Resource Library

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

Case Study:
Kingston Street Health Centre
Kingston, Ontario

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Development of the Street Health Centre

The Street Health Centre (SHC) in Kingston provides primary care, prevention and support services to hard-to-reach and high-risk groups including people who inject drugs, street-involved youth and people involved in the sex trade. It is housed in an older building, occupying what was once three small stores located in one of the oldest parts of the downtown core. It is only a few steps from the Hôtel Dieu Hospital and the Youth Drop-in and Alternative School. The SHC is a busy place, bubbling with activity both inside and out on the street. People come and go, some linger and chat with clients or staff. Frequently, staff members can be observed walking around just to talk with the clients. During our three-day visit on-site, we observed many "regulars" that seemed to be quite happy to have a place to call their own and to have friends (either staff or other clients) to meet there. 

The Centre is subdivided into three major areas: 

• The Needle Exchange and Methadone Dispensing Area where people who inject drugs go to get needles and kits as well as methadone treatment. The clinic is open seven days a week. This area is closed off from the other areas of the SHC during the weekends. 

• Medical, Counselling and Outreach Services where many clients go to access the nurse practitioner, the doctor and the counsellor. Some people also get together in this space to have a chat or get information/brochures or used clothing. This space includes the reception area and office, some examination rooms, a counsellor's office, and storage space. 

• The Quiet Area which includes an area for support group meetings, administrative offices, a community kitchen area, and a children's room with a television and many toys and supplies to keep children busy and happy while their parents are taking part in a support group in the next room. 

The populations targeted by the Street Health Centre include: 

• People who inject drugs and individuals involved in behaviours at high risk for hepatitis C, HIV and other drug-related harm; 

• Individuals infected with hepatitis C and those affected by it; 

• People marginalized from mainstream social supports and negatively affected by determinants of health (street-involved youth, homeless, co-infected, ex-prisoners); 

• Health service and community service providers working with HCV-affected populations (medical professionals, shelters, addictions agencies, etc.); and

• The local general public, in their understanding of HCV and injection drug use issues (addressing issues of stigma).¹

The evolution of the SHC over an eleven-year period is an interesting example of the development of a comprehensive care and support model. It originated at the Kingston AIDS Project in 1990 as a health education outreach program. It had one staff member working half time in the community and half time in the local prisons. It was quickly apparent that a needle exchange program was needed and so in 1991, the Keep Six! Needle Exchange Program was developed, the first such program in a mid-sized Ontario city. Using a community development approach, clients were engaged in the program and a Community Advisory Group² was established. In 1992, as there was a significant incidence of HIV positive test results attributable to injection drug use, the needle exchange program received funding from the Kingston, Frontenac, Lennox and Addington (KFL&A) Health Unit and more staff were hired. 

In 1995, the program came under the direct management of the KFL&A Health Unit. As the original location was far from downtown and not adapted to the needs of these clients, the Street Health Centre opened in its current location in 1996 as a satellite office of the Health Unit, under the administrative direction and support of the Sexual Health and Sexually Transmitted Disease (STD) Program. The individual who had been with the program from the beginning was hired as Coordinator. In 1997, the Mandatory Programs legislation was introduced by the Ontario Ministry of Health and Keep Six!, like other public health programs, was funded 50-50 by the municipal and provincial governments. 

Also in 1997, after a year of needs assessment and program and policy development, a Methadone Treatment Clinic was developed in partnership with a local family doctor who strongly believed that a significant number of individuals with chronic opioid dependence would access methadone treatment if it were locally accessible. In early 2000, a full-time nurse practitioner was added to the SHC staff complement on permanent secondment from the North Kingston Community Health Centre. Thus, by 2001, the incremental and targeted response to various community-based needs had resulted in the following roster of services and programs at SHC: 

1. Keep Six! Needle Exchange Program;
   
   
2. Methadone Treatment Clinic (with a roster of over 200 patients and with five participating physicians);
   
   
3. Full-time on-site nurse practitioner;
   
   
4. On-site medications dispensary;
   
   
5. Injection Drug Use Outreach Strategy worker;
   
   
6. Hepatitis C Strategy (the subject of this case study);
   
   
7. High-risk youth medical clinic;
   
   
8. Youth, opiate users, men's and women's support groups; and
   
   
9. On-site, part-time respite care for children of SHC client families.³

While the Street Health Centre itself has no legal incorporation status, it is the centre of a web of important partnerships,⁴ including: 

• KFL&A Health Unit
  the main sponsoring agency, provides core funding for the Keep Six! program and supports for the Coordinator's salary and utilities.

• North Kingston Community Health Centre
  supports the Methadone Treatment Clinic and funds key administrative support staff; provides the permanently seconded Nurse Practitioner.⁵ 

• Lily-King Primary Care Group
  supports the Methadone Treatment Clinic and the provision of physician, nursing and dispensing services on site. 

