Moncton commented: 

In the context of the prison population, my experience has been really positive. The inmates are very keen on getting information and want to be helpful but there is still a lot of stigma among the prison population....This issue is close to the heart of a lot of inmates. 

The agency's toll-free telephone number was expanded beyond New Brunswick, thanks to the contribution of a private donor, and information was widely distributed using this medium throughout the Atlantic Provinces. The toll-free line was also made directly accessible to inmates of the correctional facilities of Westmorland and Dorchester. In a typical three-month period in 2001, the agency received approximately 60 calls for information that may be broken down as follows:²¹ 

Call Record for Information Requests
Typical Three-month Period in 2001 

• 14 general information 
• 13 calls from inmates 
• 8 transmission 
• 8 compensation 
• 8 treatment 
• 5 general support 
• 2 liver biopsy 
• 1 herbal remedies 
• 1 vaccination 
• 1 viral clearance

By the first quarter of 2002, demand had grown to over 100 calls in three months. 

2. Development of Effective Partnerships and Collaborations 

There was a lot of evidence to suggest that Hepatitis C Moncton was able to develop many strong, effective and creative partnerships. They could be divided into three different partnership types. 

a) Significant Exchange, Mutual Benefit 

The first type involved a significant exchange of knowledge and services for the benefit of both partners. These included: 

• John Howard Society of Moncton
  The Coordinator worked collaboratively to develop and distribute information about hepatitis C to offenders, ex-offenders and high-risk youth. As a member of this agency's SHARP Advisory Committee (Hepatitis C Education for Inmates and their Families), she worked closely with them to develop educational tools. In return, the agency was able to access these hard-to-reach target groups. 

• Canadian Nurses Association
  The Coordinator was a member of the Steering Committee for the Canadian Nurses Association's Health Canada-funded project entitled, Increasing Awareness and Competencies in Hepatitis C Among Nurses; and had input into the content of the Association's Nursing Guide for Hepatitis C. Her personal story, "Living with Hepatitis C as a Nurse" which was published in the hepatitis C supplement to the Canadian Journal of Public Health in August 2000, was included in the Guide along with the story of one infected member from Hepatitis C Moncton. She was involved in reviewing the Guide and planning its distribution. By sharing her expertise and personal experience, the agency received two benefits: both an opportunity to build capacity among health care professionals and a chance to increase its visibility on a national level. 

• Greater Moncton Harm Reduction Steering Committee
  The Coordinator was a member of a multi-stakeholder committee whose primary target group was people who inject drugs. At the time of our visit, the Committee was working on the establishment of a mobile needle distribution van. If the funding was received, Hepatitis C Moncton would provide staff and volunteer training and could disseminate agency materials. Through working towards a common goal, the agency was going to be able to reach out to a high number of at-risk/infected people. 

• First Canadian Conference on Hepatitis C Organizing Committee
  The Coordinator co-chaired the Community and Social Sciences Track of the 1^st Canadian Conference on Hepatitis C. She also presented two speeches at the conference. Proceedings were distributed throughout the Atlantic region by the agency. In exchange for providing first-hand experience and community expertise, the agency received networking opportunities, most importantly inclusion in the Atlantic Hepatitis C Connection, a network of hepatitis C group leaders inaugurated at the conference.

b) Shared Target Groups and Community Objectives 

The second type of partnership evolved due to shared target groups and shared community objectives. Their collaboration involved general information-sharing, dissemination of materials, referral of clients and general support. As the Project Coordinator commented: 

We have established excellent working relationships with other key stakeholders and community groups in the region. These partners share resources and provide us with a wide range of in-kind services. This keeps our costs down and allows us to achieve a great deal more than if we were trying to do everything ourselves. 

These partners included: 

• New Brunswick Department of Family and Community Services
  The Department delegated a public health nurse to sit on the Steering Committee, provided meeting space and disseminated project materials. 

• New Brunswick Department of Health and Wellness
  As of March 2002, the Department announced that Hepatitis C Moncton was considered to be a partner. The Coordinator was invited to speak to the Department's Addiction Services about the implications of having hepatitis C testing in all Addictions Services facilities. 

• Addictions Services Methadone Clinic Steering Committee
  The Hepatitis C Moncton Coordinator was a member of this Committee that was exploring the possibility of providing a clinic with supervised urine sampling, drug testing and counselling. 

