Resource Library

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

Case Study:
Winnipeg Hepatitis C Resource Centre
Winnipeg, Manitoba

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The Development of the Hepatitis C Resource Centre

Across the street from Winnipeg's Health Sciences Centre, home of the hepatitis C clinic, is a building known as the Manitoba Self-Help Clearinghouse Concerning Disabilities. It is owned by the Society for Manitobans with Disabilities and houses a number of small not-for-profit agencies. In a tiny office on the second floor, the Hepatitis C Resource Centre (HCRC) offers support and information to those infected with or affected by hepatitis C. The space is crammed with desks, a bookcase, a filing cabinet, piles of papers and files, and boxes of resources; not to mention two or more staff and volunteers. It is hard to find a place to sit down, but for the Executive Director, this situation is a huge improvement over the old days when she worked out of her home. 

In 1991, her husband contracted hepatitis C. It took a while for the disease to be diagnosed and when a positive test result was finally found, it was devastating for them both. She recalled: 

I was very, very scared for him. I remember for months going to work and just crying and crying.¹ 

Eventually, she realized the futility of this and began to learn all she could about hepatitis C. By 1996, she was so knowledgeable about both the disease and compensation for victims that she was invited to speak on a radio talk show. There she met another woman, recently moved from Ontario, whose husband was also infected with hepatitis C. Out of their desire to help others and to spare them the anguish that they had been through, the two women formed the Manitoba Chapter of the Hepatitis C Society of Canada. As the Executive Director remembered: 

We were concerned about prevention, education and compensation. Ontario had received compensation and we were trying to achieve the same thing. 

Starting with five members, the Chapter grew to 250 members by the summer of 2000 and was receiving up to 40 calls a day. 

Context

In Manitoba those who were infected with HCV between 1986 and 1990 through the blood supply, were entitled to compensation from the national settlement; those infected either before 1986 or after 1990 received a one-time payment of $10,000 from the Province.² The announcement of provincial support was delivered to the public through a press release on January 18, 2001. "We're really proud of the work of [the Co-chairs] and the Manitoba Chapter members," said the Hepatitis C Society of Canada Chairman of the Board. Manitoba also made efforts to identify and inform all people potentially infected by the blood system³ and was one of the few provinces that covered the cost of Rebetron®, a medication used in the treatment of hepatitis C.⁴

On November 3, 1999, Health Canada invited representatives of interested community organizations to meet to identify priority strategies for the Provincial Hepatitis C Program. Consensus priorities for the Manitoba Hepatitis C Prevention and Community Support Program included: 

• Harm reduction; 
• Community support; 
• Education; 
• Determinants of health focus.⁵ 

In March 2000, an environmental scan conducted by Health Canada⁶ found that most organizations or agencies working in the area of hepatitis C devoted only a small percentage of their time to this health issue, compared to other health concerns. Further, the hepatitis C programming that did exist was mainly provided in the context of HIV/AIDS, substance abuse, or sexually transmitted diseases (STDs). The environmental scan listed a number of barriers related to addressing this health issue in Manitoba, including: 

• A low knowledge level; 
• Lack of resources; 
• Attitudinal barriers; 
• Lack of coordination; 
• Barriers related to poverty and lack of housing; and 
• Geographical barriers 

By 2000, the rate of newly diagnosed cases of hepatitis C in Manitoba was 43.9 per 100,000, somewhat below the national rate (63.6 per 100,000 in 1999)⁷ and the province's population was approximately 1.1 million. Over half of its residents (56%) lived in Winnipeg which had a population of 619,544 in 2001. The Winnipeg Health Region served 653,728 as of June 2001⁸ both in the city and the nearby rural areas. As the main urban setting in the province, it was not surprising that Winnipeg had the highest hepatitis C rate, at 61.4 newly diagnosed cases per 100,000.⁹ The city's Aboriginal population has increased over the years due to a high birth rate, decreasing mortality rates, increasing Aboriginal self-identification and in-migration from rural areas. By 1996, 45,740 Winnipeg residents identified themselves as North American Indian, Métis or Inuit.¹⁰ 