• Hôtel Dieu Hospital
  provides the storefront clinic office. 

Managing these key partners and multiple streams of funding was a complex task. As one Advisory Committee member commented: 

Collectively, it is not conventional. It is a nightmare for the money. It is amazing that they can survive! 

Looking at the SHC's incremental growth and continued response to emerging community needs, it appears that some successful marketing and management practices have made this unconventional organization continue to function and grow.

By 2002, the evolving nature of the services offered, including the expansion of the SHC into primary care, suggested yet another change. The plan was that while the needle exchange would remain a mandatory public health program, the SHC would become a satellite of the North Kingston Community Health Centre (funded by the Community Health Branch of the Ministry of Health and Long-term Care).⁶ In April 2002, the brief, Health for All? A Primary Care Profile of the Street Health Centre was commissioned for the purpose of program planning and to aid the transition process and negotiations were under way at the time of our visit. As the document explained: 

The possibility of a primary care centre for the priority populations of the SHC is very real and would be of great benefit to the current and potential patient population. Such a concrete development would be a further, and perhaps most pivotal, step in the movement to bring injection drug use out of the margins of society and into the mainstream of universal, equitable and community-responsive health services.⁷ 

Context 

The catchment area for the SHC is the city of Kingston and the counties of Frontenac, and Lennox and Addington. Including Kingston's urban core and the two surrounding rural townships, the combined population is 175,568. However, as the Methadone Treatment Clinic is the only methadone provider between Ottawa and Oshawa, the Centre also serves clients from Hastings and Prince Edward Counties to the West, and Lanark, Leeds and Grenville Counties to the East, for a combined district population of 475,487. 

The district has a pronounced demographic bulge of baby-boomers, a slightly older population than the provincial average, with higher percentages in the elderly and near-elderly age groups. There is a high number of "lone parents" in Kingston; the level of youth unemployment is higher than the provincial average; and the number of households living below low-income cut-offs is also higher.⁸ 

The SHC principally serves the area of North Kingston, a socially and economically disadvantaged area of the city with high poverty levels. It is also the primary area for the sex trade and drug activity. A community needs assessment conducted by the North Kingston Community Health Centre (2000) found poverty, housing, transportation and access to health services to be pressing community issues.⁹ 

Kingston has a pronounced prevalence of injection drug use, having been the main Ontario city for the production and distribution of methamphetamine in the 1970's. The region includes 11 federal prisons and one provincial detention centre. Over 7,000 federal inmates are detained in these institutions and their families often relocate to the area. It is also the home of Queen's University which has a large school of medicine, a school of nursing and a centre for family medicine. 

A review of positive HCV lab results reported to the KFL&A Public Health Unit was conducted by its Communicable Disease Department for the years 1995 through 1999. Note that these results include the local federally incarcerated prison population:

The prevalence of hepatitis C among federally sentenced prisoners was estimated to range between 33% and 41%.¹¹ Seroprevalence of HCV in one medium-security institution for men increased from 28% to 33% from 1994-1998.¹² A 1998 study found that 24%¹³ of the prison population reported chronic injection drug use while incarcerated, an increase of 100% over a four-year period.¹⁴ Federal prisoners who use injection drugs do not have access to sterile syringes and only a small number are on methadone therapy. Given the movement of such individuals in and out of these prisons, the Kingston population is seen to be at risk for diseases such as hepatitis C.¹⁵

Hepatitis C Strategy Project 

Over the years, the SHC conducted a number of needs assessments and other research activities which helped to formulate SHC's first proposal for Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-based Support Regional Project Funding. These included:

• Health and Treatment Needs Assessment of Opiate Users (1996) - led to the development of the Methadone Treatment Clinic and indicated a strong prevalence of HCV infection, in addition to client demand for information, education, advocacy and support. 

• Community Needs Assessment (1998) - identified the need for enhanced primary care services to people who inject drugs, street-involved youth and sex trade workers. Again, this assessment indicated a strong presence of HCV in the client community and identified unmet health counselling, treatment, educational and support needs. 

• Environment Scan (1998) - led to the funding of an IDU Counsellor position to assist in identifying community and client-identified need for outreach, support and education to people who inject drugs. This scan presented data on epidemiological trends, including HCV prevalence and the rise of HCV-specific needs. 

• Chart Reviews (ongoing) - determined a 73% seroprevalence of HCV infection among methadone clients and 87% seroprevalence among participants in the SHC Creating a Better Life for Women program, a series of information and discussion sessions aimed at local sex trade workers. Only 1% of SHC clients receiving medical services were engaged in anti-viral treatment for their HCV.

Informal consultations were also conducted prior to applying for funding from Health Canada. Individuals living with, affected by or at-risk of HCV were consulted along with health professionals, including social workers and specialists in the area of gastroenterology, family practice, hepatology and internal medicine. 

