A Report on Governments' Responses to the HIV/AIDS Epidemic in Canada

A National Portrait

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4. A National Portrait

The provincial and territorial pictures, taken together, provide a portrait of the national effort to address HIV/AIDS. The following identifies and considers the key characteristics of that national portrait.

This portrait is dominated by one particularly important theme: the need for heightened public awareness of and enhanced political commitment to HIV/AIDS. Key HIV/AIDS advocates in virtually every jurisdiction said that HIV/AIDS appears to have fallen off the policy map as a result of:

• until recently, the declining number of new HIV positive test reports;

• the small number of people living with HIV/AIDS in jurisdictions other than BC, Alberta, Ontario and Quebec;

• the improvements in the treatment and care options available to people living with HIV/AIDS, and the misconception that HIV/AIDS is now curable; and

• the emergence of new priorities, the heightened concern with other pathogens and epidemics, and the focus on acute care rather than prevention and population health.

Key informants suggested these factors were being compounded by the public increasingly associating the epidemic with marginalized populations - injection drug users and Aboriginal people primarily - and with certain inner city neighbourhoods. These are not groups or geographical areas that elicit a great deal of public attention and public concern.

Key informants spoke of the importance of renewed political leadership and of building and restoring public awareness. Public awareness, political commitment and leadership are key to strengthening the policy response to HIV/AIDS, in part by obtaining the financial resources needed to address the threat, to deal with the epidemic's increasing complexity and to meet the needs of those living with HIV/AIDS.

4.1 Different Epidemics in Different Jurisdictions

The provincial and territorial pictures emphasize that there is not one epidemic in Canada but rather several epidemics.

First, at least at present if not in the future, there is one epidemic in four provinces where a very significant number of people are infected and living with HIV/AIDS. British Columbia, Alberta, Ontario and Quebec have accounted for 95% of all HIV positive test reports since 1985 while the remaining nine provincial and territorial jurisdictions have accounted for only 5%.¹¹¹

This distribution helps to explain why some jurisdictions are doing more to address the epidemic while others are doing less. British Columbia, Alberta, Ontario and Quebec each have elaborate strategies focusing specifically on HIV/AIDS. Each commits significant - although, according to some key informants, not necessarily adequate - resources to the epidemic and has a broad range of prevention, harm reduction, care, treatment and support services in place. Each also commits considerable resources to research and to building the knowledge base that is required to effectively address the epidemic. The federal government's own effort generally resembles that of these four jurisdictions. It too has a well-articulated strategy and commits significant resources to the efforts encompassed within that strategy. Recently, for example, it has committed to doubling the annual CSHA budget over the next five years.

Many of the other nine jurisdictions - all with smaller populations - also have strategies and services in place but not to the extent or with the level of funding of those identified above. Several, for example, provide no or only minimal funding to those organizations endeavouring to address the epidemic at the community level. These organizations have to rely on the federal government's AIDS Community Action or Hepatitis C programs for operational or project funding, or upon fundraising. Key informants were concerned that these jurisdictions were not prepared for the outbreak that could well occur some time in the future.

At the same time, however, the absolute number of reported cases can be deceiving. To indicate the threat posed by the HIV/AIDS epidemic in the different jurisdictions, it may be more useful to examine rates, i.e. the number of positive HIV test reports per 100,000 population. Table 6 presents this rate by jurisdiction, based upon 2001 population data from Census Canada and the number of newly reported HIV positive cases (2003) as presented by Health Canada. Figure 9 illustrates this pattern.¹¹² It is important to note, however, that Table 6 and Figure 9 present this rate only for reported cases and do not consider those cases that have not been diagnosed or reported. It is estimated that as many as one-third of all current cases have not been reported.

