Resource Library

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

Case Study:
Hepatitis C Foundation of Quebec (Verdun)/Fondation de l'hépatite C du Québec
Montreal, Quebec

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The Hepatitis C Support Group of Greater Montreal 

In the summer of 1998, a rally was held for the victims of hepatitis C in Shawinigan, Quebec. Two women met there, one infected with hepatitis C, the other affected by it, and began to discuss their needs. Soon after the march, they got together in the Montreal suburb of Verdun. Sitting at the kitchen table, they decided to start a support group. As one of them commented: 

We based the project on our personal experiences. In 1991, the doctors said to me that nothing could be done. I tried to find some answers, and I was frustrated when I was trying to find some information. 

They called the support group the Hepatitis C Support Group of Greater Montreal and operated it out of the home of the Executive Director. In a short period of time, the group caught the interest of many people dealing with hepatitis C and began to grow, as they recalled later, "like a mushroom." As a Board member commented: 

It is hard to communicate with people who have hepatitis C. They feel they have nobody to talk to, nobody to share their problems with. A lot of people will only talk to somebody who also has hep C. They think that only people with hep C will understand and will know what it's like to have it. 

Realizing the increased need for support, as well as lack of information available about the disease, they considered the possibility of starting a chapter of the Hepatitis C Society of Canada because they knew someone in that organization. However, at the last minute, they decided to create their own organization. As the Executive Director explained: 

The Hepatitis C Support group organized a meeting with the Hepatitis C Society of Canada's representative who was to come to Verdun to meet the Board and approximately 20 people to teach us how to start a Chapter of the Society. However, two hours prior to the scheduled meeting, the Society cancelled. That is why we decided to create our own organization, and any monies we obtained from memberships would stay within our own group. 

Context 

In 2001, Quebec had a population of slightly over 7.4 million, with nearly half of those residents living in the Montreal metropolitan area. In 1999, Quebec had a rate of newly reported cases of hepatitis C of 46.2 per 100,000 population which is lower than the national rate of 63.6 per 100,000 population.¹ Quebec residents who were infected with HCV by a blood transfusion between 1986 and 1990 are entitled to compensation through the national settlement. For individuals infected before 1986 and after 1990, the federal government provided a transfer of funds to the Province of Quebec for infected individuals' clinically indicated medical care, regardless of the date of their infection. On May 6, 1998, the Province announced a $75 million compensation package for victims of the blood system who were ineligible for the national settlement.² The Quebec Government also provides brochures in both French and English about hepatitis C and provides comprehensive information on treatment, prevention, transmission and compensation on its web page.³ 

In January 2000 in Quebec, Health Canada conducted an environmental scan to determine the community response to hepatitis C.⁴ Only half of the 35 community-based agencies polled mentioned that HCV was part of their agenda for 1999-2000. Half of the agencies worked on issues associated with HIV/AIDS; the rest provided help to high risk populations such as street-involved youth or youth in general, hemophiliacs or those receiving transfusions, the homeless, drug users, or Aboriginal people. Only three organizations made HCV the focus of their work and specifically offered activities and services for people living with HCV - and one of those agencies is the subject of this case study. 

In 2001, the Montreal metropolitan area had 3.4 million inhabitants; 1.8 million of them were served by the central health region known as the Région de Montréal-Centre -outlying suburbs are served by different health regions. Hepatitis C rates for Montreal were not available but the city has a large population of people who inject drugs and other at-risk populations. 

South of downtown and on the St. Lawrence River, the Arrondissement de Verdun consists mainly of working-class families, although the Ile des Soeurs area is home to several large service sector industries and desirable river-view townhouses and apartments. In 2001, the population was 60,564; 70% spoke French and 24% spoke English as their preferred language. About 11% of the population were immigrants. Of families with children, 42% were single parent families, and of these, 86% were headed by women.⁵ A staff member at the nearby Dawson Community Centre suggested that a significant number of these young mothers were using drugs and having unprotected sexual relations. 

The Development of the Hepatitis C Foundation of Quebec (HCFQ) 

On November 5, 1999, the Hepatitis C Support Group of Greater Montréal became incorporated as a non-profit organization, The Hepatitis C Foundation of Quebec (HCFQ)/Fondation de l'hépatite C du Québec. It was the first organization of its kind in Quebec devoted solely to those infected with or affected by the HCV virus. 

