No More Silos: A good practices guide on undertaking an integrated approach to HIV and hepatitis C

NO MORE SILOS A good practices guide on undertaking an integrated approach to HIV and hepatitis C

Writer Paul Sutton Editors Kimberly Bennett Shane Patey Design and layout Pulp & Pixel Creative, www.pulpandpixel.ca Translator Christopher Ellis The survey and interview questions for this project were developed with the assistance of a national stakeholder committee, comprised of: Patricia Bacon, Blood Ties Four Directions Centre Rob Boyd, OASIS Program, Sandy Hill Community Health Centre Dr. Gail Butt British Columbia Centre for Disease Control Dr. Curtis Cooper, University of Ottawa Christian Hui, CTAC Ed Jackson, CATIE Sherri Pooyak, CAAN Colleen Price, Independent Advisor Dale Schenk, Nine Circles Community Health Centre Dedicated to Karen Burton and Zoë Dodd Permission to Reproduce This document is copyrighted. It may be reprinted and distributed in its entirety for non-commercial purposes without prior permission, but permission must be obtained to edit or otherwise alter its content. The following credit must appear on any reprint: This information was provided by CTAC. For more information contact CTAC at 1-877-237-2822 or www.ctac.ca.

CTAC is Canada’s national civil society organization addressing access to treatment, care and support for people living with HIV and hepatitis C. CTAC meaningfully engages community members, service providers, policy-makers and researchers to identify, develop and implement policy and program solutions. © 2014, CTAC (Canadian Treatment Action Council) All rights reserved Contact CTAC: 1-877-237-2822 • www.ctac.ca

Contents Executive summary

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Integration: What does it mean?

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—— How to use this Guide

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—— But HIV and hepatitis C aren’t the same!

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We do what makes sense: Responding to community need

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Toward integration: Organizational and fund development

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Promising programs: Moving from an HIV and hepatitis C-centred approach to addressing broader social and structural determinants of health

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—— Co-location or Coordination: Which Is the better practice?

—— Sexual transmission of hepatitis C for HIV-positive gay men: Integrating an area of increasing need into Your Programming

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Common Approaches: Integration and capacity training

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Conclusion

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Executive summary No More Silos: A Good Practices Guide on undertaking an integrated approach to HIV and hepatitis C identifies practices community-based organizations, community health centres, clinics and other health and social services are engaging to do HIV and hepatitis C work concurrently. No More Silos has two goals: to assist organizations considering undertaking an integrated approach to HIV and hepatitis C for the first time as they identify ways in which an integrated approach may be relevant to them, and to help organizations that have practiced HIV and hepatitis C integration for a long time to reflect on their practices and identify opportunities for expansion or enhancement.

The survey and interview questions used to guide content development for No More Silos were developed in collaboration with a national stakeholder committee comprised of people living with HIV and hepatitis C, service providers, policymakers and researchers who reviewed existing literature (e.g. program evaluations and relevant published studies), as well as the responses from a national stakeholder survey and a set of key informant interviews on the experience of undertaking an integrated approach to HIV and hepatitis C in varied organizational settings. More information about how this Good Practices Guide was developed is included in the introductory chapter (Integration: What does it mean?).

No More Silos was developed throughout 2013, during which the Public Health Agency of Canada (PHAC) had announced it combining their HIV and hepatitis C funding streams, moving toward a sexually transmitted/ blood-borne infections framework. Many people we engaged with while developing this Good Practices Guide were concerned, anxious and uncertain how changing funding arrangements may affect the work we do in our sector, especially work organized around HIV or hepatitis C as individual disease conditions. Importantly, these anxieties were also felt by organizations who have practiced an integrated approach for a long time—after all, reorganization or contraction of funding tends to, or at least has the potential to, affect everyone—and in the introductory chapter, as well as throughout the Guide, we attempt to address what we heard in these anxieties.

key informant interviews we conducted, we learned that organizations that have undertaken an integrated approach to HIV and hepatitis C have a number of general experiences in common (e.g. one or more members of the Board of Directors took an interest in increased hepatitis C-related issues being seen at a community-based organization or community health centre (CHC) and championed expanding or creating new programs in order to fulfill unmet needs), but fewer concrete good practices in common. As a result, the good practices shared in this guide largely reflect these more general lessons learned—including how and why organizations recognized they needed to do HIV and hepatitis C work concurrently, what they did to do HIV and hepatitis C work together, and strong strategic development processes they have undertaken to keep their organizations healthy, sustainable, and an integral part of the local, provincial/territorial, and/or national HIV and hepatitis C responses.

However, this Guide was conceived prior the PHAC’s announcement, and the goal of this document is to document the experience of organizations that have experienced success from undertaking an integrated approach to HIV and hepatitis C, and share lessons learned. From the national stakeholder survey and

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In addition to the introductory chapter, Integration: What does it mean?, which provides a background on what integration means in today’s public policy enviornment, as well as what it has meant to the HIV and hepatitis C stakeholders we engaged when developing this guide, the good practices in No More Silos are presented in four additional chapters.

“We do what makes sense”: Responding to Community Need identifies practices organizations have

undertaken to identify unmet needs in the communities they serve through formal and informal means. Some practices organizations used to identify unmet needs were:

on current organizational strengths to identify what existing programs and services could be expanded to • Reflecting meet the needs of people living or at immediate risk of HIV or hepatitis C

• Conducting formal and informal needs assessments to published epidemiological data or engaging researchers at your local academic centre to conduct research • Referring on established or emerging issues facing the people you work with people working in a Ministry of Health or public health setting, implementing new programs or consolidating • For existing ones in various areas of the HIV or hepatitis C response to increase central leadership, including strategic planning, program guidance and capacity support (e.g. central coordination of multidisciplinary care teams)

Toward Integration: Organizational and Fund Development identifies conditions that led to organizations successfully integrating HIV or hepatitis C into their previous mandate, including fund and resource development tips.

Some practices organizations used to successfully integrate approaches to HIV and hepatitis C were:

buy-in across an organization through strong leadership, extensive consultation and meaningful engagement • Generating of all constituencies (e.g. staff, members, partners), and clear expression of new or emerging visions for the organization people with lived experience, Board of Directors members, key organizational partners, and/or • Champions—either senior management—gaining support and acceptance for an integrated approach to HIV and hepatitis C

the courage to pursue an integrated approach even in settings where both HIV and hepatitis C are not reflected • Having in an organization’s letters patent, but ensuring integration is addressed and accepted at a members’ meeting to ensure all stakeholders, including people living with HIV and hepatitis C, have a say in how an organization operates

strategies in fund and resource development, including identifying opportunities to transition pilots into • Innovative core funded projects, reserving project funding for pilot initiatives, as well as locating multiple funding sources within governments as well as from the private sector

Promising Programs: Moving from an HIV and hepatitis C-centered approach to addressing broader social and structural determinants of health identifies good practices (e.g. programs and services)

organizations across Canada that have successfully undertaken integrated approaches to HIV and hepatitis C are doing, including:

existing, well-functioning programs with the capacity to expand to people living with or at immediate risk • Identifying of HIV or hepatitis C that could improve health outcomes for either group

new partnerships to support an integrated approach, and sustaining or expanding existing partnerships • Building between your organization and other groups

the gap between community-based organizations (CBOs) and clinical services by strengthening and/or • Bridging standardizing referral pathways—either by coordinating services between sites, or co-locating services traditionally

offered by one organization (e.g. an infectious disease clinic at an academic health centre) at another site (e.g. a CBO)

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peer programs that engage the skills of people with lived experience, especially in peer health navigation • Expanding and outreach functions—structuring positions so they provide fair compensation, clear capacity building objectives, and a pathway to more stable or permanent work

HIV and hepatitis C-related information in health promotion interventions, especially needle and • Coordinating syringe programs, testing environments—and, increasingly, incorporating hepatitis C into programs that engage HIVpositive gay men

treatment support programs that build on lived experience and resilience of accessing and adhering to HIV • Providing and hepatitis C therapies advisory bodies comprised of people with lived experience in organizational or program structures, such • Incorporating as a Patient Advisory Board

Common Approaches: Integration and Capacity Training identifies practices organizations across Canada are using to provide capacity training to staff and volunteers, such as:

foundational training areas for staff and volunteers, both at onboarding as well as a part of ongoing staff/ • Identifying volunteer development

a variety of training opportunities appealing to numerous learning styles, including workshops, conferences, • Providing preceptorships and web-based learning (e.g. webinars)

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Integration:

What does it mean?

If you work in HIV or hepatitis C or in health and social services more generally, you can’t help but have heard the word “integration.” But what does it mean? It is likely you’ve heard the word “integration” used to describe any of the following, often interchangeably: can refer to merging funding sources or • Integration organizational mandates to address HIV and hepatitis C in a broader sexually transmitted and blood-borne infection (sometimes referred to as “STBBI”) framework.

can refer to merging funding streams • Integration or departments within the public service, usually to

promote efficiency, often with the stated intention of making the health system “more patient-centric” or making patient “pathways” through the health system easier to navigate.

often, integration can refer to integrating health • Less services into a broader, existing chronic disease model,

reflecting the current reality of HIV and hepatitis C as chronic, manageable conditions—for people who have access to treatment and health services.

can refer to integrating two or more social • Integration services, either by co-locating them in one organization

or clinic, or coordinating patient pathways between both organizations, to improve standards of care.

This Good Practices Guide defines integration as doing HIV and hepatitis C work together. To discuss good practices from across Canada on undertaking an integrated approach to HIV and hepatitis C, this Guide brings together good practices, as well as practical challenges, discussed by the following groups: stakeholder committee, who advised • Athe national project, including people living with HIV

and hepatitis C, service providers, policy-makers, clinicians and researchers from across Canada, each of whom had experience doing HIV and hepatitis C work together;

to a national stakeholder survey that • Respondents included people working in HIV and hepatitis C across Canada;

group of people we interviewed who are working in • Aprograms or settings that have demonstrated success doing HIV and hepatitis C work together

The good practices identified in this Guide are intended to help organizations starting to undertake an integrated approach to both HIV and hepatitis C identify some existing approaches that might work for them in their context. It will also provide organizations that have been undertaking an integrated approach for a while an opportunity to reflect on what’s working and what could be improved. This Guide is not exhaustive, nor is it prescriptive—to put it another way, just because we’ve made a Good Practices Guide about doing HIV and hepatitis C work together, it doesn’t mean the only way to work is by integrating HIV and hepatitis C. Additionally, while we surveyed and interviewed clinics, CHCs, AIDS service organizations (ASOs) and other NGOs, as well as policy-makers on integrated approaches to HIV and hepatitis C, most of our respondents, as well as most of our national stakeholder committee, brought experience from CBOs and CHCs. As a result, the majority of this Guide is slanted toward CBOs and CHCs, and while some of what’s included here is relevant in clinical settings, more work needs to be done to identify good practices on integrating HIV and hepatitis C in the clinic.

One of the reasons this Guide is heavily slanted to the needs of CBOs is because it was developed in response to PHAC’s announcement that it would be merging its HIV and hepatitis C community funding. While this project was conceived of prior to that announcement, our project development process very much kept in mind that organizations across the country are figuring out how to operate in a changing funding and policy environment.

As a result, while this is a Guide that profiles organizations and programs that have successfully addressed HIV and hepatitis C together, the discussions, included here, of the processes by which organizations decided to do HIV and hepatitis C work jointly may be just as helpful—if not more so—than the practices themselves.

This introductory chapter, however, provides background on the policy context that has led us to thinking about integration in this political climate. It is important background, but readers interested in diving into a more in-depth discussion of good practices should skip ahead to the next chapter (We do what makes sense).

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How to use this guide Each chapter of this Good Practices Guide is split into four sections:

• Issues: In addition to providing a background of the good practices discussed throughout the chapter, the Issues section

describes current strengths and challenges experienced by organizations we engaged who are working in the area, and some broad context for organizations to keep in mind as they consider further undertaking an integrated approach to HIV and hepatitis C.

• Practices: This section includes a set of good practices in undertaking an integrated approach to HIV and hepatitis C

that were identified by the national stakeholder committee who oversaw this project, as well as through our national stakeholder survey and a set of key informant interviews. The Practices section identifies tried-and-true interventions many organizations across the country are already undertaking successfully, what it takes to make them work, and some of the pitfalls organizations may face.

• Questions: Each chapter closes with a set of overarching questions for all organizations to think about—whether an

integrated approach to HIV and hepatitis C is something an organization has pursued for a long time or this is a new priority. In addition to being an opportunity for reflection, these questions—while not exhaustive—can also be used as a “checklist” to guide your organization’s integration process, helping you keep on track.

• Resources: Resource, including websites, reports, evaluation reports, program guides, etc. identified in the any of the

sections above are included at the end of each chapter for easy reference—should you want to dive in further and see if a given program could be relevantly applied to your own organization, or if you’re building a funding application and need a starting point for your evidence base/references.