In 1998, the Winnipeg Injection Drug Epidemiology (WIDE) Study was conducted by the Epidemiology Unit of Manitoba Health. Findings for people who injected drugs included: 

• HIV prevalence in Winnipeg in 1998 was approximately 12.6%; 

• Injection drug use (IDU) was well established in Winnipeg, with the median year of first injection being 1987; 

• There were nearly as many women intravenous drug users identified as men. The female users tended to be younger and had initiated injecting more recently; 

• A disproportionately high number of the users who were surveyed identified themselves as Aboriginal. The male-to-female ratio among this population was approximately equal compared to the approximately 2:1 ratio among non-Aboriginal users;

• Overall low education levels, low income, high unemployment, and unstable housing characterized the Winnipeg IDU population;

• 60% reported that more than half of the time they obtained new needles prior to obtaining drugs. However, a significant number of individuals also reported risky injecting behaviour in the last year including: binge injecting, injecting with a needle used by someone else, and using water to clean needles;

• Approximately 30% reported having difficulty obtaining needles at least some of the time.¹¹ 

By 2000, 40% of the 505 individuals diagnosed with hepatitis C that year in Manitoba reported that they injected drugs. Most new infections were among males, and most tended to be between the ages of 30 and 49; 18% of new cases were Aboriginal. In that year, there were 41 new cases reported at the Stony Mountain and Headingly Correctional Institutions, both on the outskirts of the city of Winnipeg. 

In recent years, Winnipeg has become a research centre for hepatitis C. In 2000, the federal government, through Health Canada's Hepatitis C Prevention Support and Research Program, announced that it would contribute $350,000 to the position of a Chair of Hepatitis C and Liver Research in partnership with the University of Manitoba and the Health Sciences Centre. The federal government, through strengthening Canada's research capacity, hopes to improve the health of all Canadians.¹² 

At the moment, however, there are few treatment, care and support options for hepatitis C victims in Winnipeg. When we asked clients of the HCRC what other services were offered to individuals infected with or affected by hepatitis C, their unanimous response was that services were severely limited. They identified the following supports in the community: 

• Sage House
  An inner city project for street-involved women, which provides peer support/counselling, prevention information, education and training on hepatitis C and related issues. 

• Mount Carmel Clinic
  A community health clinic which offers hepatitis C testing and provides condoms, counselling and a needle exchange. 

• Main Street Project
  An emergency shelter for the homeless which provides detox and referral services and has a follow-up hostel on site. 

• John Howard Society, Manitoba Chapter
  Implements a prevention peer education and harm reduction program aimed at reducing hepatitis C infection and co-infection for inmates and their families using a holistic approach, incorporating traditional teachings and Aboriginal spirituality. 

• Hepatitis C Clinic
  The University of Manitoba and Health Sciences Centre provides care directly to patients. 

• Sunshine Initiative
  Works in partnership with drug users infected with or at risk of co-infection with hepatitis C and HIV/AIDS, individuals who are leaving jail and those involved in or leaving treatment programs. Has a focus on youth.

• Winnipeg Regional Health Authority (WRHA)
  To meet the immediate need of people infected with hepatitis C, the WRHA provided physicians at twelve different health centres in the region who had been trained on issues associated with hepatitis C at a basic level. Issues of availability of and access to family physicians with this training were being explored. 

There were two hepatologists in Winnipeg; care and treatment for patients with hepatitis C was mainly provided by gastroenterologists. As one HCRC board member with hepatitis C described his medical experience: 

The general practitioners were not very knowledgeable. [The hepatologist] is very overworked - they need more staff and funding at the hepatology clinic. Initially I had an 18-month waiting period before I could get in to see him and then I had to wait another year before I could have a biopsy done.… You don't have to wait that long to see a specialist for any other disease. I was not offered any other support in the time I had to wait. It took four weeks for them to get my official blood work back; then when I went for the biopsy I had to wait again. 