A pronounced need for hepatitis C-specific education, counselling and support for SHC clients was identified. As the agency commented in its proposal to Health Canada, a combination of epidemic-prevalence and poor relationships with mainstream health and medical services has resulted in a marked increase in utilization of our staff resources for issues related to hepatitis C.¹⁶ Primary areas of need identified by the consultation process included: 

• Basic information was needed in a variety of media, including one-to-one counselling and group seminars due to high levels of illiteracy which reduced the efficacy of written information; 

• Health teaching and counselling were needed in the areas of self-care and lifestyle issues; 

• Education and counselling related to HCV risk reduction were needed; 

• Emotional support related to diagnosis, infection, illness and treatment was needed; 

• Advocacy for access to treatment and for addressing discrimination and stigma issues was required; 

• Education (presentations and in-services) in the general community and other social/health services was required; and 

• Peer and group support was needed for those infected with or affected by HCV.

In October 1999, the SHC submitted their proposal to Health Canada for the Hepatitis C Strategy project. It had the following goal: 

To develop the capacity of the local community to respond in a healthy manner to the many health and social issues faced by those living with, at risk of or infected by hepatitis C.¹⁷ 

The project was funded for a total of $125,000 from September 2000 to September 2002 ($50,000 in 2000-2001 and $75,000 in 2001-2002) accounting for approximately 9% of the total agency budget of $600,000. At the time of our visit, there were ten full-time-equivalent (FTE) staff positions at the Street Health Centre, one of which was supported by this project: 

• Keep Six! Needle Exchange Program: 1 FTE Coordinator, 1 FTE Outreach Worker 

• Methadone Treatment Clinic: 1 Medical Director, 2 Clinic General Practitioners, 2 FTE registered nurses, 1.75 FTE administrative/support staff 

• Hepatitis C: 1 FTE Outreach/Strategy Coordinator 

• IDU Outreach Program: 1 FTE Counsellor, 0.5 FTE Peer Outreach Worker 

• Aboriginal HIV/AIDS Strategy: 1 FTE Counsellor/Educator 

• Nurse practitioner: 1 FTE

In addition, approximately 10 volunteers worked at SHC. They assisted in reception duties, answering the telephone, stocking shelves and preparing kits for the needle exchange. 

While there is no board of directors, the SHC has had an Advisory Committee since 1991 which has included current clients as well as community members such as representatives from Options for Change (an alcohol and drug treatment centre), the Centre for Addiction and Mental Health, the Homeless Centre for Youth, the drug use intervention facility, HIV/AIDS Regional Services (HARS), Public Health and, occasionally, medical staff. Typically, eight to ten people are members at any given time. Members are nominated and if interested, they are invited to participate. There is no time limit but most stay an average of three years. 

The role of the Advisory Committee is to provide advice and recommendations to the SHC Coordinator but they are not in a supervisory role. The Coordinator reports to the Supervisor of the STD program at the Public Health Unit, and takes advice from the Advisory Committee, staff and clients. As he explained, before the Centre develops a project, all of these groups have to be consulted. Staff meetings were held twice a month to talk about program issues and the counsellors met once a week to discuss direct client issues.¹⁸ 

The philosophy of SHC is one of respect for clients. As the Coordinator explained: 

We don't consider drug users as criminals, and we don't judge people. Injection drug use is directly linked to poverty, and to sexual abuse. We understand people. We connect with them. Our clients don't have the same services in the community because people judge them. We want their long-term health condition to get better. We create a comfortable environment for people. We are very protective of our clients. Society did not treat them well - it punished them. 

An Advisory Committee member reflected this view as well: 

The clients and their lives are important to us. They have to be respected. We care for them - their life is important. They don't need a lecture nor to be pushed. Here, they make better choices to advance in their life.

And typical client comments about SHC suggested that this philosophy was borne out in practice:

I have the feeling that somebody really cares. These guys care. It is not only a job.

The Street Health Centre helps me a lot. I have a doctor here. She really understands me and what's going on. Before, they just pushed me away. 

Apart from the SHC, the other agency in Kingston that provides services for individuals infected with hepatitis C is HIV/AIDS Regional Services (HARS), a community-based voluntary organization with a focus on HIV/AIDS. It also received Hepatitis C Prevention, Support and Research Program, Prevention and Community-based Support Regional Project Funding. HARS provides prison-based hepatitis services, integrates HCV information into its community education component and sponsors a hepatitis C support group.¹⁹ 

The two agencies developed a common Hepatitis C Advisory Committee. As one Advisory Committee member explained: 

It just seemed logical that the two organizations team up to make links between the different regional initiatives. 

Each agency provided two members to the committee and other members included representatives from the KFL&A Health Unit (Infection Disease Prevention Program), Options for Change, the North Kingston Community Health Centre, the Canadian Liver Foundation, and addiction services. Clients who were stable enough to participate in the meetings were also members.