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We’re in an “integration moment” in public policy

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hy are we talking so much about integration now? While we mentioned that the PHAC’s decision to merge funding streams has resulted in a lot of talk and anxiety across the sector, PHAC’s decision is just one symptom in a larger moment that’s happening in public policy. And while the good practices discussed in this Guide have very little to do with our current policy moment—after all, organizations that have undertaken an integrated approach to HIV and hepatitis C have been doing so for a long time, for perfectly good reasons, to fulfill substantial unmet needs—it is important to be aware of how trends in public policy have the ability to shape, and indeed are shaping, our responses to HIV and hepatitis C. First, though, it is impossible to separate integration from neoliberal public policy. Neoliberalism refers to economic policy that loosens financial regulation, allowing the finance industry, and other related corporations, to seek higher profits in a “freer” marketplace. One precondition for neoliberal economic policy is to lower taxation, both corporate and individual, allowing corporations and some individuals more cash flow to invest in the stock market or in their own company or companies. Since the introduction of neoliberal economic policies in the 1980s by the Mulroney government in Canada—as well as leaders like Ronald Reagan and Margaret Thatcher the developed world—the balance of global wealth invested in the finance industry and corporations through the stock market has risen dramatically. At the same time, the available tax revenues to pay for public services—like health and social services for people living with and at immediate risk of HIV and hepatitis C—have dropped dramatically.

This reduced amount of tax income for governments to spend on health and other social services has resulted in several transformations of the public service—especially the amount of services and assistance available. In Canada, the first dramatic shift came in the 1990s during the Chrétien government, when Finance Minister Paul Martin oversaw a dramatic reduction of federal services, cutting budgets and “downloading” formerly federal responsibilities onto provincial and territorial administrations. To cope, provinces and territories cut services, which had a dramatic ripple effect, resulting in longer hospital wait times, huge class sizes in elementary and secondary schools, reduced inspections of water treatment facilities and power plants, privatized Crown corporations, and dramatic increases in post-secondary tuition fees, to name just a few changes.

Yet, when the financial crisis of 2008 hit, governments were faced with a dicey situation: they needed to find ways to reduce the cost of public services again, but couldn’t do so by dramatically reducing taxes. While many governments across Canada have dramatically reduced corporate taxes

since 2008, they are attempting an additional strategy: reorganizing public services, often through “integration,” to make them more “efficient” and cost less.

A 2013 report by the Mowat Centre in the University of Toronto’s School of Policy and Governance, co-authored with the global management consulting firm, KPMG called, The integration imperative: reshaping the delivery of health and human services, identified five major trends the public sector is undertaking to better integrate and achieve efficiencies: understanding client pathways, focusing on outcomes (including measurement), intergovernmental integration (reducing duplication between the federal and provincial government, for example), intragovernmental integration (reducing duplication between the Ministry of Health and the Ministry of Community and Correctional Services, for example), and place-based integration (such as locating multiple services used by the same people in one centre; in the context of HIV and hepatitis C, see “Co-location or coordination” in the “Promising Programs” chapter). Some of these initiatives make sense, however, it is important to recognize these initiatives are motivated primarily by the imperative to save costs, and any improvements to the service user experience will likely be coincidental.

While it is highly unlikely these changes—which use the language of “patient-centricity” and increasing “patient pathways”—will save funds in the long term, it is important to note that some of the strategies, like those identified in the KPMG-Mowat Report, are similar to those currently being used in the HIV and hepatitis C sector, like reorganizing CHCs and CBOs to function as one-stop-shops for people living with HIV and hepatitis C, and using technology (like webinars and web portals) to conduct capacity training for people with lived experience and service providers.

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HIV, hepatitis C, and neoliberalism

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onsidering neoliberal economic policies emerged in the 1980s—the same time as HIV and hepatitis C—it is also important to ask: in what ways has neoliberalism shaped our responses to HIV and hepatitis C in particular?

Keeping in mind that neoliberal public policy entails the withdrawal of financial support for public services, neoliberal impacts on the Canadian HIV and hepatitis C responses are quite clear.

In fact, when we think about the HIV and hepatitis C sectors in Canada, we often think of dedicated individuals coming together to respond to a crisis, rather than governments identifying and responding to unmet needs. The queer community was instrumental in building the HIV response—an entire parallel health system to ensure people did not have to suffer homophobia and vicious stigma while they also fought the disease. Informal support networks turned into community support and action groups, which formalized as ASOs that wrote the book on safer sex and substance use, while providing practical assistance to people living with HIV. It was only later that the medical community and public health infrastructures took notice, and over time began to devote substantial attention to research that has resulted in therapies that render HIV a chronic, manageable illness—for those who are able to access treatment.

In 1989, when hepatitis C was identified, a similar community effort took place. While many people contracted HIV because of the tainted blood scandal, even more contracted hepatitis C. The Canadian Hemophilia Society led the charge, creating educational materials and providing support to its members, but also spearheaded a legal challenge which, in the end, not only provided compensation for those affected by the Canadian blood donation system’s failures, but set the framework for federal hepatitis C funding. From there, provinces and territories have supported the development of treatment, support and health promotion services for people living with and at immediate risk of contracting hepatitis C, although in our this support has never been sufficient considering the scale of the epidemic in Canada.

As a result, a vast network of HIV CBOs (otherwise called ASOs) exists today, supplementing an array of health and social services, including food banks, assistance navigating income support and housing security, provision of harm-reduction supplies and substance health services, and sexual health information appropriate to gay men, HIV-positive women, commercial sex workers and, in some cases, trans people. And while these CBOs are of the utmost

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importance in our responses to HIV and hepatitis C, they largely exist because of two historical forces at play in the 1980s: a health and social service system that was too homophobic and too stigmatizing to drug users to provide care for people living with HIV and hepatitis C, and a neoliberal public policy environment that only begrudgingly invested in HIV and hepatitis C—and has never yet since invested sufficient resources to address either epidemic.

We see the evidence of this today: 30 years into the HIV epidemic; we face a political situation where access to social housing has flatlined or declined for more than a decade, in which social assistance rates are frozen, where disability accommodation legislation is not advanced enough to allow many people living with HIV to return to work; where people living with HIV are increasingly targeted by a criminal law that doesn’t comprehend the science of transmission, and where health services for drug users either don’t exist or are insufficient due to limited funds or lack of political will.

Thus, it is important to learn how and why CBOs and CHCs have strengthened their response by undertaking an integrated approach to HIV and hepatitis C.

What “integration” means in the HIV and hepatitis C sectors

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he good practices shared in this Guide come from organizations who have, for a variety of reasons, determined that they can meet the broad health needs of people living with and at immediate risk of HIV and hepatitis C by addressing both disease conditions in their programs and services. Indeed, when asked what works well when undertaking an integrated approach to HIV and hepatitis C, the respondents to our national stakeholder survey said the following:

and hepatitis C affect “similar populations,” and • HIV we can reach them through common interventions

(e.g. testing, needle and syringe programs, treatment).

HIV and hepatitis C work together allows us • Doing to provide comprehensive care to the people we work

with (e.g. through a “one stop shop”, multidisciplinary, or case management approach).

a strong harm-reduction focus means we need • Having to address both HIV and hepatitis C

populations we work with who are living with and • The immediately at risk of HIV and hepatitis C need all the support we can provide—without barriers to access.

• “I don’t know how to work in a way that’s not integrated.”

Thus, this Good Practices Guide highlights not only why it makes sense to do HIV and hepatitis C work together, but the practical ways in which organizations are identifying and responding to the needs of the populations they work with, and in doing so, building strong organizations that are good to work for and are relevant and supportive to the people they serve.

Throughout this Guide, we refer interchangeably to the “HIV and hepatitis C sector” and the “HIV and hepatitis C sectors.” We do this, as the quotes from stakeholders indicate, because the lived reality of HIV and hepatitis C work in Canada is that both are very much intertwined.

Services issued a guidance document on how to integrate viral hepatitis into Ryan White (HIV) Clinics in 2011, and the National Alliance of State and Territorial AIDS Directors (NASTAD) published a guide on integrating viral hepatitis into existing HIV/AIDS programs, with a focus on clinics, in 2006. The vast majority of published literature on integrated approaches to HIV and hepatitis C focus on addressing both disease areas in clinical settings; this means this Good Practices Guide really is the first document addressing integration in CBOs and CHCs—the key settings where discussions about integration are currently occurring in Canada. (NB: Links to these documents are provided in the Resources section below).

While the current integration policy context is politically risky, as it seeks efficiencies to which on could assume may lead to the further withdrawal of investment from public services, the vast majority of us in the HIV and hepatitis C sector want to do more. We all recognize that institutional responses have struggled with resources and have had difficulties addressing the unique realities of people living with and at immediate risk of HIV and hepatitis C, and even more so, people who use drugs. It is important to assert the need for sufficient resources, especially in areas that have been habitually resource-challenged, such as national anti-stigma campaigns, universal treatment, and comprehensive case management for high-needs individuals—especially people with dual diagnoses, and programs run by and for indigenous peoples that can respond to local realities.

While this is true, it is important to point out that there is very little published literature on existing best practices in undertaking an integrated approach to HIV in hepatitis C. The only Canadian example is the Vancouver Island Health Authority’s 2006-2009 strategic planning document on integrated approaches to HIV and hepatitis C, which admirably set extremely ambitious goals of preventing a targeted number of HIV and hepatitis C cases, as well as taking up opportunities to do HIV and hepatitis C work together where it made sense, setting the stage to seek or leverage additional investment. In the United States, the Department of Health and Human

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How we developed No More Silos

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o More Silos was advised by a national stakeholder committee, comprised of people living with HIV and hepatitis C, service providers, NGO workers, clinicians and policymakers who had successful experiences working in environments that integrated HIV and hepatitis C. The national stakeholder committee reviewed existing published literature on HIV and hepatitis C to frame a set of survey and interview questions to be delivered to key informants working in organizations across Canada.

Data collection took the form of a national stakeholder survey and a smaller subset of key informant interviews.

The national stakeholder survey was delivered to people working in HIV and hepatitis C CBOs, as well as clinics and CHCs with substantial HIV and hepatitis C mandates, over a period of three weeks in August and September 2013. A total of 95 completed surveys were returned. Of those, 63 indicated they worked in organizations that undertook an integrated approach to HIV and hepatitis C, 21 indicated they worked in HIV only, and 12 indicated they worked in hepatitis C only.

A majority (n=52) indicated they worked in a CBO (e.g.

ASO), while fewer indicated they worked in a CHC (n=13), public health unit (n=11), or a non-governmental organization (n=10).

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Upon analyzing survey results, the national stakeholder survey identified seven key informants across Canada to interview to provide a textured, more procedural description of what integrating HIV and hepatitis C services looked like in their organization. Of these, three worked in a CBO, two in a public health setting, one for an NGO and one for government. Key themes and practices were drawn from a review of the published literature, national stakeholder committee discussions, the national stakeholder survey, and key informant interviews, the proceeds of which comprise No More Silos.

But HIV and hepatitis C aren’t the same!

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hile the vast majority of our national stakeholder survey respondents provided good examples of why undertaking an integrated approach to HIV and hepatitis C is a great idea, they also said an integrated approach can lead to problems:

• Because HIV isn’t a curable condition, managing HIV and hepatitis C require different approaches

• Many people living with hepatitis C, who either haven’t used drugs or haven’t used drugs in a long time, have difficulty accessing services in an HIV organization with a strong harm-reduction program.

• Many people living with hepatitis C resist being associated with HIV and don’t want to access services at an HIV organization.

• Amongst people who use drugs, hepatitis C is something people are more willing to talk about, but there’s a tremendous amount of stigma when talking about HIV.

• There’s more funding to provide services (e.g. food banks, practical support) for people living with HIV than hepatitis C, so not all service users have equal access to organizational resources.

In addition to these issues, a great deal of tension between the HIV and hepatitis C communities has flared up in the wake of the PHAC’s decision to merge the two funding streams. A few respondents to our survey were concerned that this integration is just an opportunity for HIV organizations—without a longstanding commitment to hepatitis C—to take away the hepatitis C funds. Conversely, a few HIV organizations responding to our survey were concerned that they may be at risk of being defunded because they were unable or unwilling to take on hepatitis C in their mandate, because their membership numbers were quite small, or because people who use drugs weren’t well represented in their memberships.

This Good Practices Guide is not neutral in answering the question ’is an integrated approach to HIV and hepatitis C is the right thing to do?’: in fact this guide posits that it is an approach worth considering if and/or when it makes sense for your organization and the people you work with. While prevention-related health promotion messaging (especially for people who use drugs) should reasonably always include information about HIV and hepatitis C, and while, especially in smaller communities, co-locating infectious disease and hepatology specialists may make a lot of sense, there can be no one-size-fitsall approach for providing services to people living with HIV and/or hepatitis C.