Project History and Implementation 

The transition of the small, home-based Manitoba Chapter of the Hepatitis C Society to the incorporated, independent and centrally located Hepatitis C Resource Centre is an interesting story. 

a) Hepatitis C Society of Canada - Manitoba Chapter Booklet Project 

The Manitoba Chapter of the Hepatitis C Society of Canada was an unincorporated affiliate of the national organization whose mission and vision are as follows: 

The Hepatitis C Society of Canada (HeCSC) is a non-profit, national voluntary health organization. Our mission is to fight hepatitis C through prevention, early detection, support, appropriate treatment and comfort. Our vision for the future is that: 

• The spread of hepatitis C is dramatically reduced; 

• All people of Canada understand the risk activities for hepatitis C; 

• All people of Canada have equitable access to testing for hepatitis C; 

• A comprehensive hepatitis C research program is established; and, 

• All people of Canada have equitable access to resources to address hepatitis C.¹³ 

From 1996 to 2000, the two women who founded the Chapter worked from their homes. Two programs increasingly stretched their personal resources as the number of callers increased: the Blood Notification program, and the Manitoba Look Back-Trace Back Initiative, which is a program to identify the donors who were the source of infected blood for individuals with transfusion-related infections ("trace back"), and to identify which patients received blood from an infected donor ("look back"). As one of them explained:

We provide them with information and let them know they are not alone. When the blood notification program came along we were there to support and reassure people. We were a vessel for their anger and we played a huge part. We joined up with other groups and gained a broad understanding of all groups affected. We shared our knowledge. We get a lot of calls about information about the disease. 

Even the Chapter newsletter was produced in the Executive Director's basement. It was her dream to strengthen the structure of the organization and to establish an office and drop-in centre for people with hepatitis C. 

The provincial Viral Steering Committee (VSC) was organized by the province to respond to the emergency and the Blood Notification Announcement. The committee was looking for a better-coordinated response to the emergency. It was comprised of medical experts and provincial and federal government representatives. Pressure from community-based groups, including HCRC, facilitated the creation of this committee. 

The Chapter was able to provide some support during the waiting period. As the Executive Director explained: 

It's hard on people to wait that long. We have a "buddy" system. If newly diagnosed people are really anxious, they will be paired up with someone who has gone through treatment while they are waiting to see a specialist. 

Based on the Executive Director's personal struggle to find appropriate information on hepatitis C, the Chapter decided to create a useful resource booklet, What to do if you are hepatitis C positive.¹⁴ In January 2000, it received funding of $34,000 from Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-Based Support Regional Project Funding to: 

increase awareness of hepatitis C-related programs and services available in Winnipeg … [and to] develop and distribute a comprehensive, user-friendly booklet to assist people to make decisions regarding treatment, housing, employment issues and related issues.¹⁵ 

The process involved the formation of a Community Advisory Committee consisting of a nurse representing the WRHA, a hepatologist, a representative from Manitoba Health, a representative from Health Canada, a graphic artist, a professional writer, and some individuals infected with or affected by hepatitis C. This committee made recommendations on format, content and design. Writing the booklet proved to be a challenge and it was re-written a number of times. 

Topics in the booklet, entitled Manitoba's Hepatitis C Support Guide, included: 

• What is Hepatitis C? 
• How it is Spread 
• Risk Categories 
• How it Affects the Body 
• What Happens After I'm Diagnosed? 
• Coping with the Diagnosis 
• Telling Friends and Family 
• Resources 
• Appendices
• A. Glossary
• B. Liver Function Tests
• C. What is Cirrhosis?
• D. Universal Precautions 

Members of the Chapter were not satisfied with the final product as they felt it would have been more helpful if it had been worded from an infected person's point of view. They also felt that coping strategies were not well enough addressed. However, feedback about the booklet was generally positive and Manitoba Health provided additional funding, first to translate it into French and then in 2001 to revise and reprint it. 

b) Hepatitis C Resource Centre - HCRC Needs Assessment Project 

A number of factors influenced the Chapter to consider requesting funding to conduct a needs assessment. These included: 

1. The increasing number of requests for information received;
   
   
2. The increasing hepatitis C infection rate in Manitoba;
   
   
3. A growing understanding of the potential needs of people living with or affected by hepatitis C;
   
   
4. The awareness that these needs should be better addressed;¹⁶ and
   
   
5. A need to build on the Environmental Scan of 2000 conducted by Health Canada.¹⁷ 

In July 2000, the Manitoba Chapter received $50,000 of funding over 21 months (2000-2002) from Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-Based Support Regional Project Funding. The main project goals were to conduct a needs assessment and to disseminate the findings. Part of the funding ($10,000) was earmarked as transitional funding to be used for organizational development. 

