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

Case Study: Lethbridge HIV Connection
Lethbridge, Alberta

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The Development of the Lethbridge HIV Connection Society 

Lethbridge HIV Connection Society (LHC) resides in Rylands House, an 85-year old two-storey clapboard house in the historic London Row district of Lethbridge (population 72,717), not far from downtown. The old trees, gardens and front porches of this spacious residential area welcome you and provide a sense of continuity in this sunny, windswept city located on the high plains of southwestern Alberta. The house was purchased in 1998 to offer clients a comfortable and confidential environment. The Board also saw advantage in owning the site rather than using a rented facility. 

LHC is a non-profit organization with a mandate to create a compassionate and effective community response to HIV and Hepatitis C through support and education. It serves the Chinook Health Region, covering the entire southwestern corner of Alberta, including two large reserves for the Blood and the Peigan Nations as well as the urban area of Lethbridge. Nearly 11% of Aboriginal people in Alberta live in this region. 

The agency was founded in 1986 by a group of concerned individuals, including members of the gay community and representatives of various health and social service agencies and was registered as a non-profit charitable organization under the Societies Act of Alberta in 1988. At that time it lost some of its grassroots character and some of its gay supporters left, not wanting to be openly associated with an AIDS organization in this small, conservative community.

In the mid-nineties, the clientele was mainly middle class males with no indication of drug problems but by 1997 there were a few clients who were IV drug users. At that time, hepatitis C (HCV) was still largely unknown. However, by 1999, the rate of newly diagnosed cases of HCV reported in the Chinook Health Region was 58.4 per 100,000 (slightly less than the national average at that time of 63.6). Fifty-eight% of the newly diagnosed people indicated that they injected drugs; nearly half reported having some body piercing. The reported cases were primarily Caucasians (80%) while 12% were Aboriginal/Metis.¹

Other high risk groups for HCV represented in Lethbridge and the surrounding rural area include inmate populations, homeless and street-involved intravenous drug users, sex trade workers, migrant seasonal farm workers from other countries (particularly Mexico), youth and postsecondary students with high risk behaviours, and athletes who could be using performance enhancing IV drugs or steroids.²

LHC is one of the few places in the community that people can get information about hepatitis C. Other sources of information and support include: 

• Lethbridge Regional Hospital - an outpatient nurse devotes eight hours per month to issues associated with hepatitis C such as providing support for individuals who are going through treatment;

• Lethbridge Regional Health Authority - all positive HCV test results are investigated; referrals are made primarily to LHC and/or the John Howard Society;

• Lethbridge Corrections - can provide a transfer to an Edmonton institution if treatment is required;

• TRAC youth outreach program - primarily makes referrals to LHC.

This shortage of information and support is reflected in a comment from the Chief Medical Officer for the Chinook Regional Health Authority: 

[I] estimate that we have identified only half of the individuals believed to be infected in the Lethbridge area. We are not doing as much about hep C [hepatitis C] as I would like, but we don't have the infrastructure or the experience to do more. 

At the time the case study was conducted, there was a gastroenterologist in Lethbridge who was treating some patients with hepatitis C but individuals had to travel to Calgary or Edmonton to see a hepatologist. The only methadone clinic in the province was located in Edmonton. 

Project History and Implementation 

The evolution of this HIV/AIDS-driven agency to respond to the emerging need for HCV services is an interesting example of agency responsiveness. LHC is currently in receipt of its third round of funding from Health Canada's Prevention and Community-based Support Regional Project Funding and it is how the agency used this funding that is the subject of this case study. However, the development process leading up to this contribution is also instructive. 

a) 1999 - NPNU Outreach Project

In 1999, LHC received $3,500 from Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-based Support Regional Project Funding for a program entitled NPNU Outreach. Its purpose was to support people who injected drugs by protecting and improving their health in matters relating to hepatitis B, C and HIV. Planned project activities for this small sum were very broad and included community training on hepatitis C prevention and education, pre/post-test counselling to HCV clients, lifestyle counselling, assistance in accessing hepatitis C services, outreach services, assessment, STD testing, and a needle exchange program. Partners included Mobile Urban Street Team (MUST) Consortium, Safeworks Calgary, HIV Edmonton, Central Alberta AIDS Network Society and the Hepatitis C Society of Canada, Southern Alberta Chapter.³ 

During this period, an unanticipated event occurred. A key partner, the local chapter of the Hepatitis C Society, ceased to function. It had developed packages of hepatitis C information but LHC was refused access to the materials. Fortunately, the Canadian Liver Foundation and the Chinook Health Region were able to provide some other hepatitis C materials. In addition, the plan had been for the Hepatitis C Society to offer a fixed site for the needle exchange. Instead, in November 2000, a mobile service plan had to be developed.⁴ 