It is important to point out that if stigma goes unchallenged, we risk perpetrating the very stigma we caution against. However, not providing a variety of avenues for different people to access services, may mean that some people will not get access to health care. This is something we don’t want either, considering treatment advances mean more and more people will be able to cure their hepatitis C, and considering still, 30 years into the HIV epidemic in a country that has a public (e.g. accessible to all Canadians) health care system, too few people have access to antiretroviral therapy. It is important, however, that in any care setting, stigma about HIV, hepatitis C, substance use and queer people is challenged so that we can remedy divisions in the communities of people living with and affected by either condition.

The needs of all people living with HIV and hepatitis C need to be taken into account when planning, funding, implementing, and evaluating service offerings. These services will often be different for the widely diverse members of the HIV and hepatitis C communities.

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Resources: KPMG and the Mowat Centre’s The integration imperative: reshaping the delivery of health and human services: http:// mowatcentre.ca/wp-content/uploads/publications/73_the_ integration_imperative.pdf For more on the neoliberal economic policy and the erosion of public services in Canada in the 1980s and 1990s, see Terry McBride and John Shields, Dismantling a Nation: The Transition to Corporate Rule in Canada (Fernwood Publishing, 1997) See also Bernardo Useche and Amalia Cabezas, “The vicious cycle of AIDS, poverty and neoliberalism” in Revista Envio (August 2005)

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We do what makes sense:

Responding to community need ISSUES

Whichever role you play—whether you’re an outreach worker, infectious disease specialist or hepatologist, peer support worker, program manager, researcher, dedicated volunteer—if you’re working in HIV and/or hepatitis C, you’re responding to community need. Our sector runs on the energy of people working passionately to address challenges faced by people living with and at immediate risk of HIV and hepatitis C. Most of the organizations addressing both HIV and hepatitis C we talked to while developing this Good Practices Guide also started doing so to respond to existing community identified needs. For most, doing HIV and hepatitis C work together stemmed from an organizational focus on people who use drugs. Of course, as the HIV movement and ASOs evolved, the need to address the lived experience of HIV amongst people who contracted the disease through shared injection equipment became clear, as did the need to provide needle and syringe exchange to prevent new cases. Many HIV organizations with needle and syringe programs became crucial points of access for people who use drugs.

While needle and syringe programs are credited with keeping rates of HIV infection very low amongst people who use drugs (prevalence rates are, on average, 4% or less in most places across Canada), they are also extremely important in preventing the onward transmission of hepatitis C. Unlike HIV, hepatitis C rates are extremely high amongst people who use drugs; PHAC’s most recent data indicates an average prevalence of 69%.

Naturally, recognizing this high prevalence has led many HIV organizations who provide services to people who use drugs to incorporate hepatitis C health promotion information into their service offerings. In the words of one respondent to the national stakeholder survey we conducted in support of this project:

“

We have the province’s busiest needle exchange program… [incorporating hepatitis C] just made sense.”

Importantly, most organizations that provide harmreduction services to people who use drugs don’t focus just on HIV and hepatitis C. Many organizations that respond to the needs of people who use drugs are just as concerned—if not more so—with other, often more pressing realities, such as: how can we get get a service user into secure housing? How can we help ensure they person will have enough food to eat? If they could probably benefit from medical assistance and/or mental health supports—what can we do to help? After all, HIV and hepatitis C do not exist in a vacuum, and because of this, many organizations that work with people who use drugs are concerned with broad determinants of health, in addition to prevention, care, support and treatment.

Hence, organizations—whether HIV, hepatitis C or focused on another health issue altogether—are wellpositioned to directly provide or make strong referrals to health services that improve the realities of people who use drugs. In the Practices section below, we share good practices organizations across the country have done to ensure their integration approach has responded to community needs.

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PRACTICES Identifying organizational strengths

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hat is your organization particularly good at? Is your needle and syringe program widely used by people who use drugs in your community, who enjoy trusting relationships with staff members and volunteers? Do your case managers skillfully navigate the social safety net in ways that ensure service users gain access to income and housing support with as few barriers as possible? Do you enjoy strong referral relationships between your organization and infectious disease and/or hepatology clinics (or vice versa) to ensure superior continuity of care? Do your support groups make participants feel less isolated, supporting their sense of self-determination?

We have a lot of strengths in our sector, and it is good for organizations to take time to reflect on what strengths they bring to the table—especially when considering changing or expanding your organization’s mandate, programs and/or services. Indeed, new or expanded program offerings should always be built on strengths.

A practical first step in expanding existing program offerings to address HIV or hepatitis C (or another relevant intersecting health issue) is to take an inventory of your program offerings that takes into account everything your organization does and/or offers.

Try to be as complete as possible, and think across all organizational functions—listing the needle and syringe program might be easy, but don’t forget about things like accounting and office management procedures that make grant reporting more efficient.

Once you’ve identified everything you do, reflect on the list and ask: which of these programs might be best to expand to HIV or hepatitis C (or another relevant intersecting health issue)? Not all of your programs will be suitable, and some might be provided by other community organizations. Also, ensure you solicit a variety of opinions from across your organization (including management, front-line staff, volunteers, members, patients, Board members, even community partners), as some might have differing opinions on how effective and/or transferable a program may be.

However, if you do all agree that one of your program offerings would be a good place to integrate both HIV and hepatitis C, reflect on the following good practices:

What’s happening out in communities? Who’s coming through your door?

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s important as it is to review your organization’s program and service offerings, it is even more important to pay attention to what’s happening in the communities you work with. Most organizations we talked with when preparing this Good Practices Guide said their decision to undertake a more integrated approach to HIV and hepatitis C came from staff building up trust with and learning from service users about their health situation, and from service users coming through the door with health needs around their substance use—including hepatitis C. Just as many organizations adjust their messaging about overdose prevention or sharing information about bad drug batches that people are dealing based on what they hear from people coming through the door or while on outreach, it is important to apply a similar approach to understanding community needs. An outreach worker who is particularly strong at connecting with people in the community who use drugs will be one of your key sources on gaps people are experiencing in accessing services, as well as settings and times people may be most interested in engaging in discussions about substance health. Peer workers, who are crucial bridges between people with lived experience and organizational service offerings, really are the experts—after all, they

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can let you know not just about gaps people face, but whether what your organizational offerings are working and/or reaching people.

To put it another way, a community development approach is fundamental for organizations, both in terms of “push” (e.g. to ensure your services get to the people who need them most), and “pull” (e.g. to ensure your messages are relevant and your organization is credible to people with lived experience). While this approach is always important and a cornerstone of the strongest HIV and hepatitis C organizations, it is even more important when an organization is considering and/or embarking on a mandate change.

Formal and informal needs assessments

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ull disclosure: most organizations we talked to didn’t conduct a needs assessment before undertaking an integrated approach to HIV and hepatitis C. The most common approach was much more informal: organizations saw a need, identified where they could also address HIV or hepatitis C in their program offerings, and moved forward.

However, now that almost everywhere in Canada has established a response to HIV and hepatitis C (even if gaps remain), conducting a formal needs assessment before undertaking an integrated approach in programming is probably a very good idea, and very necessary to avoid duplication and mission creep. Of the organizations we spoke to, one regional health authority noted a needs assessment was a practical first step in ensuring all organizational partners with an interest in hepatitis C would be brought to the table.

When designing a needs assessment, you may wish to consider the following questions:

• Who is providing HIV and hepatitis C-related services in my community right now? are the current gaps in services for people living with and/or at immediate risk of acquiring HIV and hepatitis • What C in my community? (e.g. Lack of health promotion and education; inaccessible harm-reduction services, problems accessing employment re-training, etc.)

there any organizations working in these “gap” areas that could become more competent in HIV and hepatitis • Are C through a partnership with your organization. Could they, therefore, meet the needs of the people you’re working with without duplicating services? (e.g. Partnering with a CHC to provide an on-site HIV support group, working with an employment services agency to develop resources helping people about to undergo hepatitis C treatment negotiate disability services, and/or return-to-work plans, etc.)

kind of coalition or network between organizations might make sense in our community to support shared • What commitments to HIV and hepatitis C (e.g. A quarterly meeting between a CBO, public health and municipal government officials; a group of organizations sharing opportunities to partner on program and fund development.)

Check your “epi”

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f your organization does a good job at connecting with people living with or at immediate risk of acquiring HIV and/or hepatitis C, nothing in national, provincial/territorial or local epidemiology studies should surprise you.

What’s been studied and published will have already walked through your door.

It is always a good idea to look epidemiological updates, especially when updating and/or changing your programming. Your epi may alert you to trends you haven’t seen yet, or seen confirmed yet (e.g. changes in hepatitis C transmission rates associated with people smoking instead of injecting drugs). Confirmation through formal epidemiological studies can provide strong evidence in funding applications for new programs, or in working with public health or public policy-makers to introduce a new intervention coordinated across multiple sites.

data that can inform your own programs as well as those of similar organizations. Many organizations, like the Canadian Aboriginal AIDS Network (CAAN), the Ontario HIV Treatment Network (OHTN) and the Centre for REACH in HIV/AIDS have produced resources to guide community organizations as they engage with researchers, and links are available in the Resources section below.

However, epidemiological monitoring is limited in Canada, and most often published data lags behind what you’re seeing in your organization. While it can be timeconsuming to engage researchers in partnerships with your organization to evaluate trends you’re seeing, you may be able to get ahead of the curve and help produce

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Policy leadership from provincial and/or local organizations, coalitions and networks

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hile more established in HIV, “centralized” or coordinating “hubs” located in provincial, territorial or municipal government structures are rare. However, where they exist (for example, coordinated through a hepatitis C secretariat within a provincial or territorial Ministry of Health), they can really support organizations to ensure their programs do not duplicate existing services, build on strengths happening in similar programs in different regions, as well as with brass tacks items like program evaluation and ensuring access to innovative staff training modules.

When developing the Guide, we spoke to one policy analyst in a health ministry who oversees a new and well-evaluated multidisciplinary health approach to address hepatitis C in the province. In order for the program to work well, the health ministry needed to host agencies across the province were equipped to work with populations with increased hepatitis C prevalence (notably people who use drugs) and connect these folks with supportive health services. Establishing a set of eligibility criteria (e.g. a treating physician needed to be connected to a potential team), the health ministry was able to coordinate and conduct needs assessments and community consultations, and from there, work to build capacity in the team/network with the most potential.

While this isn’t the way much of the HIV and hepatitis C responses were built, where organizations and support services were built by and for community, this approach mentioned above is also worthwhile. In this case, centralizing planning and needs assessment functions allowed teams to be implemented in ways that connect well with community members and avoid service duplication. Planning and networking our programs is particularly important as we move forward in the HIV and hepatitis C response; after all, when programs are disconnected, it is people living with HIV and hepatitis C who miss out.

QUESTIONS If you are starting to, or further undertaking an integrated approach to HIV and hepatitis C in your organization or your program, here are some key questions to ask yourself:

• As an organization, what are we good at?

• What do we want to be good at?

• What’s coming through our door that we would like to respond to better?

• How do we know what we know about the needs of the people we work with?

• What approaches can we support within our organizational environment? there external (regional, provincial/territorial or federal) networks we can tap into to bolster our program • Are responses (including policy and research organizations)?

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Resources: US Department of Health and Human Services, Integrating Hepatitis C Treatment in Ryan White Clinics: Models and Steps, available: http://www.sfaetc.ucsf.edu/docs/ hepatitiscmodelstools.pdf NASTAD, Viral Hepatitis and HIV/AIDS Integration: A Resource Guide for HIV/AIDS Programs, available: http://www.nastad.org/Docs/highlight/200638_VHEP%20 Resource%20Guide.pdf Vancouver Island Health Authority, Closing the Gap: Integrated HIV/AIDS and hepatitis C Strategic Directions for the Vancouver Island Health Authority, available: http://www.viha.ca/NR /rdonlyres/90755627-1758-4A5CA446-16D26CB680C7/0/ClosingtheGapJuly252006.pdf

In Summary:

Carol Strike et al., Best Practice Recommendations for Canadian Harm-reduction Programs that provide service to people who use drugs and are at risk for HIV, HCV and other harms, available: http://www.cate.g.ca/sites/default/files/ bestpractice-harmreduction.pdf Resources on engaging with researchers are available from the OHTN at www.ohtn.on.ca and the CAAN at www.caan.ca

“We do what makes sense”: Responding to Community Need identified practices organizations

have undertaken to identify unmet needs in the communities they serve through formal and informal means. Some practices organizations used to identify unmet needs were: on current organizational strengths to • Reflecting identify what existing programs and services could be expanded to meet the needs of people living or at immediate risk of HIV or hepatitis C

• Conducting formal and informal needs assessments to published epidemiological data or • Referring engaging researchers at your local academic centre to conduct research on established or emerging issues facing the people you work with

people working in a Ministry of Health or public • For health setting, implementing new programs or consolidating existing ones in various areas of the HIV or hepatitis C response to increase central leadership, including strategic planning, program guidance and capacity support (e.g. central coordination of multidisciplinary care teams)

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Toward integration: Organizational and fund development ISSUES Almost everyone involved in developing this Good Practices Guide had a story to tell about how painful the process was to undertake an integrated approach to HIV and hepatitis C. This was particularly true for people working in ASOs. Many of these organizations were started by and for gay men, responding to the unique stigma and barriers gay men faced early in the HIV/AIDS crisis. In the late 1990s and early 2000s, even if some organizational leaders (including management and Board of Directors members) saw the crucial needs for organizations to more fully address HIV and related health issues (including poverty mitigation work and gender justice) for people who use drugs and women living with HIV, to many, it felt like their needs were being erased.