At each meeting an activity report was presented, ideas were generated and information shared. Meetings were held bi-monthly and the Chair rotated among the members. Reported outcomes included: 

• Greater visibility for hepatitis C; 
• Strengthened working relationships with community partners; and 
• Better coordination, planning and an improved referral system.²⁰ 

When asked how the many players at SHC communicated with each other, the Coordinator explained: 

We communicate with our clients on a daily basis. The client is a partner with whom we have a good long-term relationship. We talk to the clients each day. We build a relationship. We have to listen to them - that is our first goal. There are meetings with the service providers around big projects. We are not very strong on meetings. We prefer working directly with the agencies. A lot of the agencies are here [on site]. They spend half a day per week working directly with the clients at the Street Health Centre. We have a newsletter that is published two or three times per year to keep the agencies informed. Our staff goes to them to find out what their needs are, and what is happening. 

The Hepatitis C Strategy project was still under way at the time of our visit. Planned activities included: 

1. A comprehensive HCV community needs assessment to determine the requirements of those infected with and at risk of getting HCV;
   
   
2. The establishment of a local resource centre with information on support;
   
   
3. Educational and prevention services for people at risk;
   
   
4. The hiring of an outreach worker to help develop the capacity of high-risk populations (i.e., people who inject drugs, sex trade workers, street youth and ex-prisoners) to demonstrate self-care and provide on-going peer education and support.²¹

1. The Needs Assessment

The needs assessment, entitled No Common Cold, Hepatitis C Community Needs Assessment, was conducted in the Spring of 2001. The study included a literature review, a questionnaire to local organizations which might be in contact with people infected with, affected by or at risk of HCV, and 46 key interviews including 31 with individuals living with the disease and 15 with individuals affected by it. Of the individuals interviewed: 

• 67% reported social assistance as their main source of income; 62% had not completed their high school education; 59% reported living on annual incomes of less than $8,000; and 35% were on Ontario Disability Support. 
  
  
• 67% had tested positive for HCV. Of these: 
  • 68% of those testing positive had not received any support after being diagnosed;
  • 32% had not received any information prior to testing; and
  • 16% were unaware that they had been tested prior to receiving their positive test result.
  
  
• 26% reported having had hepatitis B and 19% reported past infection with hepatitis A.²²

The needs assessment also reported some interesting findings about beliefs, attitudes and knowledge about HCV. When respondents were asked why they had not received treatment, the most frequent responses were that the disease was not active or that there was no cure.²³ When they were asked what could be done to make their HCV easier to deal with, the most common responses were "nothing" and "more public education/reduced stigma". Many had "no concerns" because they were "not ill yet" and until then, they had more pressing issues to deal with (HIV, drug dependency, housing issues, disability, welfare, etc.) The report concluded: 

There seems to be an underestimation of the importance of lifestyle changes in living with hepatitis C. The importance of reducing, or preferably eliminating, alcohol consumption was hardly mentioned. The tendency to put things off "until I get sick" may be in recognition of the severity of other issues facing individuals, or may be a failure to recognize the importance of managing the disease prior to liver failure. 

In terms of their information needs, most people interviewed believed that they had a good understanding about the routes of transmission for hepatitis A, B, and C but in fact only one of the 46 interviewed correctly identified all routes. While some wanted information on treatment options, others thought, "I know all I need to know." Over half wanted information on HCV presented to them in person rather than through other media; others preferred pamphlets; most often, they wanted information about transmission and effects of the disease on their body. 

Those interviewed who were not HCV-positive themselves were affected through their relationships with infected individuals such as friends, parents, and spouses. A total of 87% believed that people with HCV were treated differently by others because of their disease and 23% had experienced discrimination themselves due to their relationship with their infected significant other. The report concluded: 

The affected cohort predominantly reported that HCV positive individuals are treated differently because others "think you can catch it" through casual contact. Many identified that HCV positive people are "treated like they have HIV", and that others treat them as if they had done something wrong and that there was an element of blame or moral judgment.²⁴ 

Only four of 20 targeted organizations responded to the survey despite multiple telephone call-backs. Informal feedback obtained by SHC staff indicated that some of the non-respondents felt that HCV had little or no relevance to their mandate or services provided. As staff reflected on this: 

What is very evident is the community service providers' lack of education and awareness of the prevalence of HCV. Other responses ranged from "Our clients don't have HCV", "Only druggies get those things (HIV/AIDS and HCV)", "We don't work with anyone who has HCV". Another respondent indicated that they will take HCV seriously when the government does - until then, it wasn't their concern.²⁵ 

However, these observations were not viewed as a generalization across non-respondents but were simply an indication of some community perceptions about HCV.²⁶ 

Overall study conclusions included these thoughts. 

• Individuals living with, affected by or at-risk of HCV are influenced by the overwhelming prevalence of the disease; aware of their risk, but not fully informed or supported in grasping the particulars of transmission, prevention, treatment and (in the case of hepatitis A and B) vaccination.

