History of the HIV Endemic Task Force (HETF) and its

1
History of the HIV Endemic Task Force (HETF) and
its Activities Retracing the Footsteps

• Presenters Esther Tharao and
• Dr. Robert Remis,
• on behalf of HETF

2
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (1)

• Stigma and denial as we know and understand it
  has and continues to influence the response to
  HIV/AIDS among communities across the globe and
  African and Caribbean populations in Ontario and
  in Canada are not any different.
• Most are diagnosed when they are already sick or
  when their children get sick and are diagnosed as
  being HIV positive or having AIDS before the
  parents.
• There is limited access to services include
  diagnostic services hence limited access to early
  treatment for the infected. This is a big problem
  considering that access to treatment leads to a
  longer, healthier and better quality of life.

3
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF(2)

• In the mid 90s, increase in numbers of those
  infected with HIV amongst African and Caribbean
  populations was first noted by service providers
  there was increase in numbers being diagnosed
  with HIV and those seeking HIV/AIDS care and
  support services (anecdotal information).
• In 1998, for the first time something was
  reported about HIV within African and Caribbean
  populations as a result of maternal transmission
  and to those dying from AIDS.

4
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (3)

• Reports from Dr. Susan King, Ontario HIV
  Pediatric Network indicated that between 1994-96,
  70 of maternal-infant transmission of HIV
  infection had occurred amongst persons from
  Endemic regions (Africa and Caribbean)
• By 1998 there were 116 mother infant pairs in the
  perinatal database who were born in Sub-Sahara
  Africa (75) and the Caribbean (25)

5
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (4)

• In 1996 approx. 10 of those diagnosed with AIDS
  were from the African and Caribbean communities
  compared to 3 of AIDS cases diagnosed previously
• 32 of women who had died from AIDS in 1996 were
  African and Caribbean women
• The populations also had a higher AIDS related
  mortality rate compared to the general Ont. Pop.
  As a whole (14.0 compared to 4.2/100,000)

6
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (5)

• Though this statistics indicated a growing
  problem, there was no research available
  documenting the extent of and the impact of the
  infection on the African and Caribbean
  communities
• Anecdotal information by service providers
  working with these groups was never taken
  seriously
• This lack of epidemiological data made it
  difficult to obtain funding to mount effective
  strategies to fight the epidemic

7
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (6)

• In 1997 at the Canadian Association of HIV/AIDS
  Research Conference held in Ottawa, those of us
  who attended this conference were all amazed that
  not one single researcher was doing any research
  within these populations to quantify or deal with
  the problem in a systematic manner
• In the same year, organizations providing
  services to African and Caribbean groups started
  exploring individually effective ways of dealing
  with the situation

8
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (7)

• In 1997 we had the first African forum organized
  by ACHES and APAA with a Keynote speaker from the
  then Laboratory Centre for Disease Control
  (LCDC), Health Canada who we had met at the CAHR
  conference earlier in the year
• We invited him to the forum to talk to us about
  the extent of the HIV/AIDS within African
  communities living in Canada.

9
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (8)

• During the forum he informed us that the federal
  government did not have the information we were
  looking for and that without involving the
  Ontario Ministry of Health we were not going to
  obtain the information even in the future.
• He advised us to approach the AIDS Bureau to see
  how we could deal with the issue in a proactive
  way
• By then the Black Coalition for AIDS Prevention
  had already started discussions with the AIDS
  Bureau as a result of the CAHR conference which
  they had also been part of.

10
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (9)

• In 1999, the two groups were brought together to
  form what was then called the HIV Endemic Working
  Group. The organizations involved at the time
  included ACHES, Black CAP, APAA, Health Canada
  and the AIDS Bureau, Ontario Ministry of Health
  and Long Term Care
• A decision was made at this juncture that before
  deciding where to go and what to go next, we
  needed to have a clear picture of the status of
  the HIV/AIDS epidemic within the two populations.

11
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (10)

• Dr. Robert Remis was contracted by the AIDS
  Bureau to provide us with a rough idea or
  estimate of the status of the epidemic within the
  African and Caribbean communities in Ontario,
  resulting in the report he will be presenting
  today.

12
HIV/AIDS in African and Caribbean Communities in
Ontario History of HETF (11)

• When the report was ready many of us were not
  surprised by what it predicated
• Based on the needs of the working, other
  organizations working with African and Caribbean
  communities were invited to join the working
  group after completion of the report - Rexdale
  CHC, CMSC, Youth clinical Services, WHIWH,
  Toronto Public Health
• The name of the working group was changed to what
  its is currently known as the HIV Endemic Task
  Force (HETF).

13
Impacts of the report

• The media including radio, television, and
  newspapers highlighted different aspects of the
  report spinning it in different directions.
• Its positive impacts were overshadowed by the
  negative implications that resulted when the
  mainstream media presented the report.
• The organizations that were part of the working
  group, who knew and understood the context within
  which the report was produced failed to inform
  the communities why it was important to have such
  a report.

14
Negative Impacts (1)

• Portrayal of African and Caribbean Communities in
  negative ways as the reason for the spread of
  HIV/AIDS in Canada.
• Perceived increase in racism and discrimination
  as the larger Canadian population became aware of
  the high rates of infection within these
  communities leading to even more difficulties
  accessing services, employment, housing, etc.