While the HCFQ did not conduct a needs assessment, they estimated the extent of need based on the calls they received from what they termed "very sick people", their family and friends who were looking for support, advice, information or just to be able to talk to someone who understood the problems associated with hepatitis C. They received approximately 20 calls a month from new individuals. About one-third of these were newly diagnosed cases. 

Agency staff and other stakeholders we interviewed identified other programs and organizations in the community that provided support for victims of hepatitis C or offered prevention information. These included: 

• Santé publique de Montréal
  Offered an integrated prevention program for STDs, AIDS and hepatitis C as well as a university course on the biological aspects of these diseases; 

• Schering Canada
  Provided free interferon and Rebetron® treatment to patients who could not afford it and provided physicians with information; 

• Ruban en route
  An HIV/AIDS public awareness program in secondary schools and help line that added hepatitis C information to their program in 2000; and 

• Travail de rue/Action communautaire
  A non-profit working with street-involved youth which is offered on site in bars, alleys, the Metro and other locations where they congregated.

When we asked HCFQ clients if there were other services for individuals infected with or affected by hepatitis C, they were only aware of a few other services. One mentioned the Canadian Liver Foundation as a resource. Another had been recommended to a hospital psychiatrist or psychologist; however, when he actually asked for service, he never received a reply. One had been to see a social worker at the CLSC but commented that the social worker knew very little. 

Generally, the Foundation was their main source of information and for them it filled a serious gap in local services. As one client commented: 

The Foundation is the only organization around. And it is bilingual. 

Strengthening the Hepatitis C Foundation of Quebec Project

In the same month that it was incorporated, the HCFQ submitted a proposal to Health Canada's Hepatitis C Prevention, Support and Research Program for Prevention and Community-based Support Regional Project Funding for a project entitled Strengthening the Hepatitis C Foundation of Quebec. As the proposal fit with the region's plans to target prevention and awareness of HCV in street populations, incarcerated individuals and people who inject drugs, the proposal was approved. Funding of $118,000 was received for the period from January 14, 2000 to March 31, 2002, as follows: 

1999-2000: $25,000
2000-2001: $53,000⁷
2001-2002: $40,000 

The goal of the project was to develop further the Foundation's activities and structures, thus aiding it to fulfill its mission. Four main project objectives were formulated: 

1. Structuring the organization (membership development; diversifying and increasing funding);
   
   
2. [Providing] education and awareness-raising about hepatitis C (production of communication tools, distribution of educational and promotional materials, media campaign, ensuring collaboration and representation);
   
   
3. Offering capacity-building and training (ensuring the development of a better understanding of HCV among health care workers); and
   
   
4. Developing the team (staff training; setting up and training a team of volunteers).

A fifth objective was later added:

5.  [Providing] support and mutual self-help for people infected and affected
     (organizing support groups and offering telephone support).⁸

In their application, the Foundation indicated that it would address identified needs in the following manner: 

• We will promote wellness by encouraging people to live a healthy lifestyle; for example avoiding alcohol and illicit drugs, maintaining a nutritional balanced diet. We will highlight the importance of reducing stress in the lives of hepatitis C infected and the necessity of keeping a healthy mental attitude. 

• We will address personal health practices by supplying literature, holding information meetings and speaking to those infected with or affected by hepatitis C. 

• We will direct them (HCV infected people who lack personal income to sustain themselves in regards to medication, housing, food, etc.) to the proper social services that can be of benefit to them. We would like to work with other charitable organizations to address these problems, i.e., social services, CLSCs, food banks, etc. 

• [We will offer] support meetings as an outlet for those who are ostracized to become involved and support others that are infected with or affected by HCV. 

• A therapist will be able to assess the needs of the individuals and guide them through their problems (by instilling various) coping skills.⁹ 

The Foundation's energies were completely focused on hepatitis C issues. They offered counselling, a support group, and awareness and prevention information and targeted a broad range of clients on all issues associated with hepatitis C, including:

• Infected/affected and co-infected individuals; 
• Transplant patients and those awaiting transplantation; 
• Prisoners and ex-prisoners; 
• Youth and street-involved youth; 
• Young mothers; 
• People who use drugs; 
• Professionals, including physicians, pharmacists, health care workers and community workers; and 
• Linguistic groups (English and French), Aboriginal people and ethnic minorities. 