1. The Needs Assessment 

The objectives for the needs assessment were described as follows: 

1. To clearly identify the needs of persons infected with and affected by HCV in Manitoba, so that service providers can clearly respond with appropriate information, support, educational opportunities and direction. It will also determine the needs of service providers and how service providers will ascertain the needs of infected and affected persons. 
   
   
2. To develop partnerships with other community based service providers by increasing awareness of the needs of persons living with hepatitis C and their families, and through these partnerships, better respond to those needs.¹⁸ 

In the project performance report (for the period of June 2000 to April 2001), the project's intended outputs and outcomes were defined as follows: 

Conduct a needs assessment for the province of Manitoba: 

• Establish priorities in service development and programming for Manitoba;

• Determine the type of educational resources needed and by whom; 

• Augment knowledge among the infected, affected and health care providers;

• Explore the needs related to co-ordination and partnerships with existing organizations.

Disseminate needs assessment: 

• Make the assessment available to all service providers and community-based health care organizations;

• Further develop and strengthen relationships amongst concerned parties;

• Develop a strategy based on the results.

The needs assessment was conducted between August and December 2000 by a contracted researcher. The study included a literature review, focus groups with both infected or affected people and service providers (conducted in six locations around the province including three in Winnipeg and one each in Portage La Prairie, Brandon and Thompson), and key informant interviews (conducted in-person, by telephone and on the Internet). In all, 102 individuals were involved in the study. The priority areas of need identified included.¹⁹ 

1. Consistent, accurate information about hepatitis C and the liver in user friendly formats;
   
   
2. Liaison and coordination among service providers and levels of service provision;
   
   
3. Education for general practitioners, health care providers and the general public;
   
   
4. Counselling for victims and family members;
   
   
5. Strategies to meet the needs of injection drug users;
   
   
6. Programs, resources and support for incarcerated people, particularly women;
   
   
7. Research on and support for cross-infected individuals;
   
   
8. Research on and support for women with HCV as well as other social issues;
   
   
9. Information and counselling for caregivers;
   
   
10. Staffing, resources and space for both community- and hospital-based programs;
    
    
11. Research on transmission, treatment and a cure; and
    
    
12. More hepatologists and supports for transplant programs.

The needs assessment concluded that the needs in Manitoba also reflected the needs across Canada for: 

1. Information and counselling;
   
   
2. Research, treatment and cure;
   
   
3. More trained health care service providers;
   
   
4. Resources, funding and compensation;
   
   
5. Education to increase public awareness; and
   
   
6. Core funding and support for grass roots organizations.²⁰

Conducting the needs assessment did meet with some opposition, however, and it was described in the report as follows:²¹ 

A number of people want to know why a needs assessment was being done so soon after the environmental scan and saw this as repetitious as the environmental scan had taken a long time to complete. [Comments included]:

1. The suggestion has been made that the Winnipeg community has completed enough needs assessments;
   
   
2. What is going to happen to this information?
   
   
3. How is it going to be used to help HCV infected/affected and service providers?
   
   
4. The same community-based service providers are approached for all infectious, communicable and STD issues.

Despite the perceived overlap between these research activities, the outcome of both these investigative activities was positive. In response to their findings, the Winnipeg Regional Health Authority developed a training module for primary care physicians and nurses on Hepatitis C. The training was accredited by the College of Family Practice Physicians and it will become the national standard for training of family physicians. Also, WRHA developed "Information Guidelines for HCV Testing for Health Professionals" which were also adopted nationally. 