LHC contracted with the John Howard Society to offer the mobile service. Within a few months, this relationship became strained and the two organizations separated, each offering the service separately. During the brief program period, 87 needles, along with harm reduction information and community referrals, were distributed to eight individuals. Education and support were also provided to family members and to significant others.⁵ 

Program documents did not record outcomes for any of the other planned program activities, so it appears that the needle exchange was the focus of funding utilization. The experience did provide several important lessons about how to operate a successful mobile needle exchange, including the need for: 

• Adequate numbers of trained staff to ensure the health and safety of clients and staff members;

• Hours of operation in accordance with the demonstrated needs of program users; and

• Cooperation of community partners and agencies in providing referrals and assessments.

A positive outcome of this early project was the support of the Chinook Health Region's Sexual Health Centre and Chief Medical Officer. The Region provided all the needle exchange supplies at no cost and continues to do so to this day. This set a precedent throughout Alberta and influenced other regional health authorities to consider their involvement in community harm reduction efforts.⁶ 

b) 2000 - Rylands House Hep-C Project

In 2000, LHC received $15,000 from Health Canada for the Rylands House Hep-C Project. The purpose of the funding was to establish a strategic inter-sectoral approach to hepatitis C community-based support and prevention. Planned activities included the identification of partners throughout the region to develop a community-based strategic plan to address education, awareness, and support for those infected with, affected by and at risk for hepatitis C among specific target groups. These plans failed, however. 

According to a report on organizational capacity (prepared by an external consultant for the LHC Board of Directors), management issues, insufficient or missing internal control, and staff and volunteer turnover resulted in an internal crisis. The agency was unable to translate its mission into meaningful goals and objectives. Forward momentum was lost.⁷ 

The funding from Health Canada was partially withdrawn and the agency went through a transitional period. The Board removed the former Executive Director and began to search for a new one. New Board members were recruited to bring their number to its current membership of seven. By March 2001, a new Executive Director was hired. She demonstrated her insight into the emerging HCV context by commenting in the press soon after her arrival: 

HIV and Hepatitis C are not just medical problems, they are social issues.⁸ 

The new Executive Director's experience as a physician working on international community development projects proved very useful in getting this small community-based agency on track. Monthly Board meetings, weekly staff meetings and regular community network meetings quickly improved communications. It became a regular practice to evaluate and report on progress towards formal work plans that included clear goals and objectives. 

More staff members were hired as the agency's limited resources were stretched creatively to increase staffing capacity. Positions include the Executive Director position (full-time), a full-time Program Coordinator position (filled for ten months and now currently open), a Resource Coordinator (who fulfils three part-time activities including administration, bookkeeping and volunteer coordination) and three part-time positions that are each about one-third of a full time position: a Community Development Officer, a Hepatitis C Officer and a Social Worker/Client Services Worker. In addition, there is a pool of 40 volunteers. Overall, the transition experienced by LHC had a net positive effect and the external consultant concluded that the agency was now "stable, capably governed, well-run operationally and responsive to its environment."⁹ She did suggest, however, that new policies and by-laws be developed. 

LHC conducted a needs assessment with HCV positive clients and/or their significant others to identify some specific needs and suggestions for HCV programming in the Region.¹⁰ Client needs had shifted over time at LHC and by 2001, more than 80% of the clients accessing the agency's outreach services were co-infected. Most of them had a limited understanding about hepatitis C, how they had contracted it or how the disease might have an impact on their lives. They also did not understand how HCV was treated or what community supports were available.¹¹ 

The needs assessment indicated that 90% of the co-infected individuals were Aboriginal, although this ethnic group only comprised 7.6% of the total population in the Region. While most lived on the nearby Blood and Peigan reserves, a significant number also lived off the reserves or moved frequently back and forth between the reserve and the city. 

LHC staff found that Aboriginal clients were often reluctant to share their health status with friends, families and service agencies in their home communities. Stigma attached to the diseases of HIV and HCV was a significant issue for them. For example, six of the 12 individuals interviewed for the needs assessment indicated that they would not access community services because of confidentiality issues. A need for more peer support was also identified. 

The needs assessment helped staff and board members clarify the role of the agency; namely, to serve clients who were co-infected with hepatitis C and HIV with a particular focus on Aboriginal people. They began to position LHC as a leader in community harm reduction. In September 2001, the Board held a strategic planning meeting and decided to incorporate hepatitis C fully into the vision and mission statement of the organization: 

• Vision statement:
  All individuals and communities in South-western Alberta have the ability, capacity and desire to eliminate the harm caused by HIV and hepatitis C.