As the project's Progress Report commented: 

People infected with HCV have a feeling of hopelessness because they are suffering from a chronic illness and have no idea what lies ahead in their lives, or if they will have a life. The Foundation's support for infected people advocates that they are not going to die tomorrow, that treatment options are available and [it] also gives people encouragement not to give up. 

The Foundation developed a very supportive atmosphere. Infected and affected individuals were invited to attend meetings to acquire the knowledge needed to cope with the illness. The interaction between infected individuals often developed into friendships and buddy systems. Affected individuals gained a better understanding of the problems of the infected person and this created a more comfortable home or work environment. The Foundation allowed for drop-in or scheduled visits where an infected/affected person could receive individual support and information. 

Some HCV infected people needed help at home to perform daily tasks such as food preparation, shopping and cleaning. The Foundation addressed this issue by directing them to the appropriate community resource, such as the CLSC. The Foundation's president, who was a registered nurse, made home visits to teach patients how to take their medications properly. She often took on the role of a social worker and assessed the situation and capabilities of the individual, referring them to the correct organization to have their needs met. 

Some patients awaiting transplantation needed information about what to expect after receiving their organ and the Foundation sent them information. Those who had received a transplant often needed support. As the project's Progress Report explained: 

Some are fearful that HCV will again raise its ugly head and attack their new liver. Some are unaware that treatment options for HCV exist after receiving their donated organ. We try to encourage transplant HCV carriers to take one day at a time, avoid stress, and to get involved in the support of others, especially those awaiting transplantation.¹⁰ 

In March 2001, the Foundation moved to its new location, a double storefront office a few blocks from Verdun's main street in an old, working class neighbourhood. The space was divided in two, lengthwise, with two large store windows in front and two front doors. The long narrow area on the right hand side had a table for meetings, a small area to display brochures, the Counsellor's desk and a kitchenette, all lined up behind each other. At the back was a very small washroom. Near the front was an opening into the other side of the office. This area had the Administrative Assistant's desk, filing cabinet and fax machine, behind it the Executive Director's desk and at the back a table used to prepare mail-outs. Although the staff were happy to have a public space at last, they were well aware of the space's limitations, including a lack of privacy for support groups and counselling. 

The Executive Director, as one of the two founders, had been with HCFQ since the beginning but she was now a salaried employee and worked full time. Her primary role was to make sure that infected and affected clients received the services they needed. She supervised staff; worked with the Board and partners; provided individual support (particularly to English-speaking clients); wrote proposals and reports; did the accounting; and looked for funding. The Counsellor was also full time and had been with the Foundation since February 2001. She facilitated and coordinated support meetings, provided individual support (particularly to French-speaking clients), and recruited volunteers. During our visit, we noted the many calls she received for information and support. The part-time Administrative Assistant, hired in April 2001, looked after the clerical work, coordinated materials and supplies, maintained the files, membership lists, partner and physician lists, and volunteer roster, and also looked after mailings. 

There were four members on the Board, including the President who was the other agency founder. They were elected at the annual general meeting for a two-year term. Rather than representing a specific stakeholder group, Board members were volunteers who got involved because of their interests, availability and time. Their role was to ensure that the administration of the Foundation was carried out and that the needs of people with hepatitis C were met. There were two sub-committees, the Fundraising Committee and the Information Support Committee, in charge of awareness, conferences, and support groups. 

The Foundation had 28 volunteers. In the 2001-2002 year, they contributed 450 volunteer hours visiting shut-in members at their homes, driving members to medical appointments, providing translation, selling tickets, distributing brochures, answering phones and helping out with clerical duties. They were recruited primarily by word of mouth and training was provided informally as needed. 

Through extensive fundraising activity, the Foundation was able to augment its resources by over $50,000 as shown below: 

HCFQ Budget Sources and Funding¹¹ 

	Health Canada, Hepatitis C Prevention, Support and Research Program, Prevention and Community-based Support Regional Project Funding	$118,000
	Heritage Canada	$25,000
	Schering Canada	$17,346
	GlaxoSmithKline	$500
	Fundraising (various)	$8,351

As the Foundation's project evaluation report stated: 

This is a significant accomplishment for the organization, especially considering that it had raised only $1,500 prior to the commencement of the project.¹² 

In addition, a number of significant in-kind donations were obtained as well, including a computer, meeting space, educational videos, a bilingual dictionary, radio announcements, website support, at-cost printing and translation services, valued together at over $9,700. 