2. Infrastructure and organizational development 

The second part of the funding provided by Prevention and Community-Based Support Regional Project Funding was to be used for infrastructure and organizational development. The objective for the transitional funding was as follows: 

To help the organization strengthen to efficiently respond to the hepatitis C community needs.²² 

The intended outputs and outcomes for this objective included: 

Transitional funding:

• [The] Chapter will increase the capacity to respond to the needs, caring about hepatitis C as a part of the community; 

• Care and treatment to be accessible, provided without discrimination or stigma; 

• Strengthen the organization; 

• Establish an office; 

• Enhance profile in the community; 

• Hire a volunteer coordinator; 

• Establish outreach in northern areas; and 

• Recruit, train and coordinate volunteers. 

In January 2001, a small office space in the Self-Help Clearinghouse was established. Patients attending the hepatitis C clinic at the Health Sciences Centre could easily drop in and access resources or support. For the Executive Director, her dream of increased visibility and professionalism was achieved; however, uncertain funding sources would continue to focus her attention on fund raising. There was no adequate parking available and she still had to move her car every two hours or pay $7.00 per day, a not insignificant out-of-pocket expense for a full-time volunteer. However, even the cramped space was preferable to operating out of her home. 

For some time, the needs of the Manitoba Chapter had been diverging from those of the national organization. With the leadership of the Executive Director, the Hepatitis C Resource Centre, Inc. (HCRC) became an independent, non-profit, incorporated body in September 2001. As one board member commented:

We decided we could serve Manitobans better if we were based here. 

As a Hepatitis C Society Chapter, there was an informal steering committee. With independence, an eight-member board was formalized and yearly nominations and elections were planned. As one client/board member explained: 

Originally there were no criteria for being on the Board - it was just a matter of being concerned and wanting to get involved. However, they are now trying to structure the board so that it will be more useful. 

While at the time of our visit in April 2002 the Board tended to consist of infected individuals, in the fall of 2002, the membership of the board was enhanced to increase the scope of experience, knowledge and contacts. It now includes an HCV research nurse, a hepatologist, a counsellor, a lawyer, a social worker and an accountant, as well as several members with HCV.²³ 

The Board's role is to determine the policies and procedures of the HCRC. It shares the responsibility of running the organization with the Executive Director who has the mandate to be the only public spokesperson for the agency. However, in this tiny organization, it was also a working board. As a client/board member commented: 

We have control over the office, we decide what happens at … meetings, what goes out to the public, fundraising efforts and getting speakers in. 

The Board meets at least once a month and any member can attend. Several committees have been developed including a fundraising committee and a nominating committee. Decisions are generally made by consensus. 

The staff included the full-time but volunteer Executive Director and a part-time employed Volunteer Coordinator who put in additional hours in a volunteer capacity. She was responsible for enlisting volunteers and developing policies and procedures and training programs. At the time of our visit, there were about ten volunteers actively working with the HCRC doing research, answering calls, working on the web page or newsletter, and generally helping out in the office. 

Through a community partnership with Reaching E-Quality, an employment organization working with people with disabilities, a volunteer placement at HCRC was established. The Volunteer Coordinator assessed the individual's special needs and work ethic while the individual provided support for the Centre. As a Reaching E-Quality representative commented: 

This is a win-win situation for everyone involved. The volunteer gets good job experience and a reference.…It is a good fit and gave our clients a good outcome. We highly value this partnership. The positive self-esteem building and the positive work experience is great. 

The HCRC planned to increase the number of volunteers through a volunteer recruitment drive at the University of Manitoba in the fall of 2002 and through a student volunteer program organized by the Department of Education, Youth and Training. New volunteer positions were being developed to provide direct service support, compensation information and to drive clients to their appointments. The Executive Director was able to report that:

Volunteer support for our various displays and other one-day activities has been plentiful and successful.²⁴ 

Although the board had no money for advertising, information spread by word of mouth due to their advocacy work, networking, information sessions and their booklet which had been distributed throughout the province. One board member described their communication strategy as follows: 

We produce a quarterly newsletter that keeps growing; anything important that comes up in between newsletters gets mailed out to all members. New members get sent a starter pack, and the newsletter contains information on upcoming events, new research and stories from members and whatever is happening in the organization, recipes and how members can contribute. 

