Nothing about us without us:

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• Nothing about us without us
• Greater, meaningful involvement
• of people who use illegal drugs
• in the response to HIV/AIDS
• XVI International AIDS Conference
•  Toronto, 15 August 2006
• Ralf Jürgens, Consultant

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Acknowledgments

• Project partners
• Canadian HIV/AIDS Legal Network
• Vancouver Area Network of Drug Users
• CACTUS Montreal
• BC Centre for Excellence in HIV and AIDS
• Project Advisory Committee
• Over 100 people who use drugs
• Funding
• Public Health Agency of Canada

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Dedication

• The project is dedicated to the memory of
• people who use drugs
• who have died of AIDS
• in Canada and internationally.

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Objectives

• to increase the capacity of NGOs and governments
  to involve people who use illegal drugs
• to increase the involvement of people who use
  illegal drugs

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Scope

• funded by Public Health Agency with HIV/AIDS
  funding
• focus on the involvement of people who use drugs
  in HIV/AIDS programs and services
• concern for quality of life, dignity, and human
  rights
• (not just disease prevention)

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Methods/Activities

• project advisory committee
• literature review
• extensive consultations
• with people who use drugs
• with staff and board members of organizations
  providing services to people who use drugs
• draft documents
• peer review
• long paper, short booklet, manifesto

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Language

• People who use illegal drugs rather than drug
  users

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Brief history of GIPWUD (Canada)

• VANDU founded in 1997
• some other groups, but with no or little funding
• 2003/2004 national capacity-building project
  (Creating vectors of disease control)
• 2005 2 groups start in Alberta, 1 group starts
  meeting at CACTUS in Montreal
• 2006 first national meeting in Vancouver and
  then?

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Why GIPWUD?

• ethical imperatives (all people should have the
  right to be involved in decisions affecting their
  lives)
• human rights imperatives (GIPA and GIPWUD are a
  specific expression of the right to active, free,
  and meaningful participation)
• public health imperatives (simply put,
  interventions will be more effective if people
  who use drugs are involved in design,
  implementation, and evaluation)

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Why is GIPWUD so important?

• If it had not been for the unsanctioned safe
  injection site that we opened, it might have
  taken much longer for the sanctioned one to open.
• (VANDU)

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Issues and challenges

• Involvement in consultations, decision-making
  bodies, and advisory structures
• difficulty of acknowledging drug use (and HIV
  status) publicly
• lack of organizations prepared to involve people
  who use drugs
• lack of skills and preparation for people who use
• lack of proper conditions for people who use
  within organizations, at consultations, and at
  conferences

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Consulting with people who use drugs Examples of
dos and donts

• Do invite several of us
• Dont invite just one of us
• Do invite a user group to select representatives
• Dont hand-pick always the same user you know
  and are comfortable with
• Do invite an active user
• Dont only always invite former users

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Consulting with people who use drugs Examples of
dos and donts

• Do provide an honorarium
• Dont assume that we dont need an honorarium or
  would just spend it on drugs (or that it wouldnt
  be justified even if we did)
• Do show flexibility with meeting times
• Dont hold a meeting at 9am or on welfare cheque
  day
• Do acknowledge that you may have needs, too, and
  that unfamiliarity may make you uncomfortable
• Dont assume that I am the problem and the only
  one who needs to learn

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Issues and challenges

• Organizations of people who use
• My group has no cash.
• (Carol Romanow)
• It is almost impossible for an IDU group to
  continue for more than a short period without
  funding of some type. This is because IDUs tend
  to be poor, it is close to impossible for a
  core group to continue working if none of them
  are paid.
• (Dave Burrows)

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Issues and challenges

• Organizations of people who use
• balance between services and advocacy
• finding time, and gaining acceptance for, an
  agenda that goes beyond HIV/AIDS and HCV

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Recommendations (1)

• explicit recognition by Health Canada and the
  Public Health Agency of Canada, as well as by
  provincial/territorial and local governments, of
  the unique value of organizations of people who
  use illegal drugs
• funding and capacity building initiatives for
  groups of people who use drugs

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Recommendations (2)

• participation by people who use drugs in all
  consultations, committees, and fora where
  policies, interventions, or services concerning
  them are planned, discussed, researched,
  determined, or evaluated, with adequate support,
  training, and financial compensation
• efforts to increase involvement of people who use
  drugs in community-based organizations

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Recommendations (3)

• greater, meaningful, and sustained involvement of
  people living with HIV in all aspects of Canadas
  response to HIV/AIDS
• Canada should promote greater involvement of both
  people living with HIV and people who use drugs
  at the international level

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For more info

• More information can be found on the Canadian
  HIV/AIDS Legal Networks website www.aidslaw.ca

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Human Rights and HIV/AIDS Now More than Ever!