• Community providers, in general, are ill-equipped to address the needs of prevention and support; there exists a pervasive passivity in failing to recognize the seriousness, preventability or impact of HCV on the community.²⁷

In particular, the pronounced experience of stigma identified through the needs assessment indicated the need for a general anti-stigma campaign: 

Such an initiative is needed to address the underlying and socially-constructed stigma-theory: that hepatitis C is a self-wrought disease of addicts, and that injection drug use is a sign of weakness, a moral failing. Hepatitis C, as a disease of the liver, is laden with experiences of shame, blame and moral judgment. Judgmentalism and social stigma remain as strong indicators of continued HCV transmission and may hinder access to and the provision of quality care and treatment. 

Because of their on-going involvement with people who inject drugs, the staff at SHC has given considerable thought to the issues of stigma and health. Because injection drug use is a criminal offence under current legislation, the resulting secrecy, shame and underground criminal behaviour contribute to the formation of a specific sub-culture. As project documentation explained: 

The unique culture of IDUs includes distinct codes, behaviours, rituals and identity construction. The distinct IDU cultures will be locally-based and varied. While IDU cultures are socially-based networks of peer interaction, the heart of IDU cultures is the very powerful, distinctively personal and quite functional act of injection drug use itself.²⁸ 

The findings of this important needs assessment have been used to train community agency service providers, to identify gaps in programming and to support further funding proposals. 

2. The local resource centre 

Originally, the SHC had planned to develop a local resource centre on hepatitis C, in order to coordinate and consolidate access to information and educational/prevention materials, the provision of health information and referral, with targeted education and training provided to the local community, health and social services.²⁹ However, it appeared that the development of a physical site for print resources proved to be problematic. As the agency reported to Health Canada: 

We have...struggled with the logistics of a "resource centre" due to space limitations and the dynamics of this high-risk culture.³⁰ 

From their interactions with people who inject drugs, staff members were aware that many clients preferred one-to-one or small group communication due to literacy and/or attention deficits. This was borne out by the findings of the needs assessment in which 53% of respondents preferred to get information in person.³¹ However, one staff member commented on the problems associated with verbal communication with this group: 

Our clients don't remember the information we give them. We constantly have to repeat the information to our clients or to people infected. Just yesterday, I spoke to a guy and he had the wrong information. 

As an example of their communication process, the Coordinator explained how the Hepatitis C Strategy project had been communicated: 

To make the project known to the client, we didn't have a lot of written material because we felt that none of the existing materials were adapted to the literacy level so we talked with them. Fundamentally, we pass on information by talking with our clients. Some public conferences may bring clients. We also had an open house where we invited everyone from the community.

In terms of targeting community agencies and the general public, he continued: 

We told the local agencies about the project by mail, pamphlets, meetings and the open house. We reach the general public through the Liver Clinic, advertisements, and conferences. 

Overall, it appeared to be the experience of the SHC that a physical "resource centre" was not the best way to communicate with this target population. It appeared that the clients at SHC felt that their information needs were being met. As different clients commented: 

It is easy. If we need information, we can go to the doctor here at Street Health. 

It is very easy to get information if you know people around here. I got a lot of information from here. 

It is very easy to get information from the Street Health Centre and the way it is presented is appropriate and it responds to my own needs. 

3. Educational and prevention services 

As a general rule, however, clients came to the SHC ill-informed. As the Coordinator commented, 

There is a lack of appropriate education and information. The Street Health Centre is a catalyst for the hepatitis C work in this community. We offer information to clients, liaise with different agencies, and do hepatitis C awareness. 

A key educational and prevention service provided by the SHC was the Methadone Treatment Clinic. SHC looked at the incidence of HCV over time through the use of the Patient Database and agency documentation suggested: 

Looking at incidence over a significant period of time helps to understand the evolution of risk and may serve as some sort of measure of prevention efficacy. In the case of Street Health, the dramatic increase in absolute number of screens conducted since 2000 illustrates the pragmatism and public health benefits of locating a full-time Nurse Practitioner at Street Health.

HCV Screens by Year
Year	Negative	Positive	Annual Incidence
1997	3	1	25%
1998	17	10	37%
1999	35	18	34%
2000	113	19	14%
2001	144	17	11%
Total	312	65	19% (average)

Staff noted a decline in the annual incidence of HCV since the peak year of 1998 and linked this observation with the fact that lab screens from the SHC patient population had increased noticeably since that time. As the Coordinator commented: 

The methadone program is the entry door to meet people that may have hepatitis C. Methadone comes first, hep C second. In 1996 we realized that hepatitis C was a big issue and that there was a high rate.... Now the percentages of newly tested clients having hep C is lower, which means that prevention could be working. 