The communication strategies appeared to be successful. Organizations often approached the HCRC to do presentations. The Centre received a lot of walk-in clients who were referred by the nearby clinic and many calls for information and support were received. As a board member commented: 

The amount of work we do has grown in leaps and bounds. A walk-in can take quite a bit of time (2 or 3 hours), messages build up on the phone and e-mail during that time. We would like another space, other than the one office we have, to deal with these walk-ins. 

The Centre also held monthly group support meetings. Sometimes a speaker was invited to make a presentation. The Executive Director also co-facilitated a support group at Sage House, a street-based agency, and was setting up a harm reduction group. 

Clients who were interviewed during our visit identified accessibility, accurate information and support as the key benefits of the HCRC. Sample comments include: 

She is a phone call away ..... I receive emotional support, literature and guidance. 

[Her] information is very current. They are very accessible. You can call and leave a message on their machine. They send out newsletters. [She] is knowledgeable on drugs and diet updates. 

…a support group for those who are infected/affected. It is a great resource for those people who are struggling and need help. And once again the information that is provided is very helpful and up to date. 

The best thing has been getting acquainted with other people who have hepatitis C. Once I started attending I felt less stigmatized and realized that I could deal with his illness as others there were doing relatively well. 

It was evident that one person could not continue to play the multiple roles fulfilled by the Executive Director and that additional staffing was required. To begin to address this staffing issue, HCRC was looking into the feasibility of providing a counsellor on a fee-for-service basis, based upon clients' ability to pay.

HCRC Accomplishments 

1. HCRC has developed community capacity to address hepatitis C issues 

The role of HCRC in developing community capacity to address issues associated with hepatitis C in Manitoba has been significant. Not only have individuals infected with or affected by the disease been supported and informed, but in addition, advocacy work by HCRC in the community has resulted in observable change. For example, the Viral Steering Committee, established as a result of their advocacy work has had an impact on decreasing wait times for treatment. More recently, the Executive Director was instrumental in establishing a provincial Hepatitis C Coalition. Its mandate, adopted in April 2002, is as follows: 

The Coalition included a wide range of community partners, including: 

The Hemophilia Society		A support organization for persons infected with or affected by hemophilia and other bleeding disorders
John Howard Society		An organization which works with people who have come into conflict with the law
Street Connections		A needle exchange which has a harm reduction focus
Kali Shiva		An HIV/AIDS organization
Mount Carmel Clinic		A community clinic with a focus on hepatitis C and HIV/AIDS
Sagkeeng Health Centre		An on-reserve health centre serving the Sagkeeng First Nation, 145 km NE of Winnipeg
First Nations and Inuit Health Branch, Health Canada		Provides services to on-reserve and northern Aboriginal people
Canadian Liver Foundation		An organization that supports research and education on liver disease
New Directions for Children, Youth and Families		Works with children, youth and families at risk and mainly serves Aboriginal people
Anishinabee Mino-Ayaawin		Works with Aboriginal people on reserve regarding hepatitis C and HIV/AIDS
Stony Mountain Institution		A federal corrections institution

The new Coalition planned to meet on a monthly basis and had already begun to develop proposals for funding from the Province of Manitoba. A public awareness campaign was also planned and the Coalition was looking into emerging needs both in the North and in isolated communities.²⁵ 

This significant achievement went a long way to change the perception in the community that the HCRC focused mainly on issues concerning the population that contracted HCV through the blood system, as had been suggested by the agency's recent evaluation report.²⁶ By September 2002, the Executive Director was able to report:

We are now seen as providing education, support and information to anyone infected with or affected by HCV. There is a greater awareness about the work we do at Sage House … and the resources and services we have for marginalized population (pamphlets on tattooing and body art).²⁷ 

2. The HCRC has developed a broad community role 

The transition from the small, home-based Manitoba Chapter of the Hepatitis C Society which served the needs of individuals infected through the blood system to the incorporated, independent and centrally located Hepatitis C Resource Centre is also a significant accomplishment. A look at agency plans for the fall of 2002 gives an indication of its broadening community role for such activities as offering support off-site, and serving identified target groups such as Aboriginal people and corrections groups: 

• Plans to provide education, information and support to clients at the new Mount Carmel Hepatitis Clinic;

• Offering a workshop to the Community Health Representatives (CHR) General Assembly;

• Offering a one-day presentation to introduce the Hepatitis C Coalition to the CHR president and the West Region Tribal Council Health Department;

• Working with Health Canada and Corrections Canada to plan a harm reduction conference entitled Partners in Caring in Winnipeg, February 5-6, 2003.