Table 6, Number of Positive HIV Test Reports/100,000 population, by Jurisdiction

Jurisdiction	Population, 2001	Number of HIV+ Test Reports, 2003	HIV+ Test Reports/ 100,000 Population
Canada	30,007,090	2,482	8.27
British Columbia	3,907,735	436	11.16
Alberta	2,974,810	145	4.87
Saskatchewan	978,935	36	3.68
Manitoba	1,119,585	111	9.91
Ontario	11,410,045	1,104	9.68
Quebec	7,237,480	621	8.58
New Brunswick	729,500	9	1.23
Nova Scotia	908,005	4	0.38
Prince Edward Island	135,290
Newfoundland & Labrador	512,930	19	3.70
Nunavut	26,745	6	6.47
Northwest Territories	37,360
Yukon	28,675

Second, the epidemic's character is different across jurisdictions. MSM remains the largest exposure category, while the IDU exposure category continues to be significant. Infections among people from HIV-endemic countries are more common in some jurisdictions than in others. Similarly the proportion of men to women who were diagnosed as HIV positive in 2003 differs from jurisdiction to jurisdiction. In Yukon, for example, the male/female ratio was 2:1 while in New Brunswick, Nova Scotia and Prince Edward Island, it was 7:1. Lastly, in three provinces for which appropriate data are available, the proportion of newly reported infections among Aboriginal people also varies considerably.

Importantly, even within a single jurisdiction, there are distinct differences in the epidemic across regions. In Quebec and Manitoba, for example, those living with HIV/AIDS are largely concentrated in Montreal and Winnipeg respectively. In Alberta, the epidemic in Edmonton is largely in the IDU exposure category and involves Aboriginal people while in Calgary it is largely in the MSM category and involves non-Aboriginal people.

This speaks to the importance of the pattern evident in most jurisdictions of regional or local health authorities and municipalities playing a larger role in planning the response to the epidemic and providing services. They may be in the best position to understand and respond to local needs.

At the same time, however, there is a concern about the epidemic being more of a priority to some regional or local health authorities than to others, and about access to services being inconsistent across these authorities. Some key informants suggested that:

• governments have fragmented responsibility for HIV/AIDS through regionalization;

• with regionalization, there is no clear champion promoting HIV/AIDS awareness, planning and action; and

• governments have few meaningful accountability measures in place to ensure consistency, to build cooperation across regions or to ensure that they all recognize the significance of the epidemic's threat.

While the regional authorities' priorities may simply reflect prevalence, they may ignore the reality that no community is immune and every community may have some people living with HIV/AIDS.

4.2 Articulating a Strategy

Most jurisdictions have articulated a strategy for addressing HIV/AIDS. Invariably these are strong and insightful documents that present useful information and incorporate what is currently known about HIV/AIDS, the conditions responsible for its spread and the efforts needed both to address the epidemic and to reduce its impact. In most cases - for example in Ontario and Nova Scotia - the strategies are the result of inclusive processes that helped to build partnerships and promote understanding among the different stakeholders. These strategies are generally welcomed by both government and community agencies for the information, direction, context and encouragement they provide.

Nevertheless some of these strategies have been challenged by some non-government HIV/AIDS advocates because:

• they are not accompanied by dedicated funding adequate to the tasks and actions they promote;

• they do not include measurable objectives and accountability requirements, and do not endeavour to ensure access everywhere in the province or territory;

• their implementation assumes that regional or local health authorities share a commitment to the strategy's goals and objectives; and

• in some cases, they do not appear to influence governmental policy and efforts in any meaningful way.

Strategies are very useful documents and serve a variety of purposes. However to be both credible and effective, quantifiable objectives, effective accountability measures and adequate resources are necessary. Very often, however, the jurisdictions' strategies do not include such elements.

Some jurisdictions have broadened the scope of their strategies so as to include efforts to address the broad range of blood-borne pathogens and STIs. This serves several purposes, for example reducing duplication and integrating efforts designed to achieve a common purpose. Some key informants also suggested that this approach may also serve to strengthen public awareness and political commitment given the more recent concern with hepatitis C, Severe Acute Respiratory Syndrome (SARS), West Nile Virus and other pathogens. This broader focus may enable community based organizations to access a broader range of funding sources and thereby enhance their capacity and stability.