• Mission statement:
  Through support, education and advocacy, LHC facilitates compassionate and effective community responses to HIV and hepatitis C. (Section 3: Summary of Program - Funding application to ACHF - 03/19/2002)

As one staff member commented: 

I'm glad that we are now working with hep C because we have a lot to offer from our experience with AIDS. 

The Board's new operational plan was submitted to their main funder, the Alberta Community HIV Fund (ACHF), a joint initiative of Alberta Health and Wellness and Health Canada's AIDS Community Action Program. It provided a joint plan for HIV and HCV services, demonstrating that the agency's philosophical shift from a single disease to a broader harm reduction focus had been institutionalized.

LHC Budget Sources

	Alberta Community HIV Fund	78%
	United Way, Wild Rose Foundation and fundraising	13%
	Health Canada, Hepatitis C Prevention, Support and Research Program, Prevention and Community Based Support Regional Project Funding	9%

c) 2001 - Hepatitis C Community Outreach Services Project

In April 2001, Health Canada funded LHC for $30,000 over two years (2001-2003) to provide Hepatitis C Community Outreach Services. This project is the focus of this case study. In addition, in September of the same year, the agency also received $94,000 for a separate three-year project entitled Aboriginal Partnership of Southwestern Alberta on HIV/AIDS Harm Reduction and Hepatitis C. Most of the funding was provided by the ACHF but Health Canada contributed $2,000 per year for two years to enhance services to the Aboriginal population through an upward amendment to the Outreach Services project. 

The goals and objectives for the Outreach Services project were much more specific and measurable than those of previous projects and included:¹² 

1. To promote enhanced health and wellness of persons living with, affected by or at risk of contracting hepatitis C within the Chinook Health Region by:
   
   
   • Designing/compiling educational packages;
   • Increasing the number of community agencies participating in the Outreach Services;
   • Providing information to link clients with appropriate community resources; and
   • Providing the Aboriginal community on the Peigan reserve with appropriate information and linkages to resources.
     
     
2. To develop an effective hepatitis C program evaluation plan by:
   
   
   • Monitoring; and
   • Implementing an evaluation plan.
     
     
3. To strengthen, expand and coordinate prevention and support services on HIV, HCV and Harm Reduction focusing on the Aboriginal population of Southwestern Alberta (added in Sept 2001) by:
   
   
   • Strengthening partnership and networking between communities, agencies and organizations addressing Aboriginal needs;
   • Making culturally appropriate resources available to communities, agencies and organizations addressing Aboriginal needs;
   • Strengthening prevention, care and support services for the Aboriginal communities; and
   • Documenting and evaluating partnerships and partnership activities on a regular basis.

During the year 2001-2002, project staff conducted a number of activities: they fielded phone calls requesting information about hepatitis C; built capacity through providing harm reduction and universal precaution presentations to various professionals and community partners; worked toward the development of partnerships in the community; continued to offer a needle exchange (this time in two local pharmacies); provided presentations to a number of community, school and residential groups; conducted a bar coaster campaign; set up harm reduction displays; and, distributed pamphlets and materials. 

The Executive Director commented on the differences the agency had experienced in meeting the needs of people with HCV compared to those with HIV/AIDS (the target group most familiar to staff): 

The need for support and counselling is not as great with HCV as it is with HIV/AIDS. Hep C individuals seem to be more mainstream with many maintaining jobs, etc. ... We find that we provide support at specific times. First, when they find out they are hep C positive - often they have a lot of questions at this point and they are looking for information and answers. The next time people are looking for support is when their disease progresses into the chronic stage where they are looking at or receiving treatment. 

Hepatitis C Community Outreach Services Project Accomplishments 

1. The Development of Partnerships 

The development of partnerships was a key focus of LHC during 2001 and at the time of our case study visit in March 2002, staff members were able to point to three successful networks in which they played a key role: 

• The Aboriginal Partnership of Southwestern Alberta on HIV/AIDS, Hepatitis C and Harm Reduction; 
• The Community Harm Reduction Network; and 
• The HIV/Hep C Community Consortium. 

In addition, links were strengthened or maintained with the following community partners: 

• The Hepatitis C Society; 
• The Chinook Health Region and Sexual Health Centre; and 
• Draffin's Pharmacy. 