Strengthening the Hepatitis C Foundation of Quebec: Project Accomplishments 

1. Improved community access to care and treatment support 

One of the main accomplishments of the Foundation was the improved access to care and treatment support for those infected by hepatitis C in the community it served. Over the funding period, the Foundation worked hard to increase its membership which grew from 57 to 129.¹³ The needs of members were severe indeed; the Project Coordinator commented: 

People need a supportive environment....The people on treatment need a lot of help. There is a greater chance of suicide if they are alone. 

This sense of isolation was supported by the comments of Foundation clients. When they were asked how hepatitis C had affected their lives, typical responses included: 

Hepatitis C created havoc in my life. I use to work in construction. Now I live on social welfare and I am infected. I feel very anxious and I don't know what to expect next. (our translation) 

I thought I was going to die. This is why I decided to go on treatment. I had limited chances of success because I had cirrhosis of the liver. Treatment has been successful but I still have cirrhosis. It's like life has come to a halt and taken another direction. 

Death ... not being able to complete my life. I have no wonderful outlook on life. I will soon need a liver transplant but I have a rare blood type. Therefore, my chances of finding an organ are even smaller. I constantly have to live with doctors and hospitals. That's not a life. 

They repeatedly mentioned the support they had received from the Foundation and how it had helped to break their sense of isolation, particularly in dealing with the issues associated with treatment. They were eloquent in describing how their needs had been met: 

I have been attending the support group meetings on Wednesdays for the last 3 to 4 months. It really helps me. It is essential for me. Without these meetings, I would feel very much alone. (our translation) 

The first time I came, I had been on treatment for one year. I regularly attend the meetings. I was alone, isolated and treatment was hard on me. (our translation) 

When I'm feeling down and low, I can always talk to someone at the Hepatitis C Foundation.... Sometimes, I can't go to the group session because I'm too tired and they accommodate me on the phone instead. I appreciate almost everything the Foundation offers. If I call and ask for something, they are always ready to help. I am also a cancer patient and they have been very supportive. They sometimes mail things to me. 

The Executive Director expressed her satisfaction with the way that the Foundation had been able to provide this needed support: 

I know we saved lives - we've received suicide calls. We help them and they feel they are not alone. We allow people to share their experience, to help each other. 

In addition, the Foundation also provided support to those affected by hepatitis C. As the Project Coordinator explained: 

The caregivers need help. It is very difficult to take care of people with hepatitis C. The caregivers need to take time for themselves. 

Typical comments included: 

For my friend it helped to demystify a lot of things. (our translation) 

My family benefited from the services provided. Here there is a lot of information on the disease - but 90% of physicians are not aware of it. (our translation) 

2. Improved access to information about hepatitis C 

As well as being their main source of support, the Foundation was often their only source of information: 

There is no other place to go. It is a wonderful group. I get information and help from the Hepatitis C Foundation of Quebec. This project improves the life of people. 

This mainly francophone, mainly working class population had additional problems accessing information about hepatitis C. Most information was only available in English, and much of it was only on the Internet. As one client commented: 

On the internet, there is a lot of information. If you don't have internet your access to information is limited. However, the internet is not always the best - companies try to sell you things and a lot of material is in English or American in content. (our translation) 

The Foundation was able to prepare a detailed information guide for those infected with hepatitis C which was available in both French and English. The Executive Director explained: 

The documentation in our pamphlets is based on our own knowledge and reviewed by nurses and Schering. We also had good information from BC and the USA. Health Canada and the provincial health department provide us with information. The types of information we primarily use are the basic facts about hep C, how the disease is spread. 

Over 20,000 copies were distributed across the province to approximately 500 CLSCs and clinics, six hospitals, 13 community organizations and a few correctional facilities. As well, 30 copies were provided to Health Canada. HCFQ also established a bilingual website in September 2000 and, as of April 2002, it had received 2,155 hits.¹⁴ As one client observed:

At the Foundation, it is easy to get information. If the Foundation does not have the information I need, they find it. (our translation) 

While this support was definitely an improvement, Foundation staff saw how much more there was to be done. As one commented: 

People are glad when they have answers. It is like a light at the end of the tunnel. They don't feel lonely anymore. They'll say something like: "Now I know what it is," but they want more than what they have. Information is missing everywhere. 