However difficult these conversations and organizational changes were, undertaking an integrated approach to HIV and hepatitis C has already become the norm for many organizations today, despite the extent to which organizational missions, visions and mandates actually reflect a truly integrated approach (see below).

A similar fear, often termed “the end of HIV/AIDS exceptionalism,” underpins resistance to undertaking an integrated approach to HIV and hepatitis C today (see the chapter “But HIV and hepatitis C aren’t the same!”)— which, in turn, reflects a broader anxiety about the future of our sector.

Many people we surveyed or interviewed spoke about tensions that occurred when their organizations embarked on an integrated approach to HIV and hepatitis C. Many of these tensions were related to gay men in staff or Board leadership roles worrying that gay men’s health issues would take a backseat to health issues for people who use drugs—and, in some cases, also women, indigenous peoples, and newcomers to Canada.

As mentioned above, many organizations that weathered these challenges did so by recognizing and committing to an intersectional approach—identifying how issues like stigma, housing insecurity, health system barriers and others disadvantage gay men, people who use

drugs, indigenous peoples newcomers, and women alike (although often with differentially oppressive impacts), and that we all must intervene against these structures (and/or provide programs and services that ameliorate their negative impacts) to improve health for all.

Have we gotten to where we want to be? That’s for each organization across the country to assess, although with the current state of the war on people who use drugs, on harm-reduction, extremist federal policy targeting newcomers and refugees, receding support for indigenous peoples, and the current state of HIV criminalization, we have a long way to go in Canada—and figuring out how and where our organizations fit in this struggle is a challenging and ongoing task.

The best strategy to weather these pressures and ensure our organizations can continue to do the work we do best is to ensure our organizations’ health, strength and capacity. In addition to ensuring our services are relevant to our populations (see “We do what makes sense” above), and that our programs reflect good practices that have been verified by demonstrated successes and evaluation across the sector (see “Promising programs” below), we also need to ensure our organizations are strong and viable—that we have exceptional human

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resource capabilities, that our governance models are professional, representative of our memberships and provide outstanding leadership to our organizations, and that we secure our funding and maximize our resource development opportunities.

This means our organizations need to function as sites of opinion leadership in our communities—about HIV and hepatitis C, but also about anti-racism, decolonization,

sexual health and substance use. On top of that, this kind of organizational development and leadership can be challenging to deliver on an ongoing basis—especially in an environment of constant resource constraints— but this leadership, in and of itself, is fundamental to cultivate, especially from the perspective of responsible succession planning for our sector.

PRACTICES Getting on the same page: Buy-in and competing visions

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hile we were developing this Good Practices Guide, a theme that kept recurring in steering committee discussions and interviews was the way in which our sector is driven by the efforts of people working passionately. Whether it is the lived experience of HIV or hepatitis C, commitment to increasing availability and awareness of harmreduction, mitigating poverty, ending homophobia and transphobia, or driving other forms social change, the vast majority of people in our sector bring personal dedication, commitment and belief to their work.

While this passion is an incredibly powerful force driving the HIV and hepatitis C sectors, it also means differing visions are often at home in our organizations. This diversity is key to the strengths of our organizations, but also means strong leadership and open communication needs to take place when we refine or change our mandates or our work.

For organizations considering undertaking an integrated approach to HIV and hepatitis C, it is important to keep in mind all of the practices identified in the “We do what makes sense” chapter. Engage all stakeholders in your organization (e.g. staff, members, volunteers, patients, etc.) to assess what they see as unmet needs, and what their vision(s) for your organization are. If, for example, you provide services to people who use drugs and through your needs assessment you identify they have substantial unmet needs that your organization is capable of expanding programs or resource provisions to meet, it is important to share this information and evidence in an open and transparent way with your stakeholders— especially your Board of Directors and/or members, even more so if their vision of your organization diverges from the realities you’re seeing.

One message that came through our national stakeholder survey is the importance of organizations, funders and other policy-makers sending consistent messages when engaging with all stakeholders. This is especially true when messaging about potential organizational changes.

Hence, when organizational leadership decides to make

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a change or embark in a new direction, it is important that this position is committed to and communicated— even if ongoing consultation may occur to finesse the direction. As such, all people in an organization providing leadership during a period of change (e.g. Board of Directors members, Executive Director, manager or team lead) need to be open and honest about the process, provide proactive opportunities for questions to be addressed, give clear and concise answers (or point out that a given answer may not yet exist but will as a process moves forward), and refer to internal documents and/or external examples (e.g. an organization that has already made the change you’re undertaking) for stakeholders (e.g. staff, volunteers, members) who may wish to gain more clarity.

Champions leading the way

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veryone we surveyed or interviewed when preparing this Good Practices Guide who said their process of undertaking an integrated approach to HIV and hepatitis C was successful identified the importance of a champion who led the way, expressed a concise vision and gained the buy-in of everyone in the organization. In all cases we surveyed, more than one individual from various aspects of the organization championed an integrated approach, including Board of Directors members, members living with HIV or hepatitis C, organizational partners (e.g. public health officials, senior managers of partner organizations).

A variety of internal and external stakeholders in your organization need to see the reason you’re championing this change. If you feel your organization needs to take an integrated approach to HIV and hepatitis C because you’re a harm-reduction worker seeing both HIV and hepatitis C-related needs in your organization, or because you’re a person living with HIV and/or hepatitis C who requires your needs to be met in a way that’s not happening at your organization, or because you’re a clinician who sees both HIV and hepatitis C in the population you’re treating, it is good to talk openly about these gaps and areas of need so you can line up with allies in the organization to build momentum for an integrated approach.

The importance of champions in the process of undertaking an integrated approach builds on the need for clear communication across all organizational stakeholders when a transition is taking place. In fact, it is the champions themselves who can be conduits for communication, questions, and concerns. Having clear go-to people to listen to and respond to competing visions or additional needs will also ensure the process by which your organization undertakes an integrated approach reflects all needs and experiences at your organization.

Brass tacks: Letters patent, strategic plan, polices and procedures, resources

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hile the previous two sections have described ideal practices to help you navigate transitioning to an integrated approach to HIV and hepatitis C, it is important to point out that most organizations we surveyed haven’t fully integrated HIV and hepatitis C in their legal structures—especially if organizations were ASOs first.

Almost all organizations that responded to our national stakeholder survey indicated they provide some level of programming in both HIV and hepatitis C, and the vast majority indicated they have funded projects in both areas, and that both HIV and hepatitis C-related needs appear in their strategic plans. However, very few organizations indicated both HIV and hepatitis C appear in their organizational mission statement or letters patent.

Focusing on including both HIV and hepatitis C in an organization’s foundational documents may seem like a diversion, as organizations in our sector are confronted on a daily basis of more pressing needs, such as client advocacy or gaining access to health services for people living with HIV and hepatitis C. Additionally, focusing on HIV and hepatitis C in particular may seem, as reflected throughout the “We do what we makes sense” and “Promising programs” chapters in this Guide, to not address the broad social and structural determinants of health work going on more and more in our organizations.

The question of whether your organization is HIV or hepatitis C-focused, or social and structural determinants of health-focused, is one for you to decide.

However, if your organization is member-driven, and your membership is made up of people living with HIV or hepatitis C, and your organization currently (or is increasingly) doing work in both HIV and hepatitis C, it is crucial you update your membership guidelines and your letters patent to reflect these realities. This is especially important considering the lack of representation felt by many people living with hepatitis C within organizations (see the chapter “But HIV and hepatitis C aren’t the same!”).

Many organizations have used the requirement for nonprofits to update their bylaws in accordance with updates to the Canada Not-for-Profit Corporations Act (updates that are due October 17, 2014) as opportunities to reflect both HIV and hepatitis C in their bylaws. Even if your organization has already updated its bylaws, it is good practice to take your newfound knowledge on the Act and make a change at your next Annual General Meeting to include both HIV and hepatitis C. As above, make sure you include changing the letters patent and bylaws of your organization as one of the things you’re engaging your stakeholders on in any consultative process gaining buy-in.

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Fund and resource development: Tips

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onsidering the HIV and hepatitis C responses have always been chronically under-resourced, many leaders in our sector are concerned that integration really just means doing more with less. This, quite unfortunately, is true: with all the talk we’re currently hearing of integration, we are not hearing about increases in core or project funding being made available to organizations that are finding efficiencies and opportunities for innovation.

The practices listed below will be nothing new for practiced executive directors or program managers. However, they do reflect some of the fund and resource development strategies people who responded to our national stakeholder survey are using around the country, and they may spark ideas about how to organize your existing funds and to develop new ones.

Getting to Core Funding

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ost organizations across Canada are core funded, at least to a certain extent, by the public health arm of one (or more) levels of government. Important to note, what’s used as “core” funding for many organizations has actually transitioned over the past many years into project, or time-limited funding. While these funds are the engines keeping organizations going, “project” funds often limit what they can be used for: for example, you can pay the staff devoted the projects, but not their benefits, nor the capital equipment (like IT and leasehold expenses) needed to house your program.

Many municipal public health programs across the country pay for harm-reduction services (including the true costs of needles, syringes and other injection equipment), and some municipal programs fund health promotion interventions/programs. Where provincial HIV (or, in rare cases, hepatitis C) strategies exist, additional positions or programs, and attendant budgetary needs, are funded—although this ranges dramatically across the country.

Federal dollars, provided through the PHAC, are used by many organizations as core funds, despite the fact they are awarded in anywhere from one to five-year terms (depending on the given competition). In “Piloting new interventions” below, we’ll reflect the experience of many organizations across the country that have started using their federal dollars to pilot new programming, instead of funding ongoing interventions.

Importantly, for organizational sustainability, it is important to core fund as much of your organization as possible, and to attach your core operational activities to ongoing, predictable funding. For the purposes of this Guide, let’s define “ongoing, predictable funding” as agreements lasting five years or longer.

Think back to your answers to the questions in the “We do what makes sense” chapter: What is your organization really good at? What do you want to be good at? Organizations across the country that are in strong financial positions have ensured the programs and services that fall under the first question are core funded, and that the programs

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and services falling under the second question are project funded. Obviously, this is easier said than done, and most organizations’ balance sheets are more porous than that. But, such a division is what organizations should strive for.

Increasingly, some organizations have funded activities from outside health budgets. Some organizations with worker training or re-insertion programs for people living with HIV or hepatitis C are funded by Human Resources and Skills Development Canada (for example, the AIDS Committee of Toronto’s Employment ACTion program), while organizations focusing on housing security for people living with HIV or hepatitis C draw on funds from municipal or provincial housing strategies (for example, CAPAHC in Montreal’s transitional housing project for precariously housed people undertaking hepatitis C treatment).

Thinking outside the health box is not just a strategic short-term move, but an important practice for the long-term sustainability of our sector, as people living with HIV and hepatitis C have needs that fall outside traditional health and public health structures, and these needs must be reflected in future planning and funding envelopes.

Piloting New Interventions: Project Funding

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s mentioned above, core funding for CBOs is becoming increasingly rare, with even formerly stable pots of money transitioning to short- and medium-term project-based contributions. In the face of increasing funding instability, more and more organizations are funding programming that’s relatively core—e.g. health promotion with key populations, social support and health system navigation for people living with HIV or hepatitis C—through project funds, including those provided by PHAC. While everyone wants their funding arrangements to be as core and predictable as possible, relying on project funding to conduct core activities has become an unfortunate norm, as using project funding to fund core activities stifles programming innovation that responds to new and emerging community needs—especially if project funds are rolled over in endless contribution amendments that don’t allow revision or restructuring of project activities.

While this is not a possibility for many organizations, a number of organizations we engaged when developing this Guide indicated they have come to use project funding, including that provided by PHAC, strictly for pilots. We engaged one program in particular, addressing both HIV and hepatitis C but located as an entity within a CHC, that has created a programlevel “logic model,” mapping out all the interventions the program could provide in the benefit of their service users if an ideal amount of funding was available. This allows the organization to identify opportunities from available funding pockets, research projects, etc. to satisfy organizational goals.