As the Executive Director commented: 

The LHC Office has become the focus point for hep C community development in the Chinook Health Region. Because we have access to specific hep C funds, we can afford to offer more information sessions and support than other organizations concerned about hep C. Partnership with other stakeholders such as the Community Health Nurse of the Chinook Health Region, the hep C nurse at the Regional Hospital, and the local chapter of the Hep C Society are crucial to ensure collaboration and sustainability of the program. 

While Health Canada's Hepatitis C Prevention and Community-based Support Regional Project Funding contributed to the Aboriginal Partnership in a limited way, the Aboriginal Conference on HIV/AIDS, Hepatitis C and Harm Reduction, organized by the Partnership, was a definite accomplishment and raised community awareness about hepatitis C.¹³ Approximately 170 individuals attended the two-day event. Two plenary sessions and one workshop were provided on the topic of hepatitis C. 

An unplanned outcome of staff efforts to strengthen partner relationships was the request by the Hepatitis C Society to meet in Rylands House for their monthly support group. The members thought that the location was more convenient and comfortable than the hospital, where they had met formerly. LHC staff were pleasantly surprised that Society members were willing to meet in the offices of an HIV/AIDS service organization. 

The continuing needle exchange program was evidence of a successful partnership between two local pharmacies, the Health Region and LHC. In an interview, one of the pharmacists clearly supported the value of risk reduction in the community. She commented: 

We are very happy to be involved. Even if we make a difference for one person, it has been a success. 

When the individuals with HCV were interviewed about the project, one identified the best thing about LHC as: 

... the encouragement they provide. They help you accept and live with hepatitis C. They provided information and counselling - it helped a lot. 

Despite positive comments such as this one, only three individuals with HCV were willing to be interviewed during the case study visit. Identification appeared to be an issue in the region. As the Chief Medical Officer pointed out, there were different HCV sub-groups whose needs should be served: 

We are still grappling with segregation between the various hep C groups (IDU, blood transfusions and those not identified) - we have three sub-communities that we are trying to serve with a limited community base. 

Challenges

In their interviews, staff and stakeholders identified a number of significant challenges to be overcome in order to develop an adequate response to hepatitis C in the Lethbridge community. 

1. Learning to Work with the Aboriginal Community

All the staff and stakeholders who were interviewed indicated that access to the Aboriginal community was still very limited and few hepatitis C services existed for this group. As a reserve-based health care professional commented: 

The biggest challenge is the entry point. 

A significant lesson learned by staff and partners during 2001-2002 was that working with Aboriginal communities takes time and may not go as planned. Originally, LHC staff believed that introducing hepatitis C education and support would be easier on the Peigan reserve than on the Blood; however, more progress was made during the year with the Blood and less with the Peigan. Plans for information meetings and workshops with chief and council members went unrealized but several elders did participate in hepatitis C workshops. 

Overall, the awareness about HCV and the stigma attached to the disease made for slow progress towards project objectives. The conference had helped to raise awareness, particularly among managers of health services in Aboriginal communities (several of whom were part of the conference planning committee) but it became clear that the education of front-line workers and elders at both reserves should be the priority in the immediate future. Several of the individuals interviewed commented on the stigma associated with hepatitis C, likening it to HIV in the early years. As one health care professional from a local reserve commented, there was a: 

...lack of information, not knowing what it is and how to deal with it. Many infected individuals go elsewhere rather than live on the reserve. They may come back to die. 

Confidentiality was a related issue. The Executive Director indicated that Aboriginal people often left the reserve because they did not want anyone to know of their disease; some did not even want to be treated in Lethbridge because the community is so small. 

2. Need for capacity building among professionals 

Lack of information among professionals was still a considerable issue and a number of community stakeholders identified the need for more information for professionals - for physicians (on standard care practice, long-term prognosis of the disease and the specific needs of people who inject drugs) and for nurses and clinics (on risk factors and harm reduction strategies). General public awareness was also required. Employers were identified as needing information on the impact of hepatitis C in the workplace, on workers and on productivity. In the Aboriginal community, health care workers saw their own education as a preliminary step to working with infected individuals and their families: 

We [the staff] need more education, more awareness and more counselling. 

3. Need for HCV Materials for Specific Target Groups 

A need was identified for more specific materials on hepatitis C, not only for Aboriginal groups, but also for low literacy and youth groups, as expressed by the Executive Director: 

No one else distributes information but us; therefore there is not enough information. We have been looking for posters, but we can't find them. It is difficult to access information; all is new, scattered and is representative of a specific organization or program. 