Other communication tools were targeted at public awareness. These included: 

• Posters - approximately 90 posters distributed to the cities of Verdun, Quebec, Lévis, and Valleyfield as well as to the Laval penitentiary; also distributed at the First Canadian Hepatitis C Conference. 

• Four pamphlets (available in English only) on HCV and drugs, HCV and pregnancy, HCV and Sexually Transmitted Diseases (STDs), and HCV and the beauty myth, produced in collaboration with a Vancouver group. 

• A bilingual Foundation bookmark - 4000 distributed to HCFQ members, contacts and various organizations; and 

• A new corporate logo, letterhead paper and business cards. 

In addition, the Foundation advertised in the local newspaper, as well as on TV and radio. Three interviews with Foundation staff were aired on the Mohawk radio station. The Executive Director made several speeches, including one at the First Canadian Conference on Hepatitis C where the Foundation also provided an exhibit. As a result of all this publicity, the Foundation received many phone calls asking questions and requesting further information.¹⁵ 

3. Building capacity for local support groups 

Another major accomplishment for this small agency related to building capacity, particularly by fostering the development of local HCV support groups. The Foundation worked with local CLSCs, clinics and community organizations to identify individuals who might be interested in starting a group. Once identified, the Foundation provided advice and encouragement and when the new group was ready to hold its first meeting, staff members co-facilitated the meeting and trained the local leaders. Then they remained available for consultation, information, and support. The Foundation produced a manual, called How to Start a Support Group. As well as providing the manual to interested individuals, 30 manuals were distributed at a Health Canada meeting. 

By the fall of 2001, two new support groups had been established. In Hull, there are a large number of people who use intravenous drugs. Libération II, a drug abuse prevention and intervention centre in the Outaouais area, contacted the Foundation for help in the development of a support group. The group was pleased to know that the Foundation worked with all people no matter how the disease had been contracted. A FHCQ staff member attended a Libération II Board of Directors' meeting to explain how the Foundation addressed the needs of infected/affected people. A support group was established and began to meet on a bi-monthly basis.

The Foundation also was contacted by a Sherbrooke area social worker who took great interest in providing social support for hepatitis C patients. That meeting gave the Foundation the opportunity to assist in the development of a support group in Sherbrooke, known as Les Grands Coeurs d'Artichauds. Staff worked closely with this group by sharing literature, information and educational videos. This group met monthly.¹⁶ 

At the time of our visit, the Foundation had begun to work with two additional groups, Le Mouvement d'information, d'éducation et d'entraide dans la lutte contre le sida (MIENS) in the Saguenay-Lac St-Jean area, and a fourth group in St-Jerome [no name provided], giving them information about how to set up a HCV support group. 

The Foundation also targeted professional development. It provided 100 educational packages on hepatitis C for physician training at the Régie régionale de la santé et des services sociaux de Montréal-Centre. It also offered training sessions at several hospitals including two sessions offered for physicians at Ste-Justine's Hospital, one for medical staff at the Verdun General Hospital, and three for emergency nursing staff at the Montreal General Hospital. The Foundation also provided information kiosks at professional conferences to further health care workers' knowledge of hepatitis C.¹⁷ Staff also provided training to workers at the Dawson Community Centre on tattoos, safe sex and other harm reduction topics so that they could provide information to their clients. 

4. Supporting partnerships 

The Foundation had also worked very hard to support partnership and collaboration on hepatitis C issues in the community. A Board member commented on the importance of partnerships as follows: 

We definitely have partnerships - otherwise, we wouldn't be able to reach as many people. 

Key partners included: 

• Dawson Community Centre
  Provided free meeting space. Encouraged continued education to young people about the dangers of tattooing, body piercing, safe sex, and drug usage. Invited the Foundation to give a workshop to young mothers on hepatitis A, B, and C. 

• Régie régionale de la santé et des services sociaux de Montréal-Centre
  A physician worked with the Foundation to identify an infected mother to sit on the advisory board of the Society of Obstetricians and Gynaecologists of Canada (SOGC) to aid with the writing of the national guidelines for obstetricians and gynaecologists. He also operated a kiosk at the Régie's medical staff training; and found volunteers infected with HCV who were interested in being involved in the production of an awareness video about the disease. 

• Travail de rue/Action communautaire (TRAC)
  The Foundation worked closely with this group to teach street workers who work with street-involved youth and people who use IV drugs about HCV and its complications. TRAC disbursed Foundation literature and specific joint publications for their clientele were planned. They also planned to collaborate on workshops for the workers.