The benefit of dedicating project funding to pilots is that a well-evaluated pilot can occasion opportunities to approach municipal, provincial/territorial or, were conditions to change, the federal government for ongoing sponsorship—including applying the intervention you’ve developed and tested to other relevant regions. While this uptake by governments is rare, the benefit remains that using project funding for pilots means your organization won’t be saddled with a project that’s outlived its usefulness for service users and your organization writ large—a stagnancy that can be quite threatening to many organizations.

practices and referrals for avenues for core funding are crucial for organizations with less experience in program development.

Another source of pilot funds can be through the pharmaceutical industry. While many organizations rely on unrestricted “big pharma” dollars to defray operational or capital costs that aren’t covered by government contributions, industry, too, is moving to more of project-funding model. As big pharma funds allow for greater freedom, and as many pharmaceutical companies are seeking to serve as a more meaningful, collaborative partner to organizations (i.e. providing substantial support for program design, implementation, evaluation), these funds can also be a useful for testing programs that may be a little more out of the box.

To do this, identify pharmaceutical companies operating in the Canadian HIV or hepatitis C spaces and reach out to their community relations department early and on an ongoing basis. Present your organization’s strengths, priorities, and areas you wish to grow in. Ask pharmaceutical representatives where your priorities and their target areas for interventions align. Additionally, pharmaceutical companies may be able to work with you beyond a simple one-time contribution if, for example, you’re developing a programmatic intervention, ask if they can work with you to provide research funds and/ or support to develop, implement and evaluate it in the form of a clinical trial.

It is also important to communicate to PHAC that organizations could benefit from guidelines on how to approach funders and other relevant partners to transition project-funded pilots into ongoing, core interventions.

A lot of this work is currently conducted informally by program managers and other organizational leaders who have experience nurturing partnerships. Good

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Thinking Outside the Box

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ust as organizations have increasingly looked to non-health funding sources in government to provide core interventions that improve the lives of service users, it is important to look to non-traditional partners to either core- or project-fund your organization. While this is not an exhaustive list, these are just a few funding sources organizations across the country have looked to in recent years:

industry partners, including banks, mining, and oil and gas. While these sources may require you, • Non-traditional your staff and your governance body to discuss ethical implications of taking on these funds, these industries have substantial corporate social responsibility programs that, like many pharmaceutical companies, offer funds on an unrestricted educational and/or project basis.

from other sources of government revenue, such as the lottery or casinos. Again, there are some substantial • Funds ethical considerations to consider before taking these funds, but in some provinces (especially Alberta), these funding sources can provide some (if not the only) additional revenue for health and social services.

collectively with other organizations to increase revenue. There are many examples of collective fundraising • Join efforts through foundations (like the Alberta Community Council on HIV or the Farhi Foundation in Montreal)

that allow for a strengths-in-numbers approach, in turn granting fundraised dollars to support organizations doing crucial work that otherwise couldn’t be funded. A similar example of this is the Taste for Life or AIDS Walk for Life events, a good portion of which are organized centrally (by the Canadian AIDS Society, AIDS Committee of Toronto or other larger NGOs), allowing smaller organizations the opportunity to participate without having to re-invent the wheel.

Many organizations have been able to expand their funding base by contracting a fund developer who, in addition to raising monies for an organization, does fundraising for her/his own salary. If this isn’t something your organization has the capacity to support as yet, or a formal or informal needs assessment you have conducted has demonstrated you wouldn’t be able to fundraise sufficient dollars to cover expenses associated with a fund developer, you may wish to engage with a college in your region to take on a placement student who may be able to organize one or two smaller fundraising events for you in a given year.

Mergers and organizational changes

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lthough less common, in recent years, some organizations have decided to navigate the challenging funding environment we face by merging with other agencies to make larger CBOs, or have abandoned operating in a traditional non-profit framework altogether, either merging with or starting new operations in the CHC model.

We engaged a few organizations across the country who have changed the way they operate to expand services and enjoy more financial stability. One example is an ASO that merged operations with an HIV hospice/ housing centre in their area. Merging allowed for less overhead expenses and to consolidate administration staff/capacity, for example.

We spoke to a number of programs that had merged with a CHC in their area, or had started a clinic side of their operation. With this comes much increased financial sustainability. Operating a CHC, depending on the funding model, allows an organization to provide more robust multidisciplinary care in addition to case

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management and practical support offerings. In some cases, it can also allow for easier access/lower thresholds for methadone treatment if prescribed on-site. The CHC model also, for the most part, allows employers to offer wages that are competitive with other health care organizations.

There appears to be an increasing move in the direction of providing services traditionally housed in ASOs through clinical settings. This is most obvious in Saskatchewan, where the current HIV response is very much led by nurses. In addition, the increasing importance of nurses in HIV and hepatitis C care can be seen in various places throughout the country. As a result, two key questions for

all of us at this point in the HIV and hepatitis C response are: Where, and to what extent, might we improve HIV and hepatitis C services by further integrating within more traditional health care environments, such as

hospital clinics or CHCs? And what might we be at risk of losing by shifting many core HIV and hepatitis C services (like health promotion and case management) away from the CBO?

QUESTIONS

• What are various visions of our organization’s mission, vision and values are at home in our four walls? some needs faced by people accessing services at our organization more pressing or unmet than others? What • Are can we do to prioritize/better address these needs? needs or desires for our organization need to be de-emphasized in order to meet our priorities, what will we • Ifdosome to ensure everyone still feels welcomed and respected in our organization?

• Who’s providing leadership in our organization? Who’s positioned to articulate and gain support for our renewed vision? do we, as an organization, currently ensure all stakeholders—especially people living with HIV and hepatitis • How C—are meaningfully engaged and represented in organizational decision-making?

do we balance core, project, industry and other fundraised dollars in our organization to ensure we can • How predictably offer ongoing programs year-after-year, while also enhancing our ability to develop and implement innovative interventions in the benefit of the people we provide services to?

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Resources: While the services of the Ontario Organizational Development Program (OODP) are only available to ASOs funded by the Ontario Ministry of Health and LongTerm Care, they do have some helpful resources on their website applicable to organizations across the country: http://oodp.ca/online-resources For organizations seeking to integrate HIV and/or hepatitis C into their mandate while they come into compliance with the Canada Not-for-Profit Organizations Act, Industry Canada provides a helpful guide here: http://www.ic.gc.ca/eic/site/cd-dgc.nsf/eng/h_cs04954.html

In Summary: Toward Integration: Organizational and Fund Development identified conditions that led to

organizations successfully integrating HIV or hepatitis C into their previous mandate, including fund and resource development tips. Some practices organizations used to successfully integrate approaches to HIV and hepatitis C were: buy-in across an organization through • Generating strong leadership, extensive consultation and

meaningful engagement of all constituencies (e.g. staff, members, partners), and clear expression of new or emerging visions for the organization

people with lived experience, • Champions—either Board of Directors members, key organizational

partners, and/or senior management—gaining support and acceptance for an integrated approach to HIV and hepatitis C

the courage to pursue an integrated approach • Having even in settings where both HIV and hepatitis C

are not reflected in an organization’s letters patent, but ensuring integration is addressed and accepted at a members’ meeting to ensure all stakeholders, including people living with HIV and hepatitis C, have a say in how an organization operates

strategies in fund and resource • Innovative development, including identifying opportunities to transition pilots into core funded projects, reserving project funding for pilot initiatives, as well as locating multiple funding sources within governments as well as from the private sector

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Promising programs:

Moving from an HIV and hepatitis C-centred approach to addressing broader social and structural determinants of health ISSUES The organizations that responded to the national stakeholder survey we conducted as we were developing this Good Practices Guide identified three overarching programrelated themes regarding undertaking an integrated approach to HIV and hepatitis C: health promotion messaging about • Incorporating both HIV and hepatitis C strengthens program offerings, especially when working with people who use drugs, and especially when addressing HIV/ hepatitis C co-infection issues.

recognizing HIV and hepatitis C as core • While organizational functions, most programs and/or

interventions operate from a determinants of health approach, seeking to improve access to health services, income and food security programs, housing and shelter, etc.

improving health and wellness-related • While outcomes by undertaking an integrated approach to

HIV and hepatitis C, doing so often means providing more programs and services using the same amount of or only slightly more funding, and that innovative fund and program development strategies can only go so far.

Of particular note is this second point—namely, operating more and more from a “determinants of health”-based approach. Many organizations across the country certainly understand their key functions as providing programs and services about HIV and hepatitis C to people living with or at immediate risk of acquiring one or both conditions. However, as anyone who’s worked in an ASO, CHC or clinic know, HIV

and hepatitis C are most often consequences of limited access to housing, health care, mental health services, adequate harm-reduction and health promotion related to substance involvement and sexuality, income and food security—amongst many other determinants.

Lack of access to these social supports impact how a person can live healthily with HIV and/or hepatitis C— just as one’s HIV and/or hepatitis C can limit a person’s access due to stigma and lack of cultural competence.

HIV and hepatitis C work has always been, in large part, poverty mitigation and human rights work, and people working in our sectors tend to understand themselves as improving social and structural determinants of health through an HIV and/or hepatitis C lens.

Below are a series of promising programs and practices we identified through our national stakeholder survey, key information interviews and additional research we conducted as we developed this Guide. By no means is this meant to be an exhaustive list! However, it does represent strong trends seen in program offerings in organizations, CHCs and clinics across Canada.

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PRACTICES Identifying service offerings that can be expanded to people living with and/or at immediate risk of both HIV and hepatitis C

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ne of the most common services that provides health promotion interventions and education related to both HIV and hepatitis C is needle and syringe distribution programs (often referred to as needle exchanges). Why? That’s pretty clear: almost all respondents to our national stakeholder survey said that because sharing injection equipment puts people at risk of both HIV and hepatitis C, then providing new, unused injection equipment is the perfect opportunity to make information and resources about both disease conditions available.

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The success of providing both HIV and hepatitis C harm-reduction information in needle and syringe programs leads us to an important question: What services do we provide that are appropriate to people living with or at immediate risk of both HIV and hepatitis C? This question is an extension of the “what are we good at?” question from the previous chapter, but instead asks us to focus on where both disease conditions can fit in current programmatic offerings.

However, the alternate scenario may be faced by your agency. You may be interested in expanding your services to people living with or at immediate risk of both HIV and hepatitis C, but you barely have enough capacity to hold your hot lunch drop-in or food bank program as it is. If you have a great program you want to expand, one of the things you’ll need to do is raise more financial resources and/or create new partnerships with other agencies to make it happen.

Do you hold a hot lunch drop-in that attracts a large number of people who use drugs in your area? Does your outreach program make strong referrals with low lossto-follow-up to the infectious disease hospital program in your area? Do you have a high donation rate to your organization’s food bank and/or a strong partnership with food agencies in your area that would allow you to provide food security services to more people? These are interventions that are ripe for including people living with or immediate risk for both HIV and hepatitis C.

When thinking about how programs you offer may be relevant to people living with or at immediate risk of both HIV and hepatitis C, two questions to start off with are:

are our best programs / organizational • What strengths, and could these benefit people living with

or at immediate risk of both HIV and hepatitis C if they were expanded?

would be required to expand these programs / • What organizational strengths (e.g. partnerships, funds)?

Building, maintaining and strengthening partnerships

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espondents to our national stakeholder survey made it very clear that their programs and organizations cannot run without good partnerships. These include partnerships with other local organizations and institutions (such as the food bank, income support office, infectious disease or liver clinic, research centres), as well as with provincial or national organizations (like PHAC, or CATIE).

Our survey and interview respondents reported that partnerships have two primary functions—either to ensure functioning of an aspect of their program (e.g. a local church providing donations to an organization’s food bank), or to connect people to services or other engagement opportunities (e.g. an ASO nominating a member living with HIV to sit on a public health advisory committee).Many of our respondents said their partnerships were most successful when each organization, clinic and/or program had a clear and strong understanding of the key function and/or role they play. These organizations recognize themselves as having a key identity, filling a need in their communities, such as:

the source for information and training about • We’re harm-reduction. provide transitional housing for people living • We with HIV and (increasingly) hepatitis C

people are referred to us, we can efficiently • Once and supportively get people on HIV or hepatitis C treatment.

folks feel comfortable coming to us • Street-entrenched for HIV, hepatitis C and STI testing. social service organizations addressing HIV and • All hepatitis C come around our monthly coalition table.

provide support groups where people who have • We been living with hepatitis C in secret for a long time can openly talk about what’s going on in their lives.

Our outreach program is sometimes the only • connection people in our community who use drugs have to the health care system.