• Public Health Region 1
  The Region referred clients to Hepatitis C Moncton and disseminated project materials. 

c) Credibility Lent through Status

The third type of partnership lent credibility to Hepatitis C Moncton due to the partner's status or visibility in the community and their strong commitment to agency goals in their own circle. These included: 

• High Profile Family Physician/Researcher
  The only licensed physician in the province who prescribed methadone recently joined the Project Steering Committee. From his perspective as a physician he would be able to offer assistance in developing a strategy to build capacity among family physicians. He was conducting a study examining the relationship between methadone and hepatitis C and would inform the agency of his findings.

• Local MP and MLA
  The local Member of Parliament and the local Member of the Legislative Assembly (who was also the Minister of Family and Community Services) participated in the unveiling of the agency's logo and first Annual General Meeting. They provided support and guidance regarding provincial and federal health priorities. The previous New Brunswick Minister of Health sent a special communiqué to all family physicians in the province to make them aware that Hepatitis A and B vaccines were available free of charge for hepatitis C infected patients, included a copy of Hepatitis C Moncton's French and English pamphlets and encouraged them to contact the agency for further information or materials. 

The agency was well aware of the value of these many partnerships. The following comment appeared in the agency's Progress Report: 

During the first year of our project, a great deal of our time was spent developing services, building partnerships and establishing ourselves in the community. However, as time has gone on the project has become better known and an increasing number of stakeholders are calling upon us for participation in their activities.... We plan to continue our involvement and co-operation with our current partners and believe the sustainability of the project will be greatly enhanced through these collaborative efforts.²² 

3. Improved Care and Treatment Support 

There were many indications that Hepatitis C Moncton was improving support services for victims of hepatitis C to help them deal with their anxiety and stress. In a typical three-month period, the Coordinator held eight face-to-face education and support consultations, predominantly for the newly diagnosed but some were about transmission or treatment.²³ 

A peer support self-help group was held each month and approximately eight infected or affected people typically attended.²⁴ However, at one meeting a breach of confidentiality occurred which led to the design of a Support Group Confidentiality Agreement that each individual had to sign in order to become a participant. Confidentiality was indeed an issue in this small city. As one client commented in her interview: 

I don't want to go to the support group because people know me. They will think I have Hep C or the father of my kids will know my partner has hep C. 

When we asked clients what was best about Hepatitis C Moncton, they all agreed that the support they received was the main benefit:²⁵ 

Since we found out about Hep C Moncton last summer, we had some support. I phone her [the Coordinator] for information. She is giving us a lot of support. She is a friend. I called the national hot line (we found that phone number in the directory) and they gave me [Hepatitis C Moncton's] phone number. 

The support. Any time of day she [the Coordinator] will be there for me. 

Number one is the support group. There is also a ton of information, mostly on prevention. 

Having hep C crushed me. My life has totally changed since I have known I have hep C. I lost a relationship. After losing my job, I was depressed and was contemplating suicide. Hep C Moncton's Coordinator talked me out of doing anything bad to myself. Now I don't want to apply for another job before my psychiatric problems are resolved. Having hep C affects my social life, but now I am less isolated. 

The day that my doctor told me I had hepatitis C I went in a daze. When I got home, there was a friend there who gave me the number for Moncton Hep C. I called right away and I was crying and hysterical. The Coordinator calmed me down and kept reassuring me that I wasn't going to die the next week. If it hadn't been for them, I would have been on my own with no one to turn to. It was majorly important that somebody tell me something about what to expect.²⁶ 

The project also provided us with comments from people affected by the disease, as follows: 

My husband would go to the doctor and when he got home I would ask him all these questions but he didn't have the answers. He's not the kind of person that really questions a doctor - me, I want to know. But because of patient-doctor privilege, I can't call his doctor and my family doctor doesn't know much about it either. Once I found out about Hep C Moncton, I started asking for information from them and they seem to have all the answers I need. 

I didn't ask my husband certain questions because I knew he was already feeling ashamed of his disease. But I was worried about how to protect our children and myself and couldn't seem to get many answers. Finally, I got a hold of Hepatitis C Moncton and they had loads of information for me.²⁷ 

Challenges faced by Hepatitis C Moncton 

1. Awareness Still Needed in Specific Target Groups

Despite the headway made by Hepatitis C Moncton in a relatively short period of time, everyone we interviewed agreed that developing awareness about hepatitis C was still a significant issue in the Moncton area. As a representative from the New Brunswick Department of Health and Wellness, Public Health Division commented: 

No, there is not enough information on hepatitis C. More information is required on the following topics: prevention in at-risk populations (e.g injection drug users), risk factors (e.g. needle sharing), disease transmission, support groups and other types of support and information on care and treatment. The majority of people do not know what is hepatitis C. There should be information adapted for persons with lower levels of literacy and education. Even physicians know little about hepatitis C. 