Others suggest, however, that integrating HIV/AIDS with other pathogens could weaken the effort to address this epidemic particularly in light of HIV most commonly being transmitted, in most jurisdictions, through unsafe sexual behaviour.

4.3 Organization

In some jurisdictions - those with more profound epidemics - there are offices in government with staff directly responsible for managing the response to HIV/AIDS. Their responsibilities are extensive, i.e. to develop policy, coordinate and liaise with other government and community agencies, fund certain community or research activities, promote awareness in other departments and across government, advise on new clinical and social developments, and monitor the epidemic's course.

In most other jurisdictions, these HIV/AIDS-related activities are undertaken by a single individual and represent only one aspect of his or her responsibilities. In spite of the epidemic's less pronounced presence in those jurisdictions, these individuals may be hard pressed to remain ahead of the epidemic and give it the level of attention it requires.

At the same time, it appears few jurisdictions have standing interdepartmental committees for addressing issues related to the epidemic. This may limit the governments' ability to bring a population health approach to their efforts and to ensure that the range of supports are in place to reduce HIV vulnerability or to address adequately the needs of people living with HIV/AIDS. It may mean, for example, that social assistance policy may not adequately accommodate the needs of this group of people, or that housing policy is not consistent with the jurisdiction's HIV/AIDS strategy. It may mean that sexual health programs being designed for the schools are not benefiting from the insights of those for whom HIV/AIDS and other blood-borne pathogens are a priority.

Conversely, some jurisdictions have deliberately chosen not to create interdepartmental committees so as to avoid bureaucratizing their response to the epidemic. Instead, they prefer ad hoc committees focusing on specific issues, problems or needs.

Key informants invariably emphasized the importance of community-based organizations as partners in the effort to address the epidemic. At the same time, however, they often raised the issue of how stretched these organizations are at present because of:

• the increasing number of people living with HIV/AIDS;

• the level of unmet need; and

• the challenge inherent in reaching remote geographical communities and marginalized cultural communities.

The agencies' situation is exacerbated by their having to assume more and more responsibilities, for example for managing various harm reduction programs such as needle exchanges or for reaching out to those infected with or at risk of becoming infected with hepatitis C.

Agencies are willing to take on these additional responsibilities but they need adequate resources if they are to fulfill those responsibilities. They require the organizational stability that comes only with operational funding. This funding, key informants suggested, is vital for building the infrastructure and developing the capacity required to respond consistently to problems that are not going to disappear in the near future. Although ACAP meets this need for some organizations, many others are struggling.

Although many of these organizations have very good and long-term relationships with government funders, there is a perception that application, reporting and accountability requirements are growing more cumbersome. Some community organizations suggested that the involvement of regional or local health authorities is compounding their administrative burden. Too much time, effort and energy, they said, is being consumed by these requirements, and some organizations have declined the invitation to apply for project funding.

In terms of organizing the response to HIV/AIDS, some key informants wanted to see a more vigorous federal role, however this opinion was not endorsed by all the administrations. Clearly the federal government contributes to efforts at the provincial, territorial and community level, for example through ACAP, the First Nations and Inuit Health Branch or through funding national non-governmental organizations. Nevertheless some stakeholders feel that the federal government could be doing more to assist the provincial and territorial jurisdictions by:

• undertaking a national effort to enhance public awareness;

• expanding the current effort to assist jurisdictions - and the smaller ones in particular - to gather and analyze epidemiological data and to undertake the social research and cohort studies that will provide insights into the most vulnerable populations;

• strengthening the PHAC and Health Canada regional offices given their strong and supportive relationship with the provincial and territorial jurisdictions; and

• addressing the epidemic among particularly vulnerable populations or in areas where the problem's magnitude may require responses beyond the capacity of local authorities.

These propositions are not, however, endorsed by all governments.

4.4 Cooperation and Coordination

Most often and in most jurisdictions, there appears to be a strong relationship between departments and indeed between governments in addressing the HIV/AIDS epidemic. Interdepartmentally, as in Ontario, the relationship may be forged on an ad hoc basis and may be focused on specific issues. In other jurisdictions, such as in the north, the bureaucracies' relatively small size and informal structures may facilitate building effective relationships. In many jurisdictions, cooperation is enhanced by the relationship between individuals while in others, it may benefit from their experience with interdepartmental committees.