• Quebec Transplant Association
  In collaboration with the Canadian Kidney Foundation, invited HCFQ as a consulting partner by operating a kiosk in the Organ and Tissue Donation Awareness Campaign in April 2002. As hepatitis C is the main reason for liver transplantation, the Foundation supports their efforts toward organ donation. 

• The Montreal General Hospital
  Presented Foundation literature to patients and often referred them to HCFQ. Donated meeting space. 

• LaSalle Education Board, Adult Education
  The Foundation was developing a partnership to allow adult students to work on job training in the HCFQ office, giving students the opportunity for skill development in a community setting to prepare them to return to the workforce.¹⁸ 

Many other community partners disseminated information produced by the Foundation, referred clients or exchanged information. These included: 

• Ruban en route
  Included literature in their school-based safe sex workshops; 

• Hospitals in the Montreal area
  Presented literature to patients and often refer them to the Foundation; 

• Commissaire au développement local
  A business development association that introduced the Foundation to the local business community. Arranged to have articles about the Foundation written in the local newspaper; 

• Centre de ressources et intervention santé et sexualité (CRISS)
  Mutual information sharing and referral; 

• Fybromyalgia Support Group, LaSalle
  Mutual information sharing; provided a guest speaker for the Foundation's support group; 

• Fondation Farha
  Provided information on co-infected; 

• Fondation Laurent Pontbriand
  Mutual support and campaign planning; 

• L'Organisation d'entraide et d'information sur l'hépatite C (OEIH "C" Québec)
  Mutual support and campaign planning; 

• Spectre de rue Montréal
  Street workers disseminated Foundation materials; 

• Montreal General Blood Bank
  Information exchange; and 

• Canadian Association of Hepatology Nurses
  Membership through the Foundation president. 

Challenges

In their interviews, clients, staff and stakeholders identified the many challenges which still surrounded a response to HCV. Three themes emerged from their comments. 

1. Stigma associated with the lack of awareness about hepatitis C 

Foundation clients mentioned many times the problems they had encountered with discrimination, fear, shame and rejection. As one community stakeholder commented:

The psychological challenge is an important barrier. Several people are in shock when they find out they have hepatitis C. The anxiety is the worst. There is also shame because hepatitis  is associated with use of drugs. (our translation) 

Individuals encountered stigma at work: 

It has been very bad. You don't have the energy to go out. If employers know that you have it, you can't work. You don't have much of a life. 

They also encountered problems at home: 

My relationship with my partner is difficult. (our translation) 

They saw the stigma as being tied to a lack of awareness or understanding about hepatitis C on the part of the public. All of the groups interviewed had suggestions about who needed greater awareness; from the general public, to high school students, to special populations such as tattoo artists and street workers. 

2. The need for more services 

Clients had experienced a lack of support in many areas. One mentioned several times was Social Services. As one client described his experience: 

During treament, social assistance asked me to work. I had a lot of problems with social assistance. (our translation) 

The Executive Director suggested: 

People with hepatitis C should be recognized by Social Services as having a disability. They would then receive more money when they are on welfare. 

One of the community stakeholders explained that there was a need, not only for specialists, such as hepatologists, but also for more global support from general practitioners and other service providers: 

One of the biggest challenges faced by a person infected with hepatitis C is to find someone who will address the infection in a global way: absenteeism, death, fatigue are examples of issues which come up. It should be the role of family physicians. 

In a lot of cases, 90% of  the life of the infected person is spent outside of medical treatment - but other services are required to cope. (our translation) 

The Executive Director added Home Support Services to the list of needs: 

We need home care for people who live alone and have problems with daily activities such as doing the groceries, cooking, etc. 

3. The need for program sustainability and development 

HCFQ had accomplished so much in a short time. As a Board member commented: 

We have a sense of self-satisfaction when we help people. We are a small team and we're proud of where we are now. We still have a long way to go. When we look back, it's amazing how far we've come. We started with holding meetings in a kitchen, and four years later we have an office and some staff. I realized that when we really believe in what we do and when we see a need, we get somewhere with a tight group.... There are still a lot of people who need help.

The Foundation had many plans for development; however, at the time of our visit in April 2002, the last cheque from Health Canada had been received and there was no new funding on the horizon. As the Executive Director explained: 

Presently, there is no paid staff because we ran out of funds. We are all working on a volunteer basis. 