In particular, several target groups were repeatedly identified as needing information about hepatitis C. 

a) Employers

The need for employer awareness was mentioned to us a number of times by agency clients as they recounted their negative experiences in the workplace. Several had lost their jobs once their employer learned they had hepatitis C. Hepatitis C Moncton reported on the serious impact that a lack of appropriate information had in the workplace: 

An issue that has repeatedly come to our attention over the past year is the high level of stigmatization around hepatitis C that currently exists in the community and particularly amongst employers. It appears that many people in the community have the impression that HIV AIDS and Hepatitis C are basically the same thing. 

Having experienced this negative response in the workplace, infected individuals stopped informing employers or co-workers about their disease. However, feelings of guilt, depression and anxiety could then result. But as a recent agency document commented: 

While they admit that some of these feelings may be their own paranoia, there is adequate evidence to suggest that people infected with hepatitis C do indeed face discrimination as a result of their disease. 

The document went on to provide clients' examples: 

A couple months after I found out I had hepatitis C, my doctor started doing a lot of tests and stuff and I had a number of appointments to attend. So I went to my boss and told him "I just found out about this, you don't have to worry about anything, I'm not contagious to other workers" and tried to explain to him the information that I had. Four hours later I was laid off! That was really devastating for me because I had been assured that my job was permanent and we had just bought a new house. I had been doing really well at my job, never any complaints, lots of compliments. My boss said "This isn't because you have the disease or anything" but I was never called back. This was a real lesson for me - I've never told another employer since. 

I lost two jobs after telling my employers I had hep C and since then, no way. I went to one employer, and tried to explain to him how careful I am and told him that I carry my own kit with me to clean up after myself if I happen to cut myself - nobody else cleans up after me. But my employer thought it was going to turn into AIDS and other employees would just avoid me. Things got so uncomfortable; I ended up quitting myself because I couldn't take the stares and everybody looking at me. They stayed away from me and wouldn't talk to me. I was a big taboo.²⁸ 

Hepatitis C Moncton was requested to work with the New Brunswick Human Rights Commission regarding the case of one such individual who was fired once the employer discovered that the individual had hepatitis C. 

b) Family Physicians

In conjunction with the Moncton Chapter of the Canadian Liver Foundation and Schering Inc., the agency had planned a hepatitis C information dinner and had invited 100 family physicians in the Greater Moncton area to attend. A presentation entitled "Treatment of Chronic Hepatitis C" by a well-known Moncton gastroenterologist was planned. Unfortunately, only four physicians replied and the dinner was cancelled. This experience demonstrated how difficult it is to reach this target group. The agency decided that the next time they tried to offer an event like this, they would include continuing medical education credits as an incentive. 

When the agency conducted a needs assessment, which involved interviews with 40 infected or affected adults or teens, the main theme that emerged was the lack of hepatitis C knowledge among family physicians.²⁹ Several of the clients we interviewed recounted negative experiences with their family physicians or health care workers due to their lack of adequate information about the disease: 

I've had hep C for 20 years. Maybe it is too late for me to get treatment. I don't believe there are enough support services at the hospital or at the doctor's office. They treat us just like an ordinary patient. It was OK the first time I called an ambulance, but the fourth time I called they said: "It's just [client's name], he can walk". 

We need more specialists, doctors. They make us feel that it is our fault if we have hep C. 

My doctor asks me questions on hep C because he doesn't know much. 

As a board member commented: 

Some people call on the hot line - they want to commit suicide because they didn't get the right information from their doctor. 

Again, the agency was able to recount infected clients' experiences: 

I called my doctor about half an hour after I got the letter from Red Cross and got in right away but I couldn't see my regular family doctor and had to see someone else that was on call. He made it sound like I had AIDS or something. He told me I couldn't have sex with my common-law wife, he told me I had to quit smoking and drinking and taking my Diazepam which I've been on for 12 years. He said it was like AIDS. I honest to God thought I was going to die.

Doctors need to be better informed. When you're telling a single parent "you're dying" and you have small children at home, what are you supposed to think? My doctor had nothing to give me, not a pamphlet or any information at all. He gave me no indication if I would live 10 weeks or 10 years, nothing. I just went home knowing I was dying.³⁰ 

c) Youth

The clients we interviewed indicated that young people should have more information about hepatitis C and that education should be provided for them both in schools and in the community. As one client commented: 

The young people should have their own place to go to for support and services. 