Intergovernmental cooperation is also strong with federal, provincial and even municipal governments - in Winnipeg, Prince Albert and Saint John for example - working together on harm reduction and other HIV/AIDS-related issues. In Atlantic Canada, PHAC and the four provincial governments work together and collaboratively within the FPT AIDS Atlantic Regional Committee. In Alberta, the federal, provincial and municipal governments work hand in hand not only with each other but also with community agencies to plan, to develop priorities and to allocate a common federal/ provincial funding pool. Other jurisdictions are experimenting with or developing similar structures that bring together the broad range of stakeholders in a common effort.

Often there is also a strong relationship and even a partnership between the provincial government and the regional PHAC and Health Canada offices. There are similarly strong relationships between the PHAC and provincial/territorial offices responsible for gathering and analyzing epidemiological data. There appears to be a less strong relationship, however, among those agencies responsible for correctional services and those more directly responsible for health and HIV/AIDS, or among those agencies having responsibility for the health of Aboriginal people on and off reserve.

This commitment to cooperation and coordination has faced a new challenge in recent years as jurisdictions have devolved ever greater responsibility for health services design and delivery to regional, district or local health authorities. The approach likely ensures that these services are sensitive to local needs. At the same time, however, regional or local autonomy - and the absence of meaningful accountability requirements relating to HIV/AIDS specifically - can mean fragmentation and less cooperation and coordination.

Key informants in some jurisdictions also suggested that Aboriginal organizations are not adequately involved in these cooperative and coordinated efforts. In some cases, the organizations themselves may not view HIV/AIDS as a priority. In other cases, the structures may not be culturally appropriate or the funding not adequate for their involvement. In all jurisdictions, the lines between the federal and provincial realms of responsibility and between services on and off reserve complicate the situation.

4.5 Testing, Prevention, Care and Treatment

Every jurisdiction has an array of services available to those living with HIV/AIDS. The issues in this regard relate more to access, to comprehensiveness and to adequacy.

All jurisdictions, for example, understand the population health concept and its importance in reducing vulnerability and addressing the epidemic through the long term. All appreciate that stigma and discrimination increase vulnerability to HIV infection and all, in some way, consider the epidemic within a human rights framework. Most promote principles relating to population health and to respect for human rights, and indeed the federal role in this regard is particularly pronounced. Yet all jurisdictions have to struggle with the challenge of implementing these principles. Improving population health is a long-term undertaking; addressing wait times is a short-term necessity. Funding most often goes to the latter rather than the former.

The jurisdictions are also similar with regard to their care and treatment services, with the differences being in terms of quantity and delivery systems. Most jurisdictions, for example, offer nominal and non-nominal testing for HIV and some offer anonymous testing as well. All test for HIV as part of their prenatal screens although, as indicated in Table 7, some employ an opt-in model while others use as opt-out model.

Table 7, Consent Models for Prenatal HIV Testing, by Jurisdiction

Jurisdiction	Opt-in	Opt-out
British Columbia	*
Alberta		*
Saskatchewan	*
Manitoba		*
Ontario	*
Quebec		*
New Brunswick113		*
Nova Scotia	*
Prince Edward Island	-	-
Newfoundland and Labrador		*
Nunavut	*
Northwest Territories		*
Yukon	*

Furthermore most jurisdictions provide some prevention and sexual health information - whether relating to HIV/AIDS specifically or to STIs more generally - in their schools. Those most directly responsible for HIV/AIDS, however, are not necessarily involved in these efforts in every jurisdiction.

The different jurisdictions all have programs or community agencies that target their efforts to particularly vulnerable groups, for example Aboriginal people, those from HIV-endemic countries or injection drug users. Most jurisdictions have important harm reduction programs in place, for example needle exchanges although in at least one jurisdiction, there is no government funding for the program. Some have mobile units that take the needles to where they are needed in order to ensure their availability. Some also have or are considering supervised injection sites as the next step in minimizing the potential for harm.