However, the Coordinator also stressed the importance of the reach of their needle exchange - one of the busiest exchanges in Ontario by volume and numbers, with a very aggressive history of outreach and distribution. He felt that some needle exchange programs focused too much on exchange and not enough on addressing overall need.³² 

Hepatitis C information was integrated into many activities at the clinic and, in fact, into all SHC programs. As one client we interviewed commented: 

I have the information I need on hep C [hepatitis C]. They're monitoring my blood regularly. In general, I love the staff. This is a very good support centre. 

For others, though, prevention information came too late. As one client explained: 

I was concerned about AIDS, not hep C. The last test I passed before I got clean, I found out I had hep C. If I would've had the information, I would have been more careful. 

When staff were asked if the project had made a difference in the community, they all commented about project impact: 

It is hard to say. Our interest is with the client. We know they receive more information. The agencies are better educated. The health professionals refer more people here. In the community, people are more aware about it. 

It has to have made some impact. We had some exposure in the newspaper, we did interviews, workshops, mail out. Ten years ago, we tested drug users and everybody had hep C. We did not have any information, any pamphlets. We knew nothing about the medication. There is a big change now. 

A lot of work has been done. Other agencies did take advantage of us being here, especially the shelters. 

Further, they saw that the project had made a difference in clients' lives: 

There is some evidence that our clients know more, and that they are more effective in making decisions. Since we have been doing something about hep C, the number of new hep C cases is lower. We've tested everybody, and less new people have it now. People know more about it. This may be an impact of the prevention work we've been doing. The staff and physicians are more aware of the issues. Our clients are more educated, i.e., on the different types of hepatitis. The clients are less confused. They can prevent. 

People are more confident. We bring them together. They have a common interest. They see that they are not the only ones. 

I think it helps the stigma problem. People are more aware of how to have a healthy life. There is also more awareness for the clients who don't have hep C. Since hep C has become an issue, the testing on hep C is much higher. There is more awareness on the risks. They have more information. 

It was early to draw conclusions, but it appeared that the combined strategies of the Methadone Treatment Clinic, the needle exchange, and the integration of hepatitis C information into all SHC activities, were having a positive impact on prevention.

4. The Outreach Worker

At the time of our visit, the Hepatitis C Outreach/Strategy Coordinator has been in that position for two years but in fact had been working full time for the organization for over five years. As part of a multi-disciplinary team, she provides front-line care, assessments, counselling, referral, and education to the Centre's clients and assists in the provision of group therapy. She also provides outreach intervention through Keep Six! and offers counselling and support to clients of the Methadone Treatment Clinic. About 75% of her work relates specifically to issues associated with hepatitis C. 

Typical activities include meeting with clients (about 50 per month), sending information packages to health professionals and community agencies, media relations, liaising with the Hepatitis Clinic in the Hôtel Dieu Hospital, and preparing workshops and presentations.³³ For example, a workshop was held in March 2002 on hepatitis C and injection drug use. Approximately 50 individuals attended. 

Other staff at the SHC who spent a lot of time on hepatitis C-related issues included the nurse practitioner and the Peer Outreach Worker. For the last two years, the nurse practitioner has offered primary health care to many SHC clients. As 57% of the individuals in the patient database have no family doctor, they rely solely on SHC for primary care services.³⁴ She works with the Methadone Treatment Clinic and assesses people by testing for HIV/AIDS, hepatitis C, STDs, and doing PAP tests for women. As she described her job: 

I do a lot of teaching on weight and health issues.... If they have hepatitis C, I talk about treatment, alcohol. The clients are very interested in getting more information. When they start the Methadone they don't eat well. I also have my own caseload. I work with drug users that can't have methadone. I see them on a regular basis. We talk about birth control, safety issues. I also see prostitutes, but they are also drug users. 

The Peer Outreach Worker spends about half of her time working on hepatitis C-related issues. Although she has been in this position for only three years, she volunteered at the Centre for the previous ten. Her role is to advocate for the clients. As she explained: 

I support the clients when they go through a crisis phase. I get them to the point that they can see better and carry on with their life.... So many people have it or their girlfriend has it. When people get the test results, they need help. When people come here, they know that we test everybody. But, some people find out they have it when they [turn] yellow. We had two deaths from liver disease. 

The involvement of these key staff members in issues related to hepatitis C was evidence of the integration of hepatitis C prevention and education activities into the mainstream functions of the SHC. 

The overall impact of Health Canada's funding of this project is that a focus on hepatitis C has emerged in all SHC services. Staff observed the positive difference that this has made to the agency, as the following comments suggest: 

The money spent by Health Canada's Hepatitis C Program is money well invested ... The kind of project we offer is very good. 

Since the hepatitis C program started, I find it incredible to be able to refer clients to [the Hepatitis C Outreach Worker]. Since the Program started, there is a big difference in my ability to explain to the clients about hep C [hepatitis C].