While the risk factors associated with injection drug use needed to be addressed with this population, there was also a growing concern about the number of young people being tattooed or having body parts pierced with unsafe equipment. 

In the opinion of the Coordinator and board members at Hepatitis C Moncton, there was only one possible solution to these awareness needs: 

We believe that the best approach to dealing with this issue is to educate, educate, and then, educate some more.³¹ 

2. Growing Prevention Needs

Although hepatitis C information was being disseminated where there had been none before, the agency found that the need for prevention was actually growing. In particular, two at-risk groups were mentioned repeatedly as being at greater risk as time went by. 

a) People who Inject Drugs

According to a recent report prepared by Hepatitis C Moncton, not only were more youth injecting drugs, but drug use was also increasing in frequency among people over the age of 25. 

Consultation with front-line workers from the Regional Addictions Services Treatment Centre confirmed that there is a phenomenal increase in the use of injection drugs in this Region and that they deal regularly with people of all ages who have opiate and cocaine addictions. Ten years ago, the Addictions Centre in this region didn't even have one "opiate-addicted" client and yet today it is one of the most common reasons for admission....In 1999, of all the persons admitted for drug addiction, 26.5% were IDU's. By the end of 2001, this figure had increased to 65.9%.³² 

While efforts were being made by the Greater Moncton Harm Reduction Steering Committee (of which Hepatitis C Moncton was a member) to establish a Needle Distribution Program, no funding for this critical service had been secured. The agency's partnering physician had long been an advocate for the development of a provincial methadone treatment program but there had been no developments on this front. 

Looking at the growth in the number of people who inject drugs, it seemed clear to the Coordinator that hepatitis C funding would have to be continuing rather than project-based because of the growing threat in this population and the low priority of IDU on the public agenda.³³ 

b) Prison Populations

Despite the excellent work done by the SHARP project, the representative from the John Howard Society indicated that there were still not enough services offered to the prison population. The SHARP handbook suggests that 30-40% of all Canadian inmates were infected with hepatitis C, as did 9 out of 10 inmates who had ever injected drugs.³⁴ As a result, more harm reduction programs, including access to clean needles, more peer education and support, and more effective addictions programming are required. In particular, she indicated that more information was still required on the following topics: 

...prevention for special populations (e.g., injection drug users), risk factors (e.g., sharing of needles), disease transmission, support groups/other sources of support (there is a real sense of isolation in the prisons), harm reduction strategies, and care and treatment information. Inmates don't realize the risk of sharing needles and inks in tattooing. They also share personal items such as shaving blades.

3. Agency Growth Required

The third challenge faced by Hepatitis C Moncton was the need for more funding to address the growing demand for service. All the stakeholders we interviewed agreed that the agency provided a much-needed service but that it needed to be expanded. A number suggested the need for a counselling or therapy component. They pointed out that some support staff were needed to help field the many calls received. As the Coordinator saw it: 

If Hep C Moncton had more staff, we could do a lot more. 

Above all, however, the agency needed accessible and public office space with enough room for meetings and private consultations. The lack of regular office space had a negative impact on public perception. The Coordinator commented: 

Fundraising is hard and practically impossible when you're operating from your home. Some people think that the organization pays for a part of my rent! 

She elaborated by saying: 

We need operational funding, please. It would make such a difference if we only had an office, somewhere to get started. 

To this end, the agency was developing a fundraising strategy and planned to hold a door-to-door awareness and fundraising campaign. The board was in the process of developing their bylaws and once this was done they would apply for a charitable registration number so that they would be able to offer tax receipts to donors. They were also looking at ways to secure funding from foundations and other municipal, provincial and federal government agencies and was preparing some research and programming proposals. They believed that their continued involvement with their current partners would greatly enhance their chances of sustainability. Judging from the number of strong community links they had forged so far, it was easy to believe that they would be successful. 