Jurisdictions also have programs to ensure that low income does not prevent people from accessing the pharmaceuticals needed to live with their HIV/AIDS. In one jurisdiction, these can be delivered by mail so as to protect client privacy. The issue with these programs, almost everywhere, is not access to the drugs but rather the timeliness of approving new drugs and the portion of costs that must be borne by some individuals.

Similarly treatment is available everywhere in Canada and in many places, arrangements have been made to bring the specialized knowledge of urban centres to small and remote communities. Nevertheless, treatment in these latter communities may be compromised by the stigma and discrimination still associated with HIV/AIDS and by the concern some people have with their condition becoming common knowledge. Key informants suggested this situation is particularly acute in many First Nations communities where the reality of HIV/AIDS has yet to be openly acknowledged.

Perhaps the sharpest difference among jurisdictions is in terms of the community care provided to people living with HIV/AIDS or vulnerable to HIV infection. Ontario, Quebec and Manitoba, for example, have community clinics that can offer a comprehensive and integrated array of housing, transportation, home care, hospice and other supportive services for those living with HIV/AIDS. Others offer little in this regard. Limited resources, the lack of public awareness and the absence of political commitment prevent some jurisdictions from responding in this comprehensive manner.

4.6 Knowledge

Every jurisdiction is involved in some efforts to build knowledge concerning HIV/AIDS, at least by gathering and analyzing surveillance data and then sharing these with PHAC. Provincial and territorial officials responsible for surveillance acknowledge both the important role played by PHAC in this regard and the quality of the Canadian system. They are all participating in efforts to explore whether definitions and data collection methods can be further standardized. These data are enriched by the cohort and other targeted studies funded by the federal and some provincial governments.

Some key informants would welcome more leadership and direction from the federal government in this regard, however this position is not endorsed by all administrations. Those who support this position would like to see the federal government working more energetically toward a standardized national system and working to minimize the differences evident across jurisdictions. They recognize, however, that the federal government has little authority in this area and can only encourage the other jurisdictions to track and report cases in certain ways. It has been suggested that such coaxing would be possible if the Field Surveillance Officer program was expanded or if greater funding was available specifically for this purpose.

Some would also like to see the federal government undertake more social research, cohort studies and trace-back studies that would build a better understanding of the epidemic's roots in the different jurisdictions. These studies would certainly contribute to efforts to effect behavioural change everywhere in Canada. They would also complement the work currently underway in those jurisdictions with the more pronounced epidemics. Both the Ontario and Quebec strategies, for example, place some emphasis on and provide some funding for research. Similarly British Columbia provides support for the BC Centre for Excellence in HIV/AIDS, the BC Centre for Disease Control and the Knowledge Transfer Unit at the University of British Columbia. Alberta, meanwhile, also funds a "community developer" position whose mandate is to assist community organizations to undertake research at the local level.

Key informants also suggested there is a need for efforts to develop more timely and dynamic information-gathering and research processes. Currently, new knowledge presented in academic and government-based studies is rarely new at the street level and within community agencies. These sources want more effort committed to the timely dissemination of knowledge, and to knowledge transfer and application. These can best be achieved, they say, through effective partnerships between researchers and community service providers, and between research institutions and community organizations. They further emphasized the importance of evaluation so as to ensure that the Canadian efforts can be continually improved.

It was suggested that researchers need to have a "service culture" if their work is to be of practical value.

---

¹¹¹ Canada, Health Canada, 2004:23.

¹¹² Population data are from the 2001 Census of Canada, http://www12.statcan.ca/english/census01/home/index.cfm. The number of positive HIV reports are from Canada, Health Canada, 2004:23. The rate/100,000 population is based on the formula: (number of reported cases in 2003/total population) x 100,000.

¹¹³ Policy is not yet in place in New Brunswick but the province is moving toward an opt-out model with informed consent.

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