The Actions:
What We Will Do Between Now and 2010

6. Enhance the Front-Line Capacity to Act Early and Stay the Course

Rationale

Leading Together is an ambitious plan. To meet our targets and achieve our goals, Canada must have the people, knowledge, skills, resources and structures to raise awareness; address the social factors driving the epidemic; step up prevention efforts; strengthen diagnosis, care, treatment and support; and provide global leadership. We must have the front-line capacity to act early -- to respond quickly to urgent needs and to stay the course -- in order to develop long-term sustainable programs that will stop the epidemic.

Canada already has an extensive network of dedicated people and organizations involved in advocacy, policy development, prevention, care, treatment, support and research. Over the next five years, we will be strategic in our efforts to enhance these front-line services. Our goal is to build and support a service system that can respond quickly to the changing and emerging needs of people living with HIV/AIDS and communities at risk, at home and globally. We must continually reassess our programs and structures to ensure that they are meeting needs and making effective use of knowledge and skills. For example, are the needs of people living with HIV/AIDS best met by HIV-specific programs or by more integrated programs that address a range of needs, such as HIV and hepatitis C or HIV and substance abuse problems? Are there more effective ways to plan and fund community-based programs? Are there better models for developing, sharing and integrating knowledge, coordinating services and responding to emerging issues?

In larger communities that have a significant population of people who inject drugs, for example, HIV-related services for people who inject drugs may be more effective when integrated with other harm reduction and treatment services, including outreach services, needle and syringe exchange programs, methadone maintenance therapy, addiction treatment services, hepatitis C treatment, case management, primary care and housing services. There is also a growing trend toward providing medical services for populations affected by HIV (e.g., gay men, Aboriginal people, people from countries where HIV is endemic) in a setting that can also provide cultural support, client advocacy, counselling, prevention and social support services (i.e., one-stop shopping for clients), particularly in larger centres that have a critical mass of people in a given population or community affected by HIV.

We must also provide the support and knowledge that front-line organizations need to strengthen their services, develop innovative models of care and support and develop linkages that will help meet the needs of people with HIV and communities at risk. This document focuses primarily on the following front-line services: peer-led initiatives, community-based AIDS organizations, health professionals, researchers and non-HIV-specific front-line services.

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Peer-led initiatives

From the beginning of the epidemic, people living with and vulnerable to HIV have played a vital role in establishing community-based programs and services, shaping provincial, territorial and federal policies and advocating for research and treatments. The International Guidelines on HIV and Human Rights established by UNAIDS and the Office of the United Nations High Commissioner for Human Rights ask all countries to ";ensure through political and financial support that community consultation occurs in all phases of HIV/AIDS policy, design, program implementation and evaluation." This guideline is consistent with the federal government's policy on citizen engagement. It is also consistent with many provincial, territorial and local policies and practices.

While gay men have a long history of organizing to provide both social support and political leadership, the same is not true of all other communities at risk of HIV -- although some recent efforts by drugs users to organize and advocate for harm reduction measures, such as needle exchange programs and a safe injection site, have been very successful (a number of studies show that peer-led or assisted interventions are more effective than health care provider interventions in populations of people who inject drugs).94

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Community-based AIDS organizations

"Non-governmental organizations are often thought to be more flexible and responsive to changing conditions, and thus more able to act quickly. Yet governments routinely impose on these agencies the same requirements, and sometimes methods, that make their own line operations less effective. More troubling is that government sometimes imposes accountability standards that it will not apply to itself. The result is often a non-government agency that is less effective than it could be. ...

If we believe that a non-governmental agency ... offers substantial advantage over direct government operations, we must resist the tendency to impose restrictions that remove that advantage."95

Since the first days of the epidemic, community-based AIDS organizations have been leaders in advocacy, policy development, community development, empowerment and service. They play a key role in our collective response to HIV. Over the past 20 years, most organizations have seen the number of people they serve increase significantly -- thanks to HAART, more people are living with HIV in Canada than ever before -- and their needs become more complex. However, funding has not kept pace; most organizations now operate with fewer resources than they had in the early 1990s. As a result, community-based AIDS organizations face a number of urgent pressures, including:

  • the need to work with other services and agencies, such as mental health services, addiction treatment and harm reduction services, housing programs, income programs, food banks, legal services and others,to help clients meet their basic needs and address social justice and human rights issues.
  • greater dependence on short-term project funding and fund-raised dollars, which limits the ability of organizations to provide long-term, sustainable services. For example, community-based AIDS organizations in Ontario report that about 55% of their funding is now from sources that are not stable or secure.96 The situation is compounded by the lack of funding for other health and social services required by people with HIV/AIDS and communities at risk, such as social assistance, mental health services, addiction treatment, methadone services and vocational counselling. According to a recent report from the Canadian Council on Social Development97, ";[t]he capacity of the nonprofit and voluntary sector to fulfil its important role in Canadian society is being undermined and eroded by new funding strategies," including a marked shift away from a core funding model, an unwillingness to fund administrative costs, shorter and more unpredictable funding periods and increased reporting requirements. As a result of the change in funding, ";much organizational time is now devoted to chasing short-term sources of funding, often at the expense of the organizations' mission and core activities." Most HIV organizations have seen a drop in fund-raised dollars due to donor fatigue and more competition.
  • cutbacks in services, In a survey of AIDS service organizations in Ontario, at least 50% reported that they have either cut back or eliminated some services, including prevention programming, education programming, "buddy" programs, employment services, transportation services, food banks and financial support/services. A significant proportion (25% to 50%) also reported cutbacks in counselling programs, community development, community awareness, community outreach, special events, the production/provision of safer sex materials and other resources, and emergency services. All organizations reported that they are no longer able to adequately meet client needs in any of their key roles.98
  • high levels of staff burnout and turnover, due to low salary levels compared to other health and social service agencies, limited opportunities for advancement, increasingly complex client needs, the uncertainty associated with working on short-term contracts, lack of benefits and organizational instability. High staff turnover rates result in lack of continuity of care, lower-quality services, higher recruitment and training costs, and fewer resources for front-line services.
  • problems recruiting volunteers, due in part to competition with other health and social service organizations for a diminishing pool of volunteers, as well as the public perception that HIV is not as important an issue as it once was. Some organizations are also having difficulty matching volunteers to tasks for clients who have increasing and ongoing needs.
  • an increase in administrative workloads to account to funders for the effective use of funds.
  • less ability to advocate for clients and for systemic change because of the challenges in developing advocacy skills, the lack of funding for advocacy efforts, and concern that funders may not renew short-term funding if organizations advocate.
  • the need for faster access to information, research findings and skills that can be used to enhance programs and services.

To enhance our HIV prevention and support programs, these issues must be addressed.

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Health professionals

Canada has a shortage of health professionals willing to work with people with HIV. Most HIV care is provided by a small number of infectious disease specialists and some primary care physicians, many of whom are located in large urban centres. We also lack health professionals who can provide culturally appropriate and linguistically accessible services for some communities, such as Aboriginal people or people from countries where HIV is endemic.

The lack of health professionals in this field is exacerbated by the overall shortage of physicians and nurses (Romanow 2002) and by the fact that a significant proportion of those who have been providing care since the beginning of the epidemic are now nearing retirement age.

Because of the complexity of HIV care, it is difficult for professionals who only see a small number of clients to remain current. This situation is particularly troublesome for professionals working in smaller communities, where they do not have easy access to specialists who can provide information and advice.

To enhance our front-line capacity to provide HIV care and treatment, we must address the issues that keep health professionals from this field, including:

  • discomfort working with the marginalized populations most affected by HIV
  • lack of education in HIV care
  • lack of confidence in their ability to manage the complex care that people with HIV/AIDS need
  • lack of access to expert advice and support
  • reimbursement systems that do not acknowledge the time required to provide complex HIV care

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Researchers

As part of the UNGASS Declaration of Commitment on HIV/AIDS, Canada agreed to:

  • increase and accelerate research on HIV vaccines and increase research to improve prevention, care, treatment, women-controlled methods of prevention, microbicides and the means to prevent mother-to-child transmission
  • develop approaches to monitoring treatment efficacy, toxicity, side effects, drug interactions, resistance and the impact of treatment on HIV transmission and risky behaviour
  • strengthen the process of cooperation and transferring research findings and best practices to those who can use them

Over the past 20 years, Canada has developed a group of highly skilled researchers who have made major contributions to global efforts to understand and stop HIV with a relatively small research investment. Canadian research contributions include the discovery of 3TC; the creation of the Canadian HIVTrials Network and its work, including establishing the efficacy of protease inhibitors in antiretroviral combinations; the generation of knowledge of HIV immunology among sex workers in Africa; major work on drug resistance; contributions to international vaccine research; studies to identify the behavioural factors that contribute to the spread of HIV in different populations; and research on harm reduction initiatives for people who use injection drugs. Canadian researchers are actively involved in basic, clinical, epidemiological and psychosocial/behavioural research in HIV, and in surveillance, monitoring and evaluation. Canada has also established a strong foundation in community-based research, which directly involves people living with HIV and community-based organizations in identifying research questions, conducting research and using research findings to improve services. Through the Canadian Association for HIV Research, Canadian HIV researchers work together to organize and coordinate their research efforts.