Challenges 

1. Sustainability 

Our visit to the HCRC left us with two vivid impressions: the challenge of sustainability for this grassroots organization, and the need for more services in Winnipeg. HCRC has built capacity in a number of different areas including membership, outreach, volunteer training, governance, fund raising and networking and yet the challenge for this little agency is its sustainability because of unpredictable funding. As one client commented: 

They need core funding. With core funding they could get a full time person answering the phone so that when people call they will be able to get the help they need. They also need a counsellor to work with people who have been diagnosed. It would also be helpful if they could expand the Resource Centre as presently it only consists of one small office. It just isn't big enough to be able to really do the job of a resource centre well. 

A board member supported this view: 

The project needs core funding. How are they supposed to help people if they are not given any money to create the infrastructure necessary for this type of work? … [W]e are just beginning to explore … getting access to monies from bingos, lotteries etc. We are also currently working on developing strategies for proposals that will give us access to local monies.

Funding from Health Canada was running out at the time of our visit in April 2002 - the agency had just received its final cheque. A proposal for additional funding had been turned down. They planned to submit another proposal to ACAP (AIDS Community Action Program) in the fall of 2002, but until then, the prospects looked bleak. As the Executive Director commented: 

Somehow, we must use as little money as possible until October. 

2. Lack of access to treatment and support 

At the end of our visit, our other vivid impression was the extent of the need for access to treatment and the provision of care and treatment support in this major Canadian city, as well as in the rural area it serves. As the Executive Director commented: 

I feel that care and treatment is improving but it's not where it should be. It's not gold standard treatment. There's a long way to go.… Everyone around comes to Winnipeg for care and treatment. They do some testing up North but not a great deal. It will put a great burden on the health care system in 10 years. 

All of the primary clients we interviewed commented extensively on three inter-related needs: 

1. Access to hepatologists and treatment;
   
   
2. Education for physicians; and
   
   
3. On-going support to live with this disease. 

As one client summed it up: 

Access is not easy enough, the time it takes to get diagnosed is too long, and then once you have the diagnosis and you start suffering from the symptoms, doctors just are not able to help. 

Concluding Remarks 

There is significant evidence in Manitoba that a number of community partners are beginning to come together to address the issue of hepatitis C. However, despite the capacity that has been built to date, there still appears to be a serious gap in service provision. The HCRC is one small but important player in this mix but its reliance on its volunteer base and its uncertain funding environment draw its sustainability into question. Should the HCRC have to close its doors, who would act as a community catalyst and advocate for the needs of those infected with or affected by hepatitis C in Manitoba?

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

• Project documents from Health Canada 

• Newsletters 

• Copy of resource HCRC developed - Manitoba's Hepatitis C Support Guide 

• Listing of the training workshops completed by staff and volunteers 

• Inventory of the resources HCRC has available for individuals 

• Summary of newspaper clippings where the HCRC is mentioned 

• Notes from the Hep C coalition meeting (April 9, 2002) 

• Documentation on the number of walk-ins, and incoming calls to the HCRC

• Documentation on the number of paid members and the number on their mailing list 

• Project evaluation 

• Project needs assessment 

Most of the primary client interviews were done over the phone while the research team was in Winnipeg. The staff, volunteer, board and secondary client interviews were, for the most part, done in-person. This case study proved to be challenging to conduct because the funded activities for the project were complete. Primarily volunteers run the HCRC and their main focus at the time of the case study was securing funding to continue to operate in some capacity. The main activities they engaged in were meeting with potential funders and writing proposals. 