The first step in any partnership is knowing what your organization can bring to the table and committing to do so. Then, for a partnership to really work, organizations need to have common aims/objectives for the work they’re undertaking together, as well as ongoing communication about what’s being achieved, how it is being done, and what might make it work better. Due to this, strong partnerships should be clear on the following: objective: What are we trying to achieve • Common together? How will we know when it will be done?

Stating this as simply and clearly as possible is important in any partnership, and some organizations working together choose to formalize this in a memorandum of understanding (MOU).

measurement: Organizations should • Outcome also agree on what indicators will show that the partnership is working. Such measures could include a certain number of trainings/in-services provided by each organization to the other, a number of referrals made by the end of the year, or a number of additional organizations brought into the partnership.

Measurement may also be included in the MOU.

management: Anyone who has ever • Ongoing managed a partnership knows how important it is

to maintain proactive communication and not cut corners. It is important for representatives from each organization to define how often they’ll meet to discuss the partnership, and what process to undertake if an urgent issue arises. Partnerships are a lot of work, but to manage them methodically can deliver better, more integrated services for the people we work with.

Having solid knowledge of what role each organization or program plays, and ensuring relationships are managed clearly and efficiently, supports a strong networked response that ensures people living with HIV and hepatitis C have increased and sufficient access to the healthcare and social services they need.

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Bridging the gap between CBOs and clinical services

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ne of the main good practices throughout this Guide is identifying opportunities to strengthen networks between organizations, programs and clinics to close gaps in services for people living with and at immediate risk of HIV and hepatitis C— especially when losing people to follow up. People, especially people who have had challenging interactions with health and social services in the past, are often resistant to seek health services out of fear they will be discriminated against and/or treated poorly. This also leads to people, and especially people who experience extreme marginalization, to not seek health or social services until they’re already sick, or in the process of losing their housing, or in some kind of crisis.

Thus, the programs and services we design and deliver need to have a low threshold, ensuring when people access services, they don’t feel stigmatized. To put it another way, we all have an active role in breaking the cycle whereby bad experiences with health and social services push people back to the margins. Many organizations and clinics in our sector, especially those that operate from a harm-reduction approach that puts kindness and respect at the centre, have been very successful at becoming places where people feel safe and secure accessing services and asking for help.

It is important to keep in mind that some people living with or at immediate risk of HIV and hepatitis C may, for whatever reason, find one organization or clinic more accessible than others in your region. A person’s primary, or in some cases only, point of contact with health and social services may be the methadone clinic, a needle and syringe program, the immunodeficiency clinic, or a drop-in. Whatever organization you work in, it is not only important to ensure you’re friendly and accessible to all people who may need your services, but to ensure your links to other services are strong. After all, your organization or program may be the only route a person has to other health and social services they need.

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Co-location or coordination: Which is the better practice?

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n the national stakeholder survey we conducted when we developed this Good Practices Guide, respondents reported two main approaches to providing medical services (e.g. HIV or hepatitis C treatment, screening) with people needing low threshold services: co-location of health care providers in organizations or clinics frequented by people who use drugs, who are street involved, or experience other kinds of marginalization; or coordination between organizations more directly connected with marginalized people in need of health services with medical centres (e.g. hospitals) providing infectious disease, hepatology or other care (e.g. providing transportation, accompaniment to appointments, assisting with follow-up navigation of applying to public drug programs).

Both approaches increase access to health services for people who might not otherwise get care. However, there are pros and cons to consider of both approaches, especially if you’re thinking about incorporating co-location or coordinated referrals to health services in your program.

Co-location:

Coordination:

This practice was most frequently reported in larger urban centres, with an infectious disease specialist or other health care provider coming to a drop-in, ASO or CHC on a regular basis to meet people living with HIV and hepatitis C in places they generally felt more comfortable accessing. When a physician comes directly to an organization or clinic that’s directly in the community where a lot of people live—especially the marginalized—factors that often negatively impact access to care, like transportation to an academic medical centre or stigma from hospital staff, are minimized.

This can be a really useful strategy in cities or towns where people living with or at immediate risk of HIV and hepatitis C have low rates of accessing services, and where another, more direct intervention, is necessary. It is also a useful strategy in connecting with people living in rural or remote areas: in Saskatchewan, for example, infectious disease specialists and nurse practitioners travel to rural and remote communities at designated times throughout the year to meet their patients in local health centres, or even in their homes. While patientfriendly, this approach is resource intensive, as physicians and nurse practitioners cannot see as many people as they would in a hospital practice.

In just as many cases, organizations and hospital infectious disease or liver clinics reported close collaborative relationships to ensure strong referrals took place. In some cases, especially in Ontario’s hepatitis C team program, community health or hospital centres employed outreach workers who engage people living with hepatitis C, referring them to services, accompanying them to appointments, and working within (as part of a contribution or service agreement) or alongside CBOs. The benefit of an approach that coordinates between hospital and CHCs and organizations that people living with or at immediate risk of HIV and hepatitis C engage with most often is the strong relationship that is stewarded between multiple stakeholders addressing HIV and hepatitis C in a given community. Even better, it sets up conditions whereby larger medical services may become friendlier to marginalized people, especially people who use drugs. Also, because physicians and nurse practitioners can see more patients, this is an efficient use of resources—as long as people living with HIV and hepatitis C are coming through the door.

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Engaging the strengths of people with lived experience: “Peer” Programs

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ince the Denver Principles were first articulated at 1983’s Gay and Lesbian Health Conference, the greater and/or meaningful involvement of people with the lived experience of HIV (GIPA/MIPA) has always been central to the clinical, policy, research and organizational AIDS response—even if, in many cases, GIPA and MIPA has been only partially realized. Recently, building from the legacies of GIPA and MIPA, calls for meaningful engagement and involvement of people living with hepatitis C have also emerged (see the Resources section below)—all the more necessary with some of the fears and anxieties regarding representation that have emerged alongside the current integration agenda (see But HIV and hepatitis C aren’t the same!)

From the national stakeholder survey and key informant interviews we conducted, peer work is increasingly a part of organizations, and perceived as instrumental to programmatic success. Peer-to-peer encounters where people, especially newly diagnosed people or people initiating HIV or hepatitis C treatment for the first time, can find out what it is really like from someone who’s been there, and also talk about challenges in an open, honest

and empathetic way. Additionally, many managers in organizations identified how peer workers they employ are usually the first source of crucial information about trends in the population they’re working with, like changes in substance use patterns (including changes in the drug supply), changes in police enforcement, as well as barriers in getting access to health and social services.

The following are three themes, along with good practices/key programs, happening in the area of peer work in Canada:

a) Health navigation

Peer navigation of health services refers to any program where people with lived experience are connected with people who are newly diagnosed—a “buddy system” where the person with experience helps the newly diagnosed person find their way.

This intervention has been a touchstone of British Columbia’s Seek-and-Treat for Optimal Prevention (STOP) HIV/AIDS program. In the program, people with lived experience of HIV work out of the BC Centre for Excellence in HIV/AIDS at Providence Health Care (St. Paul’s Hospital). The BC Centre for Excellence is in a unique position because it has provincial mandate to provide treatment for HIV through its hospital pharmaceutical services, meaning the large majority of people living with HIV in BC are treated at the Centre for Excellence. Building on this strength, people with lived experience are able to connect with newly diagnosed people at their first appointment—offering peer support, advice, guidance, as well as key insights into our complex health system.

The benefits run both ways: while newly diagnosed people are connected with strong peer support that also has the competence to guide them through the health system,

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people with more lived experience are empowered to draw on their expertise as patients who have made the health system work for them.

Successful peer navigation programs rely on strong partnerships between clinics and CBOs—not only to ensure leaders living with HIV can be recruited, but to ensure newly diagnosed folks are connected with the range of services available to them. Peer navigation programs are also relevant for people undergoing hepatitis C treatment, especially because adherence is all the more crucial to ensure a best chance at achieving a sustained virological response. If you work in a clinic or a CBO and you think a peer navigation program would strengthen your services, consider connecting with other HIV and hepatitis C serving-organizations in your area to sketch out the partnerships and programming required to bring the program to life as well as potential funding sources. To learn more, check out the Resources section below.

b) Outreach and peer support

Many respondents to our national stakeholder survey reported employing people with lived experience as peer outreach workers. Peer positions included providing harm-reduction materials in a needle and syringe program or on street outreach, as well as providing peer support as a part of a multidisciplinary hepatitis C treatment support team.

While it shouldn’t be surprising to anyone who’s ever worked in the HIV and hepatitis C sectors, our national stakeholder survey reflected the importance of the unique relationship that occurs between people with lived experience. The common understanding of what it is like to really have been there is very powerful—whether that shared experience is of HIV, hepatitis C, drug use, or stigma more generally.

injection), changes in drug availability (e.g. removal of prescription opiates from the market leading to an influx of heroin or crystal meth) or challenges people are facing in accessing a given clinic or drop-in, that will allow you, in turn, to change your harm-reduction messaging, overdose prevention messaging, or to directly engage a partner organization to address how they are treating service users you are working with.

Because of this, when peer outreach and support workers are meaningfully included as a part of your organization or clinic’s structure, your organization is more likely to appear friendly and welcoming to people who need your services. The importance of the feeling of recognition that comes with seeing your own image reflected in an organization is particularly important for people who might be seeking out services but have had negative experiences with the health system before, due to colonization, stigma, exploitation, or other issues.

While engaging peer workers demonstrates an organization or clinic is friendly, relevant and safe for a given community, and also allows organizations to ensure their program and service offerings are relevant to changing needs, the most important reason to engage peer workers is to walk the talk. How well peer workers assess the health of your organization is indicative of how functional your programs and services are. To put it another way, if there’s something wrong with how your organization is engaging with the communities you’re working with, your peer workers should be able to tell you first; and, as we build on below, it is important to ensure peer workers are engaged by your organization in a way that respects their rights as workers and as service users, so they can be honest with you about their needs, where they’re at, and how they relate to their role(s) within the organization.

A number of our key informant interviews also indicated peer outreach workers in particular are fundamental to an organization learning more accurately about what’s going on in the communities they’re working with.

Engaging peer outreach workers as key informants for your organization means you’ll more quickly learn about changes in substance use patterns (e.g. smoking to

c) Clarifying scope of work and compensation

Peer work is work, and it needs to be compensated accordingly. While much of the HIV and hepatitis C responses have thrived from dedicated volunteerism, including unpaid efforts from many people with lived experience of HIV and hepatitis C, the core organizational functions carried out by peer workers is different, and peer workers deserve fair compensation.

While the need to pay peers was almost universally reflected in our national stakeholder survey and key informant interviews, in practice, it occurs less often because of the usual refrain of not having sufficient financial resources. One constraint organizations encounter when trying to pay peers is that some funders do not allow you to compensate people with lived experience on a part-time or honoraria basis. Because compensation arrangements need to be flexible for people with lived experience (organizations employing peer workers must be extra vigilant to ensure the way they’re providing compensation doesn’t mean a person will have social assistance payments clawed back, nor

will they have their health care and drug coverage put in jeopardy), funders and organizations must work together to ensure compensation is made available and can be paid to people in ways that don’t disadvantage them for working in the first place. While not always a precise fit, Employment and Social Development Canada’s resources on Employment and Disability may prove instructive to organizations working in this area.

Paying peers shouldn’t be understood as optional— something an organization intends to start doing with existing peer workers at a time in the future once funds have been secured. If organizations are not in a position

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where they can compensate peers appropriately, they should consider whether it is appropriate to engage peers in the first place.

As important as compensation for peers is clarifying the scope of work from the outset, many peer workers have been engaged by organizations without clear communication of how long, for what purpose, and with what coaching and evaluation strategies their work will be engaged. This, in turn, can create tense and unfair relationship strains between peer workers and organizational staff, on whom peers—wearing their other hats as service users—must rely for assistance,

counseling, etc. Peer work, in addition to providing benefits to organizations and financial compensation for workers, must be seen as a capacity building exercise with activities, learning goals, and a clear beginning, middle and end. Additionally, where possible, peers should not be supervised by organizational staff from which they also receive services, like a nurse or a case manager. Also, it is of the utmost importance to remember the “end” part of peer work: peer positions won’t be held forever, and so it is important to work with peer workers from the outset to envision what they want to be doing after they’ve finished the position, and how work the undertake in the position can help them reach that goal.

An integrated approach to HIV and hepatitis C health promotion: coordinating approaches

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s anyone who runs a needle and syringe program can tell you, providing health promotion education about both HIV and hepatitis C is absolutely fundamental. In some places, especially in the north, it is also extremely important to provide messaging about tuberculosis (TB). In fact, the vast majority of respondents to our national stakeholder survey said they started undertaking an integrated approach to HIV and hepatitis C because of needs presented and lessons learned within their needle and syringe distribution program.

Providing harm-reduction equipment such as needles, syringes, crackpipes and related materials is important because it empowers people who use drugs to have autonomy over their substance use, including reducing or eliminating their exposure to HIV or hepatitis C. Furthermore, for people who are already living with HIV and hepatitis C, access to new, unused equipment allows them to not expose their friends, lovers and partners to either virus.