The following types of documents were reviewed in the preparation of this case study: 

• Project documents from Health Canada 

• Original Project Proposal Submitted to Health Canada on June 9, 2000 

• Project Proposal Submitted to Health Canada on April 17, 2002 

• Project Progress Report Submitted to Health Canada on December 20, 2001 

• Quarterly Reports (October 2000 - December 2001) 

• Job descriptions: Project Coordinator, Executive Director 

• Hep C News, Newsletters (3 issues: June, September and December 2000) 

• Power Point Presentation: 
  • Hepatitis C 101
  • Hepatitis C Cases Compared to AIDS Cases Reported in New Brunswick

• Hepatitis C Moncton resources including information sheet (Hepatitis C Facts), brochures (Drugs and Alcohol, Diet and Hepatitis C, The Proper Use of Drugs and Medications, How can I Protect Myself? What are the Routes of Transmission?), booklet (Living with Hepatitis C - A Support Guide/Vivre avec l'hépatite C - Un guide d'appui) 

• Letters of support for Hepatitis C Moncton's 2002 funding proposal to Health Canada 

• Surviving Hepatitis C And Risks in Prison (SHARP) pocket book and Playing Card Mock-Ups (produced by the John Howard Society of Greater Moncton)

References

1. Project Proposal Submitted to Health Canada on April 17, 2002. p. 2.
   
   
2. Health Canada Notifiable Diseases Annual Summary 1999. Canada Communicable Diseases Report, 2001.
   
   
3. Project Proposal Submitted to Health Canada on April 17, 2002, pp. 2-4.
   
   
4. The Environmental Scan on Prevention Infrastructure and Capacity in Atlantic Canada. Health Canada. February 4, 2000.
   
   
5. Profile of Injection Drug Use in Atlantic Canada, Caroline Ploem, PPHB Atlantic Regional Office, October 12, 2000.
   
   
6. Profile of Injection Drug Use in Atlantic Canada, Caroline Ploem, PPHB Atlantic Regional Office, October 12, 2000.
   
   
7. As reported in Project Proposal Submitted to Health Canada on April 17, 2002, pp. 2-4.
   
   
8. Project Proposal Submitted to Health Canada on April 17, 2002, pp. 2-4.
   
   
9. Project Proposal Submitted to Health Canada on June 9, 2000.
   
   
10. Project Proposal Submitted to Health Canada on June 9, 2000.
    
    
11. Project Proposal Submitted to Health Canada on June 9, 2001.
    
    
12. Project Proposal Submitted to Health Canada on June 9, 2000. p. 10.
    
    
13. Project Progress Report Submitted to Health Canada on December 20, 2001.
    
    
14. Project Progress Report Submitted to Health Canada on December 20, 2001.
    
    
15. Personal communication. September 18, 2002.
    
    
16. Quarterly Report, October 1^st thru December 31^st, 2001, Project Proposal Submitted to Health Canada on April 17, 2002.
    
    
17. Quarterly Report. The Greater Moncton Chapter of the Hepatitis C Society of Canada. April 1-June 30, 2001.
    
    
18. Project Proposal Submitted to Health Canada on April 17, 2002, p. 7.
    
    
19. Project Proposal Submitted to Health Canada on April 17, 2002, p. 6-7.
    
    
20. Surviving Hepatitis C and Risks in Prison...the Facts. The John Howard Society of Greater Moncton. April 2002.
    
    
21. Quarterly Report. The Greater Moncton Chapter of the Hepatitis C Society of Canada. April 1-June 30, 2001.
    
    
22. Project Progress Report Submitted to Health Canada on December 20, 2001.
    
    
23. Quarterly Report. The Greater Moncton Chapter of the Hepatitis C Society of Canada. April 1-June 30, 2001.
    
    
24. Quarterly Report. The Greater Moncton Chapter of the Hepatitis C Society of Canada. January 1-March 31, 2002.
    
    
25. The first four quotations are from the case study interviews; the final comment provided by the project.
    
    
26. Project Proposal Submitted to Health Canada on April 17, 2002, pp. 6-7.
    
    
27. Project Proposal Submitted to Health Canada on April 17, 2002, pp. 6-7.
    
    
28. Project Proposal Submitted to Health Canada on April 17, 2002, pp. 8-9.
    
    
29. Quarterly Report. The Greater Moncton Chapter of the Hepatitis C Society of Canada. January 1-March 31, 2002.
    
    
30. Upcoming Project Proposal Submitted to Health Canada on April 17, 2002, pp. 8-9.
    
    
31. Project Progress Report Submitted to Health Canada on December 20, 2001.
    
    
32. Project Proposal Submitted to Health Canada on April 17, 2002, pp. 2-4.
    
    
33. Quarterly Report. The Greater Moncton Chapter of the Hepatitis C Society of Canada. January 1- March 31, 2002.
    
    
34. Surviving Hepatitis C and Risks in Prison...the Facts. The John Howard Society of Greater Moncton, April 2002.

 

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