Two and a half years previously, the Foundation had submitted an application for accreditation to the Ministère de la Santé et des Service Sociaux du Québec. Until it had a charity registration number it could not solicit donations from corporations that required a tax receipt. A new pamphlet and a tax receipt form had been prepared but were on hold until the registration number was received. Fundraising ground to a halt. By April 2002, the situation was very grave. The Executive Director explained: 

It's been a constant struggle for the past two years even though we have a lawyer helping us. Without this number, we may very well have to close our doors because it is practically impossible to do significant fundraising. 

Finally, on May 18, 2002, the Foundation received its registration number so that it was at last able to produce federal tax receipts - only to discover that they also needed a similar number from the provincial government and that they would have to go through another application process. By September, it seemed certain that the Foundation would lose their office. However, despite her intense frustration, the Executive Director was still able to laugh, if a little bitterly: 

I can only tell you that I never had a job with so much satisfaction [and] gratification from people, even if it is the lowest paying job I ever had! 

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

• Project documents from Health Canada 

• Hepatitis C Community-Based Support Project Funding Application to Health Canada submitted in November 1999, pp. 9-10 

• Hepatitis C Prevention and Community-Based Support Project Progress Report Submitted to Health Canada in September 2001 

• Quarterly Activity Report from January 1st, 2001 to March 31st, 2001 

• Hepatitis C Foundation of Quebec Mid-Project Evaluation, February 2001 

• Hepatitis C Foundation of Quebec Final Project Evaluation, April 2002 

• Job descriptions

• The Hepatitis C Foundation of Quebec resources including pamphlets, bookmark, ribbon and pin 

• Letters of support for the Hepatitis C Foundation of Quebec's funding proposal to Health Canada 

• Hepatitis C Foundation of Quebec Information Guide (both English and French versions) 

• Hepatitis C Foundation of Quebec Starting a Support Group Guide (both English and French versions) 

• Employment Agreement 

• Confidentiality Agreement 

• Program Implementation and Outcome Achievement Survey 

References 

1. Health Canada Notifiable Diseases Annual Summary 1999. Canada Communicable Diseases Report, 2001.
   
   
2. HepNet, Press Release, May 6 1998, Bouchard offers more for blood victims. http://www.hepnet.com/hepc/news50698.html
   
   
3. Government of Quebec Website, Ministry of Health and Social Services, 2000 http://www.msss.gouv.qc.ca/f/sujets/hepatitec.htm
   
   
4. Situation Report: Hepatitis C in the Province of Quebec. Yves Jalbert. Health Canada, Health Promotion and Programs Branch. Quebec Region. Hepatitis C Division. January 2000.
   
   
5. Profil socio-économique de l'arondissement Verdun. November 2001.
   
   
6. Hepatitis C Community-based Support Project Funding Application Form, March 2000. p. 3. NB. One objective was removed in order to get charitable status, "To serve as an advocacy group on behalf of patients and their families."
   
   
7. This amount was originally $40,000 but was augmented by $13,000 to create two manuals: How to Start a Support Group and Information Guide on Hepatitis C.
   
   
8. Hepatitis C Foundation of Quebec. Mid-project Evaluation. February 2001. p. 2.
   
   
9. Hepatitis C Community-Based Support Project Funding Application to Health Canada submitted in November 1999. pp. 9-10.
   
   
10. Hepatitis C Prevention and Community-Based Support - Project Progress Report, September 2001.
    
    
11. Hepatitis C Foundation of Quebec. Final Project Evaluation. April 2002. p. 5.
    
    
12. Hepatitis C Foundation of Quebec. Final Project Evaluation. April 2002. p. 5.
    
    
13. Hepatitis C Foundation of Quebec Final Project Evaluation, April 2002, p.4.
    
    
14. Hepatitis C foundation of Quebec Final Project Evaluation. April 2002. pp. 7-8.
    
    
15. Hepatitis C Foundation of Quebec Final Project Evaluation, April 2002, pp. 7-8.
    
    
16. Hepatitis C Foundation of Quebec Final Project Evaluation, April 2002, pp. 11.
    
    
17. Hepatitis C Foundation of Quebec Final Project Evaluation, April 2002, pp. 10.
    
    
18. Hepatitis C Prevention and Community-Based Support - Project Progress Report, September 2001.

 

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