Harm-reduction programs can also provide an important opportunity to engage in conversation with people who use drugs, especially those who may not be accessing other health services—either at your organization or elsewhere.

Through our survey and key informant interviews, people shared the following health promotion messages/interventions they often make when engaging with people through their harm-reduction program:

people accessing services their privacy, while • Ensuring also offering an open door to speak about substance

use, harm-reduction, or referrals to other health and social service organizations.

both safer injection and safer smoking • Providing equipment to ensure people have access to the equipment that’s best and safest for them.

about various substances, safer drug use, • Discussions and overdose prevention. between HIV infection and hepatitis C • Differences infection.

• Testing and diagnosis for HIV and hepatitis C. • Differences in HIV and hepatitis C transmission risk. in overdose, HIV and hepatitis C risk • Differences between injecting and smoking drugs (or other modes of drug ingestion).

safer injection and smoking • Demonstrating technique, especially for women and younger service users, to empower people to have autonomy over their own drug use.

This final point, on ensuring safer injection and smoking technique is demonstrated for people accessing your services, is particularly important, as anecdotal and some scientific evidence has shown that people who are newer to injection, especially young people and women, are more likely to inject with someone more experienced, and go second on the needle. In line with this, a number of our key informant interviewees expressed that providing effective interventions to prevent hepatitis C transmission is very challenging, as many people, when they initiate injecting, are exposed by sharing needles with someone more experienced, before they ever have the opportunity to access a harm-reduction 38

program. This reiterates the importance of engaging as many people as possible who access harm-reduction programs on HIV and hepatitis C transmission information, as well as the need to implement evidence-based substance health curriculum in schools so all people have access to harm-reduction information and referrals.

For more on best practices for harm-reduction programs in Canada, check the Resources section below for a link to the exceptional 2013 publication Best Practice Recommendations for Canadian Harm-reduction Programs that provide services to people who use drugs and are at risk for HIV, HCV and other harms.

Treatment support programs: Learning from each other

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ne key similarity between HIV and hepatitis C is the importance of strict adherence once a person has initiated treatment. Many clinics (especially nurses), CBOs and pharmacists have extensive experience providing formal and informal adherence support, and there are a lot of lessons HIV and hepatitis C can teach each other in this area.

Adherence support programs have gained renewed attention in the last few years, especially with the renewed emphasis on hepatitis C treatment as therapies have emerged with improved efficacy, with an interferon-free era right around the corner. On the HIV side of things, a number of formal and anecdotal evaluation showing many people living with HIV aren’t achieving full benefits of treatment due to interruptions. In turn, adherence has achieved unfortunate emphasis in the context of HIV criminalization, where having a detectable viral load makes people living with HIV targets for malicious, opportunistic prosecutors.

There are many reasons why people may have difficulty adhering to treatment on an ongoing basis, including:

effects (especially nausea and fatigue), while • Side they may not be felt consistently, might come on

unpredictably, negatively impacting how people work and live.

treatments (especially interferon-containing • Many hepatitis C regimens) have major mental health complications that impossible, to bear.

are

extremely

difficult,

if

people can only access a month’s worth of • Most treatment at a time, and so people may run out of treatment during longer periods of work-related or personal travel.

lipodystrophy-related side effects are not • While as pronounced with new HIV therapies, people,

especially women, still experience changes in body shape, hair loss, etc., which can lead to real challenges for self-image.

treatment means a person has to confront • Taking the reality of their HIV or hepatitis C sero-status every day, which can be profoundly triggering and/ or isolating.

While the reality of taking treatment when prescribed, as prescribed can be challenging, some exciting program offerings across Canada are increasing one-on-one

and group support around treatment initiation and adherence. AIDS Community Care Montreal (ACCM)’s program, My Life With HIV, has recently been expanded to address hepatitis C, and has been expanded into a national train-the-trainer program. My Life With HIV is an intervention that takes place over six three-hour sessions, allow participants to “recognize their own health needs, identify the barriers to achieving those needs, and to develop the strategies necessary to surmount those barriers.” The group intervention is also supplemented with one-on-one sessions with the facilitator.

It is important that people have access to a treatment support program, either through a clinic, CBO, or other setting. While My Life with HIV is a great program— even more so now it has been expanded to address hepatitis C—it is important to point out that it, or a combination of other approaches, might be the treatment support intervention that works for your organization or clinic. My Life With HIV grew out of a needs assessment of ACCM’s membership’s treatment-related needs, and so including questions about how people are accessing treatment and what challenges they’re facing into an organizational needs assessment carried out at particular intervals is a good practice (see the previous chapter, We do what makes sense). Additionally, any psychosocial support intervention related to treatment needs to be supported by strong partnerships, ensuring the route to people accessing treatment (e.g. through catastrophic drug programs and pharmacies) is as easy as possible.

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Keeping your programs on the right track: meaningful engagement and advisory groups

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ne way GIPA and MIPA is most commonly practiced in Canada is ensuring people with lived experience sit on an organization’s Board of Directors. While this is an important practice, there just aren’t enough seats on a Board for a wide variety of people to be at the table. Additionally, Boards are responsible for the overall function and direction of organizations, and oversight of actual program offerings occupy a relatively small part of the agenda.

The Toronto Community Hepatitis C Program, a multidisciplinary care program, has implemented a Patient Advisory Board. The Toronto Community Hepatitis C Program places a support group at the centre of its care model, and so each treatment support group is given the opportunity to elect 2 representatives to its Patient Advisory Board, and they serve two year terms.

The Patient Advisory Board provides oversight and insight to all aspects of the program, including how the support group functions, access to health services at the CHC, how new program offerings are developed, as well as giving input into new research and evaluation designs being conducted in the program, as well as assistance preparing and reviewing manuscripts for publication.

The Patient Advisory Board at the Toronto Community Hepatitis C Program meets once monthly (or more frequently as needed), and is chaired by the patient co-chairs. The Advisory Board receives administrative support from the Hepatitis C Program Coordinator, and so organizations instituting a Patient Advisory Board must devote staff time and resources to supporting and enhancing the capacities of the patient members.

A Patient Advisory Board, or similar body, should be in place in all organizations and clinics providing services to people living with HIV and/or hepatitis C. While not an easy task, if your program or organization is healthy and respectful of the realities of people with lived experience, an advisory body can really strengthen how people are included, along with strengthening your program offerings themselves.

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Sexual Transmission of hepatitis C for HIV-positive gay men: integrating an area of increasing need into your programming

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ver the past few years, increased rates of hepatitis C attributed to sexual transmission have been found in cohorts of people living with HIV in the UK, United States, Europe and Australia. In these cohorts, rates have been quite low amongst HIV-positive women, and one 2013 UK study found very low rates of hepatitis C amongst HIV-negative men.

While there is very limited data, and the sexual transmission of hepatitis C is poorly understood, sexual transmission largely appears to be a health issue for HIV-positive gay men. And even though we don’t have a strong understanding of the sexual transmission of hepatitis C, as Gay Men’s Health Crisis co-founder Laurence D. Mass said in a 2013 op-ed in The Huffington Post, it is unacceptable to remain silent about sexually transmitted hepatitis C in HIV-positive gay men.

There are two major reasons why sexual transmission of hepatitis C amongst HIV-positive gay men is important for us to pay attention to. First, we know for most people living with HIV and hepatitis C co-infection, their hepatitis C progresses rapidly, with substantial liver damage occurring within 10 to 15 years. Second, awareness of hepatitis C amongst gay men is quite low—largely due to it being poorly understood—although it is beginning to be talked about more and more, and people are seeking resources to understand further.

Here’s what we do know: C is being transmitted sexually between • Hepatitis HIV-positive gay men. In a 2013 article in HIV

Medicine it was reported that hepatitis C was about 7 times more common amongst the HIV-positive men in the cohort than the HIV-negative men.

the same study, a history of syphilis infection was • Inassociated with hepatitis C infection in HIV-positive

gay men, likely pointing to syphilis inflaming mucous membranes, making people more susceptible to hepatitis C transmission.

2010 article in Hepatology reviewed common • Apractices between HIV-positive men in multiple

cohort studies who had acquired hepatitis C sexually.

Common sexual practices included group sex and rougher sex (e.g. fisting and using sex toys). This suggests the key thing we need to be aware of when considering how to reduce risk of sexual transmission is the presence of blood (and blood-to-blood contact) when having sex.

also evidence that hepatitis C re-infection • There’s (through subsequent contact) may be occurring

for many HIV-positive gay men who have already undertaken treatment to clear their hepatitis C. Because of this, hepatitis C testing should be offered to HIV-positive gay men more frequently.

the exact mechanics of hepatitis C sexual • Although transmission remains poorly understood, and

although cohort study surveys have associated sexual transmission with smoking drugs (especially crystal meth and cocaine), the notion that use of injection drugs by gay men is under-reported has been raised by many researchers and service providers. This suggests HIV-positive and HIV-negative gay men, as well as policy-makers, researchers and service providers need to come together to share experiences about substance use in our communities, identifying potential policy change and research/service provision recommendations to close this gap.

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For whatever reason, there has been resistance to addressing the sexual transmission of hepatitis C—in the academic literature and in much programming, there has been a strong emphasis on hepatitis C as a blood-borne infection only.

However, from this point forward, the evidence shows that sexual transmission of hepatitis C is a crucial health issue for gay men living with HIV, and it needs to be taken seriously and incorporated into our policy response as well as all existing as well as expanded funded programs engaging HIV-positive gay men.

Because addressing hepatitis C sexual transmission means we need to engage with HIV-positive gay men’s sexuality, it is of utter importance that messaging about sexual transmission be developed with HIV-positive gay men at the centre so that health promotion information isn’t stigmatizing. While examples of stigmatizing messages are too frequent to count, many of us surely recall how HIV superinfection (e.g. becoming infected with more than one strain of HIV) occasioned health promotion messages that were shaming to men who had sex without condoms and/or men with more than one sex partner. Health promotion messages about sexual transmission must appreciate the sexual practices of many HIV-positive men.

It is important to start including health promotion about the sexual transmission of hepatitis C in our programming that engages HIV-positive gay men. To do this, a good practice is to put the issue to the HIV-positive gay men engaged in your organization or program. Hold a focus group or a consultation meeting to brainstorm ideas, such as:

• How do you, as HIV-positive gay men in our organization, want to learn about hepatitis C? • What kind of information do you need? are your ideas about reducing risk/what are you doing right now to reduce risk of hepatitis C transmission in • What your sexual practices?

• What thoughts and feelings come up for you when we talk about sexual transmission of hepatitis C?

Because of this, some great places to include health promotion messaging and materials about sexual transmission of hepatitis C amongst HIV-positive gay men could be:

• In gay men’s sexual health programs (like the Gay Poz Sex Project at ACT and Positive Living BC) • In immunodeficiency clinics (e.g. offering frequent hepatitis C-testing as a part of regular diagnostics for HIV-positive men)

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QUESTIONS

• What is our program’s expertise? role do we play in the network of organizations we work with to serve the population living with or at immediate • What risk of HIV and hepatitis C (amongst other conditions such as poverty, precarious housing and employment, food insecurity)?

• What can we do to fill the gaps?

• What gaps currently exist that we aren’t able to fulfill—and what can we do to help draw attention to these issues?

• What HIV or hepatitis C-specific programs or services do we offer that might be applicable to both populations?

• How do we navigate and monitor the outputs of work we conduct in partnership?

• Does coordination or colocation make more sense in our organization/in our region?

• Is peer health navigation an intervention that would make sense in our organization/in our region? does our organization learn what we learn about what’s happening with the people we provide services to (e.g.

• Where changes in drug supply/availability, emerging barriers to health services, etc.)?

you compensating peer workers fairly? If not, what’s your plan to ensure you’ll be able to compensate them in • Are the near future?

• Where can HIV or hepatitis C messages be incorporated in existing health promotion resources/interventions?

• Would a treatment support program enhance our services? How would we implement one in our organization? does GIPA/MIPA look like at our organization? Are people living with hepatitis C also meaningfully involved • What in our organization?

• How would we implement a Patient Advisory Board or similar structure in our organization? are practical steps we would need to undertaken to address the sexual transmission of hepatitis C in our • What programs engaging HIV-positive gay men? What would be the challenges?