To enhance our research capacity, we must address a number of challenges, including:

  • Canada's role in global research efforts. As only one partner in international HIV research efforts, Canada must identify specific roles that will make the best use of our research skills/resources and avoid duplication.
  • the urgent need to attract new researchers to HIV. Canada must continue to develop, mentor and support HIV researchers.
  • the need for support for community-based research. This field is in its infancy and needs time and resources to achieve its potential.
  • the lack of funding for HIV research. Currently, Canada lags behind many other countries in its spending on HIV-related research. For example, while Canada spends about $1.3 million annually on vaccine research, the United States allocates US$400 million (approximately C$485 million) and France €8 million (approximately C$12.7 million).99 , 100
  • the gap between research and practice. Research findings must be used more effectively to improve programs and services.
  • the pressing need to develop safer, more effective treatments, and the challenge posed by the collision of two major epidemics: HIV and hepatitis C (see section 4).
  • sustainability challenges. Researchers burn out or otherwise leave the field. More support and security is needed for this demanding work.

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Other agencies that share responsibility for serving people with HIV

The front line is not limited to HIV-specific services. People living with HIV/AIDS and communities at risk use many other health and social services, including mental health services, addiction and harm reduction services, housing programs, food banks, shelters, women's programs, youth services, settlement services, legal services, home care services, palliative care programs, rehabilitation programs and services and others. To enhance the ability of these agencies to share responsibility for meeting the needs of people living with HIV/AIDS and communities at risk, and to create a true system of services, we must address the following issues:

  • the need for non-HIV-specific agencies to have better information about HIV and the needs of individuals and communities affected
  • any discomfort these agencies may feel in working with people and communities affected by HIV
  • the need for these agencies to receive appropriate levels of funding to fulfil shared roles

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Desired outcomes

  • All organizations and individuals serving people with HIV/AIDS and communities at risk have the skills, knowledge, resources and capacity to respond to changing and emerging needs.
  • People living with HIV/AIDS and communities at risk have a stronger voice in the programs and services that affect their lives and are leaders in Canada's response to HIV/AIDS.
  • Community-based AIDS organizations are leaders in developing innovative models of service that address the root causes of HIV infection and other illnesses, in identifying PHA needs from diagnosis to end of life and in developing services to meet those needs.
  • The capacity of community-based AIDS organizations to address social justice and human rights issues and to undertake both individual and systemic advocacy has increased significantly.
  • Canada has an adequate number of health professionals who are knowledgeable about HIV and willing to provide care.
  • Canadian researchers continue to make significant and measurable contributions to the world's knowledge of HIV and to efforts to treat and stop the disease.
  • Other agencies that provide services for people with HIV/AIDS and communities at risk have the knowledge and skills to be part of an effective service system.

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Targets

By 2010:

Peer-led initiatives

  • Effective, adequately resourced peer-led organizations are in place locally, provincially/territorially and nationally.
  • All organizations funded to provide HIV-related services have policies to ensure the meaningful participation of people with HIV/AIDS and communities at risk.
  • People living with HIV/AIDS are represented on all groups that advise governments and non-governmental organizations and that plan and deliver HIV programs and services.
  • People living with HIV/AIDS and members of communities at risk play a lead role in designing and delivering their services.

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Community-based AIDS organizations

  • Community-based AIDS organizations have the knowledge, skills, resources and capacity to respond to the complex health and social needs of people living with HIV/AIDS and of communities at risk.
  • Community-based AIDS organizations are leaders in addressing social justice and legal, ethical and human rights issues and in developing working relationships with other health and social services that reflect their shared responsibility for the health and well-being of people living with HIV/AIDS and of populations at risk.
  • Community-based AIDS organizations are able to attract and retain highly skilled and highly motivated staff.
  • Community-based AIDS organizations and peer-led organizations across Canada have the resources they need to advocate on behalf of individuals and for systemic changes that will benefit populations at risk.

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Health professionals

  • The number of health professionals providing care for people with HIV/AIDS increases.
  • The proportion of health professionals who receive education about HIV as part of their initial and continuing training increases.
  • Primary care providers have easy access to support and advice from specialists.