Hepatitis C Strategy Project Accomplishments

1. Agency Developed Using Community Networks 

Many specific project successes have already been described above but what is of particular interest to the mid-term evaluation of the Hepatitis C Prevention, Support and Research Program is the example which the SHC provides of an agency that is demonstrating how to "enhance the capacity of the community to provide on-going natural and sustainable enhanced care networks"³⁵ to address issues of hepatitis C. By tapping into or expanding on the roles of other community agencies and government programs, SHC has continued to flourish and grow 

The web of partnerships which, when taken together, create the SHC can be further studied to gain an understanding of how a tiny education program can grow to become a multi-purpose agency with both primary care and prevention, education and support functions. 

2. Research into the Injection Drug Use Population 

The Street Health Centre's close, extensive and long-term interaction with people who inject drugs provides insight into this important target group. The agency had developed a patient database with information about 750 patients at the SHC who have received care from either a physician or the nurse practitioner and whose charts met the criteria of recent clinical service and a current, completed problem list. An additional 192 charts, developed since 1997 but currently inactive, were also entered. 

An analysis of the database revealed that these individuals had a total of 433 unique health conditions. The most common diagnosis was drug dependence and injection drug use was the most common health condition. Second, however, were issues of infectious disease: 251 of the 750 patients were HCV positive, for an overall HCV prevalence of 33%; and 18 of the 750 had been diagnosed with HIV, for an overall HIV prevalence of 2.4%.³⁶ 

These and other emergent findings can be of use to more than just the SHC staff as little is known about hepatitis C in this target population. It is hoped that findings such as these will become part of the research literature on this disease. 

3. Holistic Prevention and Care and Treatment Model 

The incremental growth of services at Street Health is in direct response to the multiple needs of the target group. The interaction of primary care, the needle exchange, counselling, education and support all create a holistic approach to both prevention and care and treatment, a model which works well with SHC clients. As one community stakeholder commented: 

This population is so marginal. It is so complicated. They are living in poverty, have no stable housing, and don't have access to a family doctor. Drug users are really stigmatized by health professionals.... People are blamed for their life. The programs have to be multi-faceted. 

As has already been noted, people come to SHC for the Methadone Clinic or the needle exchange and then receive a variety of services to help them improve their health status and life in general. 

Challenges

In their interviews, staff identified two significant challenges to an adequate response to hepatitis C in Kingston. These included the following: 

1. Not enough physician education 

The staff members interviewed identified a lack of physician education and as a result, not enough physicians were prescribing methadone or following up on those who were diagnosed. As one staff member commented: 

There are not enough family physicians. There is no place for people to be assessed. For example, if a person is tested positive, because there are not enough family physicians, there is no follow-up. If we refer a person to the liver specialist, they encounter the same problem. Physicians need to be educated. They don't know what to say. They don't know how to do an assessment. There should be some funding from Health Canada to educate the physicians. 

Another described how the lack of physician education had an impact on their agency: 

I often get frustrated. Most of the people don't talk to their family doctor nor to their family about hep C. A lot of family doctors miss the issue. Some people won't go get their blood test. They come to me. They are afraid of the stigma. Family doctors don't address this issue. People from the hep C clinic [at the hospital], come here to talk. They don't know where to go. 

One client described how a lack of physician education had affected his life: 

I was out of drugs for seven years. It [hepatitis C] destroyed me. I went for a blood test, they told me I had hep C. The doctor never told me that my chances to infect my partner were low; he just told me the bad things. I broke up with her. Within a month and a half, I lost everything. This was the pretext to start again, to take drugs again. 

This perspective was supported by a staff member who commented: 

Too often, their doctor doesn't offer any follow-up after they test positive for hep C because they are drug users. The doctors are passing judgment that the clients are doing something they shouldn't do. 

2. Issues associated with stigma 

The many individuals we interviewed repeatedly returned to issues associated with the stigma experienced by the SHC client group. As one community stakeholder explained: 

They feel shame about being infected, they feel unsafe [regarding sex]. They worry about transmission. They feel dirty. They already have more problems than they can deal with. 

One staff member suggested that even at SHC, clients continued to be afraid: 

Stigma is the biggest challenge they have to face. Our people have been treated differently because of their lifestyle, and because of the poverty. When they come in to see a doctor at the clinic here, they are impressed. When they come here to talk about their life, they're afraid to be judged. For example, a guy didn't want to go out with a woman who had hep C. People don't know enough about it. They have so many problems. Often hep C comes last. People who have it don't want to tell others. 

However, as one community stakeholder explained, the context in which the stigma occurs can have unexpected results. In prison, conflicting issues associated with stigma, such as HIV/AIDS and HCV, affected inmate decisions, as follows:

For example, in jail, an inmate has AIDS and hep C and he doesn't want to take the treatment for AIDS because of the stigma attached to it. The drug users in jail will share needles, even if they know they shouldn't; they are addicted. In jail, the stigma is less important for hep C than it is for HIV, because being a drug user is more acceptable than having same-sex relations. 