References 

1. The HeCSC Newsletter. Hepatitis C Society of Canada. Vol. 6. No. 2. Summer 2000.
   
   
2. Manitoba Health Website http://www.gov.mb.ca/health/hcv/mhcap.html, April 3, 2002.
   
   
3. Manitoba Health Website, http://www.gov.mb.ca/health/, retrieved April 3, 2002.
   
   
4. Manitoba Government News Release, July 18^th, 2001, http://www.gov.mb.ca/chc/press/top/2001/01/2001-01-18-01.html, MANITOBA EXTENDS EXTRAORDINARY ASSISTANCE TO HEPATITIS C PATIENTS: CHOMIAK. Retrieved April 3, 2002.
   
   
5. Health Canada Health Promotions and Programs Branch, Hepatitis C Disease Prevention, Community-Based Support and Research Program Community Priorities Setting Meeting Summary Report - Manitoba. Prepared by Jennifer Howard, January 2000.
   
   
6. The Manitoba Hepatitis C Community Based Support Profile. Prepared by Lynn Skotnitsky, March 2000.
   
   
7. Manitoba Health, Centres for Disease Control, Reportable Diseases Manitoba, CDC Annual Review, Year 2000, December 2001.
   http://www.gov.mb.ca/health/publichealth/cdc/surveillance/reportable2000.pdf
   
   
8. Government of Manitoba. Population of Manitoba By Regional Health Authority, Place, Age, Group and Sex. June 1, 2001.
   
   
9. Manitoba Health, Centre for Disease Control, Reportable Diseases Manitoba, CDC Annual Review, Year 2000, December 2001.
   http://www.gov.mb.ca/health/publichealth/cdc/surveillance/reportable2000.pdf
   
   
10. Aboriginal People in Manitoba. Human Resources Development Canada. 2000 with reference to 1996 Census data. P. 83.
    
    
11. Government of Manitoba, Epidemiology Unit, Public Health, Manitoba Health. The Winnipeg Injection Drug Epidemiology (WIDE) Study: A Study of the Epidemiology of Injection Drug Use and HIV Infection in Winnipeg, MB. Principal Invistigators; Lawrence Elliot, MD., M.Sc., FRCP & James Blanchard, MD., MPH, Ph. D.
    
    
12. The HeCSC Newsletter, Manitoba Chair in Hep C announced. Vol 6, No2. Summer 2000. Pg. 10
    
    
13. HeCSC Website http://www.hepatitiscsociety.com/
    
    
14. Executive Director, Hepatitis C Resource Centre, Inc. April 22-24, 2002.
    
    
15. Funding Approval Form, January 3, 2000.
    
    
16. Evaluation Report. Project: "Needs Assessment of Infected-Affected People in Manitoba" 2000-2001. Hepatitis C Resource Centre, Paula Milgaldri. April 2002.
    
    
17. Laura E. Taylor. The Manitoba Hepatitis C Needs Assessment-2000. Winnipeg, Manitoba. December 19, 2000.
    
    
18. Project report: Hepatitis C Society of Canada, Manitoba Chapter, Needs Assessment. December 2000.
    
    
19. Adapted from Project report: Hepatitis C Society of Canada, Manitoba Chapter, Needs Assessment. December 2000. pp. 42-50.
    
    
20. Hepatitis C Society of Canada, Manitoba Chapter, Needs Assessment. December 2000. p.50.
    
    
21. Project report: Hepatitis C Society of Canada, Manitoba Chapter, Needs Assessment. December 2000. p. 44.
    
    
22. Project report: Hepatitis C Society of Canada, Manitoba Chapter, Needs Assessment. December 2000.
    
    
23. Personal correspondence. September 23, 2002.
    
    
24. Personal correspondence. September 23, 2002.
    
    
25. Personal correspondence. September 23, 2002.
    
    
26. Evaluation Report. Project: Need Assessment of Infected-Affected People in Manitoba 2000-2001. Hepatitis C Resource Centre. April 2002.
    
    
27. Personal correspondence. September 23, 2002.

 

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