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Researchers

  • Canada has a comprehensive, targeted HIV research plan.
  • New researchers are attracted to, and remain in, the field and make measurable contributions.
  • Canada increases its contribution to global efforts to improve HIV/AIDS treatments and develop microbicides and HIV vaccines.
  • Research findings have a direct and measurable impact on practice.
  • Canada provides a dynamic and supportive environment for HIV researchers across all disciplines.

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Other service providers

  • Staff working in other agencies report greater understanding of the issues facing people living with HIV/AIDS and populations at risk.
  • Staff working in other agencies report greater comfort and confidence in providing services to people living with HIV and populations at risk.
  • People living with HIV report greater satisfaction with the services they receive from other agencies.

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Actions

General

6.1 Develop funding models that will enhance the front-line capacity to act early and stay the course by decreasing reliance on short-term project funding and enabling longer-term planning and action.
6.2 Involve people with HIV/AIDS and communities at risk in identifying priorities, planning and delivering of all HIV programs and services (e.g., diagnosis, care, treatment, support, research) and in advising governments and other decision makers.
6.3 Provide both volunteer and employment opportunities for people living with HIV and members of populations at risk.

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Peer-led initiatives

6.4 Provide support to self-governing organizations and advocacy groups for people living with HIV/AIDS across Canada.
6.5 Provide support to self-governing organizations and advocacy groups for communities at risk.
6.6 Provide capacity-building programs to help people living with HIV/AIDS and communities at risk develop the skills to play a lead role in planning, delivering and evaluating HIV-related research and services.

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Community-based AIDS organizations

6.7 Increase the capacity of community-based AIDS organizations and peer-led organizations to address social justice and human rights issues and to advocate for individuals and communities.
6.8 Develop effective working relationships among AIDS organizations and other agencies that share responsibility for serving people with HIV/AIDS and populations at risk.
6.9 Implement and evaluate innovative organizational models that have the potential to meet the complex health and social needs of communities at risk and people living with HIV/AIDS from diagnosis to end of life.
6.10 Implement strategies to attract, train and retain skilled staff and volunteers.

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Health professionals

6.11 Ensure that all health and social service professionals receive some education about HIV and its management during their training and have access to continuing education in HIV treatment.
6.12 Develop education, support, mentorship and other programs to overcome the barriers to attracting and retaining the appropriate number/mix of health professionals in HIV diagnosis, care, treatment and support.
6.13 Explore the potential to use technology to link primary care providers, particularly those in small communities, with infectious disease specialists.
6.14 Explore the potential to use technology to link primary care providers, particularly those in small communities, with infectious disease specialists.

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Research

6.15 Develop an HIV research action plan for Canada that will:
  • identify Canada's strategic research priorities to 2010, based on the needs of people living with HIV/AIDS and communities at risk
  • define, based on our comparative research strengths, how we will fulfil our UNGASS commitments and strategically increase Canada' s contribution to international research efforts to develop new treatments, HIV vaccines and microbicides
  • encourage collaboration among researchers to achieve common goals
  • identify strategies to attract and mentor young researchers
  • identify strategies to ensure that research findings are shared and that new knowledge is incorporated into practice
  • enhance our capacity to evaluate interventions in terms of their effectiveness in increasing the health and well-being of people living with HIV or in stemming the epidemic
  • provide funding at levels that will optimize output
  • maintain researchers in Canada and working in the field.

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Other agencies

6.16 Provide the education and support non-HIV-specific agencies/service providers need to fulfil their role.
6.17 Develop models of care that make effective use of the knowledge, skills and resources of other agencies/service providers.

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Footnotes

94
See JP Grund et al., supra, note 58

95
Skirrow J. Lessons from Krever - A Personal Perspective. Canadian HIV/AIDS Policy & Law Newsletter 1999; Vol. 4, No 2/3. Available via www.aidslaw.ca.

96
Ontario AIDS Network. Stemming the Tide: The Case for More Investment in Community-based HIV/AIDS Prevention and Support Services. January 2004.

97
Scott K. Funding Matters: The Impact of Canada's New Funding Regime on Nonprofit and Voluntary Organizations. Summary Report. Canadian Council on Social Development in collaboration with the Coalition of National Voluntary Organizations. 2003.

98
Ontario AIDS Network. Stemming the Tide: The Case for More Investment in Community-based HIV/AIDS Prevention and Support Services. January 2004.

99
Standing Committee on Health, Strengthening the Canadian Strategy on HIV/AIDS. Canada. 2003.

100
Canadian dollar amounts estimated as of January 2005.

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