To begin to deal with the continued concern expressed by staff on the issue of stigma, the SHC has built on the results of their needs assessment and their experience with people who inject drugs to develop another proposal for funding which has been submitted to Health Canada's Hepatitis C Prevention, Support and Research Program, Prevention and Community-based Support Regional Project Funding. Entitled Reducing Harm/Reducing Stigma: A Hepatitis C Strategy for a Healthier Community, the purpose of this project is: 

To strengthen our community's understanding, quality of intervention and support for people infected with or at-risk of HCV infection. The proposed project will also enhance the capacity of the community to provide ongoing natural and sustainable, enhanced care networks. The strategy will serve as a focal point for a community-based response to issues of hepatitis C, as well as to the health and community determinants associated with hepatitis C. In particular, issues of poverty, marginalization, stigma, quality of medical care and drug use will be addressed by the strategy.³⁷

Concluding Remarks 

It appears that the SHC will continue to grow and pursue these issues of such concern to their marginalized population. Through experience, the agency has developed a recipe for success which suggests that sustainability and community adoption of hepatitis C issues will prevail. The staff's belief is that: 

Ultimately, it is the long-term capacity of the community to accept and understand injection drug users as citizens and valuable community members that will result in real improvements in both individual and social health.³⁸

References

1. Health Canada Hepatitis C Program Project Application Form, May 2001, p.8.
   
   
2. Health for All? A Primary Care Profile of the Street Health Centre, April 2002, pp. 6-7.
   
   
3. Health Canada Hepatitis C Program Project Application Form, May 2001, p.4.
   
   
4. Health Canada Hepatitis C Community-based Support Regional Project Funding Application Form, October 15, 1999. p.3. 
   
   
5. Personal communication. June 24, 2002.
   
   
6. Word On the Street (newsletter), Issue #3, February 2002, p.1.
   
   
7. Health for All? A Primary Care Profile of the Street Health Centre. April 2002, pp. 3 & 23.
   
   
8. Southeastern Ontario District Health Council.
   
   
9. Health Canada Hepatitis C Program Project Application Form, May 2001, pp.5-6.
   
   
10. Health Canada Hepatitis C Program Project Application Form, May 2001, pp.6-8.
    
    
11. Ford, P.M. M. Pearson and P. Sankar-Mistry. "HIV, Hepatitis C and risk behaviour in a Canadian medium-security penitentiary". QJ Med., 2000.
    
     
12. Ford, et al. 2000. 
    
    
13. Ford, et al. 2000. 
    
    
14. Dr. Mary Pearson, unpublished data reported in No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, pp. 9-10.
    
    
15. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, pp. 9-10. 
    
    
16. Health Canada Hepatitis C Program Project Application Form. May 2001. pp. 6-8.
    
    
17. Word on the Street. Vol. 1. Issue 1. October 2000. 
    
    
18. Street Health Coordinator Interview. May 7-9, 2002. 
    
    
19. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, p. 8. 
    
    
20. Kingston Hep C Prevention & Education Program Project Progress Report, HIV/AIDS Regional Services (HARS). December 2001. p. 5. 
    
    
21. Funding Approval Form, Population and Public Health Branch. 2000. 
    
    
22. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, p. 16-17. 
    
    
23. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, p. 17. 
    
    
24. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, p. 18-19. 
    
    
25. Hepatitis C Advisory Committee minutes. November 15, 2001. p. 1. 
    
    
26. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, p. 22. 
    
    
27. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, p. 30. 
    
    
28. Health for All? A Primary Care Profile of the Street Health Centre. Briefing submitted to North Kingston Community Health Centre. April 4, 2002. p. 9. 
    
    
29. Workplan: Streat Health Centre Hepatitis C Strategy, 2000-2002. Revised 20/09/00. p. 2. 
    
    
30. Public Health Agency of Canada - Ontario Region. Initial Quarterly Narrative Report Form. Fourth Quarter 2000-2001. p. 6.
    
     
31. No Common Cold, Hepatitis C Community Needs Assessment, Street Health Centre, December 2001, p. 18. 
    
    
32. Personal communication. October 23, 2002.
    
    
33. HepC Advisory Committee Minutes. May 1, 2002. p. 3. 
    
    
34. Health for All? A Primary Care Profile of the Street Health Centre. Briefing submitted to North Kingston Community Health Centre. April 4, 2002. p. 10. 
    
    
35. Health Canada Hepatitis C Program Project Application Form. May 2001. p. 5. 
    
    
36. Health for All? A Primary Care Profile of the Street Health Centre. Briefing submitted to North Kingston Community Health Centre. April 4, 2002. p. 16. 
    
    
37. Health Canada Hepatitis C Program Project Application Form. May 2001, p.5 
    
    
38. Health Canada Hepatitis C Program Project Application Form. May 2001, p.4

 

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