One of the clients we interviewed supported this identified need for information: 

[I] had to find information about care and treatment on my own, [I] found out after transplant that the hepatitis C will come back. Nothing was explained before the transplant. Doctors don't pay much attention to hep C - it is an invisible disease. It is hard to get sympathy and actions from physicians and the general public when you look well. 

4. The economic and social burden of the disease 

The financial burden associated with having hepatitis C was identified as an obstacle by a number of different stakeholders. As one nurse explained, there were costs associated with an individual acquiring non-group coverage and there was a three-month waiting period. Loss of income was a real possibility as some individuals had to leave their jobs due to treatment side effects. There were also costs associated with the travel required to obtain treatment. As one of the clients explained: 

People from Southern Alberta have to travel to see a specialist [in either Calgary or Edmonton]. It is a big expense for people and there is no fund people can access to help with these expenses. Sometimes [you] need to stay for six weeks, need to bring family support with you, and they have to pay for hotels and meals during this time. 

Other costs were more social or inter-personal in nature. As another nurse commented: 

The impact it has on an individual's life depends on the severity but could include loss of income, loss of ability to parent when ill, inability to stay involved with family, inability to talk about it and get support, the idea that you have done something bad), and the fear of telling and not getting support. 

The impact at the personal level was echoed by one of the clients we interviewed: 

I felt tired and isolated, nobody understands what you go through. No one really knows what it's like to not be able to get out of bed. Day-to-day living is hard. 

5. The need for long-term program support

Program sustainability was an issue of considerable concern in the region. At the provincial level, the Chief Medical Officer indicated that no strategy was currently in place; the region was trying to respond as best it could to an emerging health issue: 

The province [of Alberta] is not looking at prevention and the long-term consequences of the disease ....We've tried to pull together a quilt/patchwork of responses, but we can't do more until hep C is a priority at the provincial level. 

A client at LHC reflected on the need for program support as follows: 

People are in desperate need of services similar to what is available in the big cities, and they need to continue otherwise hep C will spread more. It is vital that this is ongoing, but there needs to be a lot more work in the Region. 

The Executive Director believed that the new agency mandate - to provide support for both HIV/AIDS and hepatitis C - was the best response to an identified community need. However, long-term support for programming was uncertain and was a cause for concern: 

LHC has made the decision to incorporate hep C into its vision and mission. It has made a long-term commitment to be a focal point in the Chinook Health Region on hep C. Decisions on how such a commitment will be carried out if funding stops have, however, not been made, and will depend on the provincial and national discussion and strategic planning efforts. 

Concluding Remarks

Overall, the 2001-2002 year was an eventful one for LHC. The agency moved from a focus on HIV/AIDS to the broader perspective of harm reduction. Hepatitis C was now considered to be a significant health risk in the region. Like HIV/AIDS, it not only had medical implications, but had serious social and economic ones as well. Therefore, targeted programming activities in the areas of support and education were required. In an uncertain funding environment, this move demonstrated the agency's commitment and maturity. It suggested that the project's goals would continue to be achieved, and further, that in the future the agency might play a role as an advocate in support of stable funding.

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

• Project funding documents from Health Canada 

• Project Progress Report, April 1-September 30, 2001 

• Project Progress Report, October 1, 2001-  March 31, 2002 

• HIV Connection mission and vision 

• Needle exchange statistics 

• Summary of consultation process for development of an Aboriginal Partnership project 

• Hepatitis C statistics for the Chinook Health Region 

• Job descriptions 

• Newspaper articles 

• Newsletters 

• Samples of resources available 

• Southern Alberta's First Aboriginal Conference on HIV/Hep C and Harm Reduction - Conference program and summary of media coverage

• A discussion paper - Integrating Hepatitis C into the Mandates of Community Based HIV Organizations (by Phil Rauch - Central Alberta AIDS Network) 

References

1. Chinook Health Region
   
   
2. Hepatitis C Community Outreach Program 2001-2003
   
   
3. Funding Approval Form
   
   
4. NPNU Outreach Program, Final Narrative Report
   
   
5. NPNU Outreach Program, Final Narrative Report
   
   
6. NPNU Outreach Program, Final Narrative Report
   
   
7. Mary C. Thompson, November 29, 2001
   
   
8. Lethbridge Herald, March 1, 2001
   
   
9. Mary C. Thompson, November 29, 2001
   
   
10. Hepatitis C Community Outreach Program 2001-2003
    
    
11. Hepatitis C Community Outreach Program 2001-2003
    
    
12. Project Progress Report April 10, 2002
    
    
13. The evaluation of the conference indicated that it had been successful in raising awareness.

 

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