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Resources: In Summary: Promising Programs: Moving from an HIV and hepatitis C-centered approach to addressing broader social and structural determinants of health identified good practices (e.g. programs

and services) organizations across Canada that have successfully undertaken integrated approaches to HIV and hepatitis C are doing, including: existing, well-functioning programs • Identifying with the capacity to expand to people living with or at immediate risk of HIV or hepatitis C that could improve health outcomes for either group

new partnerships to support an integrated • Building approach, and sustaining or expanding existing

partnerships between your organization and other groups

the gap between community-based • Bridging organizations (CBOs) and clinical services by strengthening and/or standardizing referral pathways—either by coordinating services between sites, or co-locating services traditionally offered by one organization (e.g. an infectious disease clinic at an academic health centre) at another site (e.g. a CBO)

peer programs that engage the skills of • Expanding people with lived experience, especially in peer health

navigation and outreach functions—structuring positions so they provide fair compensation, clear capacity building objectives, and a pathway to more stable or permanent work

HIV and hepatitis C-related information • Coordinating in health promotion interventions, especially needle

HepCBC’s HCV Manifesto is available online here: http: // hepcbc.ca /wp-content /uploads /2014/02/ HCV_ MANIFESTO_20140116.pdf A summary of peer navigation programs in British Columbia is included in CATIE’s Shifting the Paradigm: the history of the Vancouver STOP HIV/AIDS Project, available here: http:// www.catie.ca/sites/default/files/stop_EN_2013_10_07.pdf Carol Strike et al., Best Practice Recommendations for Canadian Harm-reduction Programs that provide service to people who use drugs and are at risk for HIV, HCV and other harms, available: http: //www .catie .ca /sites /de fault /f iles / bestpracticeharmreduction.pdf Ontario HIV and Substance Use Training Program (OHSUTP), www.ohsutp.ca For references on the sexual transmission of hepatitis C amongst HIV-positive gay men, please see: CATIE has produced two fact sheets on sexual hepatitis C transmission amongst HIV-positive gay men. For the most recent update (April 2014), see http://www. catie.ca/en/catienews/2014-04-03/studies-investigatepresence-hepatitis-c-virus-among-gay-and-bisexual-men; for additional information, see the 2011 fact sheet (http://www.catie.ca/en/pif/spring-2011/sexual-transmissionhepatitis-c-are-hiv-positive-gay-and-bisexual-men-risk) See also: Bradshaw et al. “Sexually transmitted hepatitis C infection: the new epidemic in MSM?” Current Opinion in Infectious Diseases. 2013 Feb 26 Mass, Lawrence D. “Gay men should be tested for hepatitis C,” The Huffington Post, October 30, 2013, available: http:// www.huffingtonpost.com/lawrence-d-mass-md/gay-menshould-be-tested-for-hepatitis-c_b_4173735.html

and syringe programs, testing environments—and, increasingly, incorporating hepatitis C into programs that engage HIV-positive gay men

Price et al. “Hepatitis C amongst men who have sex with men in London—a community survey,” HIV Medicine 14.9 (October 2013)

adhering to HIV and hepatitis C therapies

Schmidt, et al. “Prevalence of hepatitis C in a Swiss sample of men who have sex with men: whom to screen for HCV infection?” BMC Public Health. 2014 Jan 6

structures, such as a Patient Advisory Board

van de Laar et al. “Evidence of a large, international network of HCV transmission in HIV-positive men who have sex with men.” Gastroenterology, 2009 May

treatment support programs that build • Providing on lived experience and resilience of accessing and advisory bodies comprised of people • Incorporating with lived experience in organizational or program

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Common Approaches: Integration and Capacity Training

ISSUES In the national stakeholder survey and key informant interviews we conducted while developing this Good Practices Guide, the people we spoke with time and again emphasized the importance of staff and volunteer capacity training—what they do, how they plan it, and where current gaps exist in terms of information.

In part because we have been developing a Good Practices Guide with tips on how to do HIV and hepatitis C work from an organizational perspective, we have been driven in this task by the goodwill and genuine desire for organizations to engage with each other more often and more in depth to share successes and strengthen our sector.

The following represent common threads in staff and volunteer training programs across Canada:

This section outlines key things organizations across the country are doing to train staff and volunteers in HIV, hepatitis C, the social determinants of health, harm-reduction, substance health, sexual health, and poverty mitigation. Almost uniformly across our survey, organizations said they rely heavily on print and online materials, as well as in-person training opportunities, offered by CATIE—Canada’s national knowledge broker on HIV and hepatitis C. Using CATIE materials as a groundwork, many organizations have built additional learning opportunities into their ongoing staff and volunteer development plans.

The vast majority of our interviewees said one thing that’s easy about training in our sector is that the vast majority of candidates bring eager interest and often a personal commitment to our work. This was especially true for public health nurses and CHC staff, who said there are often waiting lists to come and join their programs.

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PRACTICES Identify common learning needs for staff and volunteers in your organization; develop and implement a common training plan, tailoring common resources to your organization’s context.

The following are a series of capacity training modules identified by our survey respondents and interviewees, divided in two categories: onboarding (initial training offered upon hire) and ongoing learning (undertaken as employees become more familiar with their job role).

Onboarding: 101: Many organizations, in Canada and around the world, have developed a wide variety of introductions to • HIV HIV—including disease progression, transmission, key priority populations and the social determinants of health.

For a repository of many Canadian HIV knowledge exchange materials, check out CATIE’s Ordering Centre at www.catie.ca.

C 101: Fewer resources are available for hepatitis C, due to inadequate attention paid to global hepatitis • Hepatitis C epidemic. CATIE’s www.hepcinfo.ca provides clear and concise education, as well as in-depth information, on prevention, disease progression, and treatment.

101: For people working with people who use drugs, a strong knowledge of harm-reduction principles • Harm-reduction and practices, especially safer injection, safer smoking, and overdose prevention and awareness is essential. Amongst many resources, the Ontario HIV and Substance Use Training Program (OHSUTP) provides workshops to Ontario health care providers. Visit www.ohsutp.ca to learn more.

Use 101: Many organizations we engaged provide capacity training about substance use through • Substance preceptorships, one-on-one training between new staff and people who have been working in the field for a long

time. This is important because substance use patterns and availability varies from place to place and region to region.

OHSUTP (www.ohsutp.ca) and the TRIP! Project (www.tripproject.ca) have excellent resources.

Preceptorships were near-universally cited as foundational for new employees, and seasoned employees • Preceptorships: taking on new job functions, for hands-on learning and guidance from people and organizations who have excelled in the field. This was especially identified by people working in public health and clinical settings. It was also identified that in areas with provincial strategies, preceptorship and other staff capacity training programs were easier to manage (from a local perspective), because common training objectives and guidelines were able to be centrally managed, and resources were set aside for new employees to travel to more established organizations for training.

Ongoing Learning HIV and hepatitis C treatment are both complicated fields, and it often takes staff awhile before they can • Treatment: incorporate detailed treatment information into their learnings. However, the emphasis on treatment is increasing

in organizations—in part because hepatitis C is transitioning from a chronic disease to a curable disease due to innovative therapies, and in part because of the increased emphasis on HIV treatment as prevention and using HIV therapies for pre- and post-exposure prophylaxis. CATIE (www.catie.ca) is the go-to Canadian source for treatment information, and CTAC (www.ctac.ca) can update you on the availability, by drug plan, of new HIV and hepatitis C treatments. Regarding the pipeline of new HIV and hepatitis C treatments, New York’s Treatment Action Group (TAG) and UK’s i-Base’s annual Pipeline Report (www.pipelinereport.org) is an invaluable resource.

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and Workshops: Conferences and workshops are crucial for professionals in our sector to update their own • Conferences knowledge, to learn about major research, policy and program questions being addressed in the field, to identify gaps, and to connect with peer professionals. CATIE (www.catie.ca) maintains a list of upcoming Canadian (and relevant international) conferences, and for those who can’t attend in person, do a great job through their Learning Institute of summarizing key learnings.

Webinars are increasingly offered in our sector to transfer knowledge about new research, policy and • Webinars: program work by bringing people together virtually—saving costs on hosting in-person meetings. Over the past year, major webinar offerings have been made by many of the national HIV partner organizations, including CATIE (www.catie.ca), CTAC (www.ctac.ca), the Canadian AIDS Society (www.cdnaids.ca), and the Interagency Coalition on AIDS and Development (www.icad-cisd.ca), and PHAC has also provided a series of program and key population updates by webinar. Each organization has an e-mail list that can be subscribed to on their websites.

Don’t forget about volunteer training!

Many of you—especially in managerial capacities—pay a lot of attention to staff training—in part because we are responsible for the professional development and evaluation of our staff members. Organizations should not forget or neglect volunteer training. After all, most of our organizations rely on the contributions of our dedicated volunteers, and so important opportunities for their own learning are taken seriously—with planned outcomes and scheduled at regular intervals.

It should be kept in mind that many volunteers, especially those living with HIV or hepatitis C, view volunteering as capacity training and an important launchpad back into or into another area of the workforce. Because, it is essential to structure volunteer opportunities with a clear learning “arc,” as well as communicate clearly about the availability (or lack thereof) of paid positions in your organization (see, especially, “Peer programs” in the “Promising programs” chapter). All organizational leaders need to ensure the right balance is struck with volunteer programs—creating and stewarding opportunities that are engaging, satisfying and allow people to learn, while not exploitatively off-loading core organizational activities on to people who are unpaid.

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QUESTIONS

• What is your organizational staff and volunteer training program?

• What training needs to be offered at onboarding?

• What training do you offer on an ongoing basis?

• What external resources to you engage in order to provide your training?

• How does your volunteer training program differ from your staff training?

• How well defined are your volunteer opportunities/roles—including expectations for learning and growth? gaps are present in your training materials? Are there other organizations you could work with to build a • What new training resource to meet that gap?

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Resources: CATIE: www.catie.ca CTAC: www.ctac.ca Hep C Info: www.hepcinfo.ca Ontario HIV and Substance Use Training Program (OHSUTP): www.ohsutp.ca TRIP! Project: www.tripproject.ca TAG and HIV i-Base Pipeline Report: www. pipelinereport.org Canadian AIDS Society: www.cdnaids.ca Interagency Coalition on AIDS and Development: www.icad-cisd.ca

In Summary: Common Approaches: Integration and Capacity Training identified practices organizations

across Canada are using to provide capacity training to staff and volunteers, such as:

foundational training areas for staff and • Identifying volunteers, both at onboarding as well as a part of ongoing staff/volunteer development

a variety of training opportunities appealing • Providing to numerous learning styles, including workshops,

conferences, preceptorships and web-based learning (e.g. webinars)

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Conclusion Most of the good practices highlighted in this Guide promote closing the loop between various services (e.g. testing, treatment, community-based support, food security, income security, etc.) One conclusion people may be tempted to take away from this Guide is: doesn’t it make most sense to locate all services relevant to HIV and hepatitis C in one organization, and ensure that organization is the most financially resourced and stable, (e.g. a clinic)?

Indeed, much of the current hepatitis C response is located in clinics. Many people may be tested, diagnosed, treated and cured without ever stepping into a CBO. This is much less the case in HIV, although there are some places throughout the country, especially where the burden of new HIV infections have been more recent, where most HIV work is being conducted in a clinical setting.

If we were to re-build the HIV and hepatitis C responses from scratch today, would all service provision take place in a clinical setting? And if not, would it take place in conventional social services, like the disability services office or in an employment centre? Recalling this Guide’s introductory chapter, the whole parallel set of HIV services was built because the public system was too homophobic and too stigmatizing to people who use drugs to treat them appropriately during the AIDS crisis. With that in mind, shouldn’t our end goal be to change attitudes and gain sufficient inclusion so we can put our parallel system of services out of business?

One reason why many people may be feeling anxiety about PHAC’s decision to merge community funds is that there’s a feeling the community-based HIV and hepatitis C responses may be perceived as outliving their usefulness. But that is only a perception. After all, it is not for nothing that there has been a strong, ongoing resistance throughout both epidemics to lose or erode the community-based response.

expressing stigmatizing attitudes toward one another, rather than identifying and organizing around common struggles.

If this Good Practices Guide on undertaking an integrated approach to HIV and hepatitis C has one overarching goal, it is to make the organization and administration of our response stronger and more accessible to the people who we serve, so they experience fewer gaps, less stigma, and increased health outcomes. In doing so, this Guide seeks to enfranchise everyone in the kind of collective action that fights for a cure that’s available to all people living with HIV and hepatitis C, and to ensure the final lessons we take from the HIV and hepatitis C movements support ongoing efforts to end poverty, colonization, racism, xenophobia, housing insecurity, food insecurity, the war on drugs, homophobia, transphobia, and all other negative determinants of health that affect us, the people we provide services to, and the people we care about.

After all, as many practices in this Guide indicate, even when we’ve cured HIV and hepatitis C, many injustices we are all working to eliminate will remain.

While documents like this Good Practices Guide show all the great reasons for developing partnerships, linking services, increased coordination or implementing colocation, it also shows the needs for a strengthened community-based response: after all, after far too long, people living with HIV and hepatitis C continue to die of poverty, not either disease; we don’t have sufficient housing, food security or income security for the people we work with; our communities are too often divided,

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Notes