15
Negative Impacts (2)

• Most people were sure that immigration would use
  this report to tighten immigration policy to
  ensure that those who are perceived to be
  infected are kept out of Canada
• Increased silence and denial, creating even more
  challenges for those involved in prevention,
  support and care efforts in African and Caribbean
  Communities.

16
Positive Impacts (1)

• The report become an advocacy tool
• To raise awareness and increase participation of
  community members and service providers -
  profile HIV/AIDS as an issue that should be of
  concern for Caribbean and African communities in
  Ontario and that something needed to be done
  about it.
• Strategizing by different stakeholders
  communities, service providers and the municipal
  and provincial levels of government also begun to
  look at the different strategies of dealing with
  the issue

17
General Awareness raising

• Through media e.g. television, community radio,
  newsletters and newspapers
• Through activities organized by community
  organizations many community based groups
  invited Robert Remis to present the report at
  board and membership meetings, conferences and
  fora.
• Activities were targeted to both the service
  providers working with these communities and the
  community itself

18
Strategizing by different stakeholders

• The report led to the mobilizations of different
  stakeholders in an effort to mount effective
  strategies to deal with the situation. Active
  groups included
• - service providers (1)
• - different levels of government (2)
• - affected communities (3)

19
Service Providers (1)

• More individual organizations started applying
  for grants to provide HIV/AIDS services to
  African and Caribbean populations who were coming
  through their doors.
• With the statistics available funders could no
  longer justify withholding funds from those
  providing services but
• - are the services being provided?
• - and if so are they appropriate, adequate,
  effective and who is evaluating?

20
Strategies of government (2)

• City of Toronto funded
• Individual organizations to carryout prevention
  work
• two HIV/AIDS fora to bring service providers from
  settlement services, AIDS service organizations,
  shelters, social service organizations, public
  health, etc. together in an effort to create an
  effective service delivery model for African and
  Caribbean populations.

21
Provincial Government

• The AIDS Bureau facilitated the continuation of
  the former HIV Endemic Working Group that has
  been renamed the HIV Endemic Task Force
  provision of financial support for the meetings.
• By creating a mechanism that ensures the Ontario
  Advisory Committee on HIV/AIDS is updated on the
  work of the Task Force

22
Task Force Membership

• The previous HIV Endemic Working Group,
  comprising of Black CAP, ACHES, APAA, AIDS
  Bureau, Health Canada Ontario Region, and later
  Womens Health in Womens Hands was renamed the
  HIV Endemic Task Force
• It was expanded to include Youth Clinical
  Services Inc., Rexdale Community Health Centre,
  and the City of Toronto.

23
Goal of the Task Force

• In an effort to promote timely, coordinated and
  adequate response, the task force is in the
  process of developing a strategic plan

24
Goal of the strategic plan

• To reduce the incidence of HIV among people in
  Ontario from HIV endemic countries (e.g.
  communities of African and Caribbean descendants)
  and to improve the quality of life for those
  infected and affected by HIV/AIDS

25
Objectives of the strategic plan (1)

• To coordinate the work of agencies, institutions,
  and policy makers working with and for Endemic
  communities (EC) regarding prevention, education,
  health promotion, care and support
• To facilitate community development in response
  to HIV/AIDS challenges and

26
Objectives of the strategic plan (2)

• To identify research needs, priorities and
  opportunities

27
HIV Endemic Task Force Strategic PlanKey
Principles 1

• 1. HIV infection in HIV-endemic communities is
  urgent
• 2. Provincial and federal policies and programs
  must be integrated and coordinated
• 3. Mechanisms needed to link the policies and
  programs
• 4. Must address the broader determinants of
  health
• 5. Acknowledges that HIV prevention, care,
  treatment and support occur within a continuum of
  program and service delivery
• 6. Promotes the delivery of HIV-related programs
  and services within an integrated comprehensive
  health care approach

28
HIV Endemic Task Force Strategic PlanKey
Principles 2

• 7. Promotes a community-based response that
  recognizes the diversity of HIV-endemic
  communities (HECs)
• 8. Programs and services must involve people
  from the HECs, be culturally competent and be
  accessible to all members of HECs, including
  groups that are often marginalized
• 9. HETF has role in helping to coordinate the
  response among government departments, HIV/AIDS
  Service Organizations, health care and social
  service agencies
• 10. Includes targets and indicators for success
  and evaluation and revision of the Strategy
  according to lessons learned and to the evolution
  of the HIV epidemic.

29
Strategic Directions of the plan (1)

• Advocate for a commitment to and resources to
  implement a province-wide strategy to reduce HIV
  infection among people from EC
• Hold organization accountable for providing
  services to people from EC
• Provide an accountability and coordinating
  mechanism for work with Ecs in Ontario through
  HETF

30
Strategic Directions of the plan (2)

• Identify and promote culturally appropriate and
  accessible HIV prevention, care, treatment and
  support programs and services delivered within a
  framework of comprehensive health and social
  services
• Support capacity building initiatives within EC
  and existing EC organizations to respond to
  HIV/AIDS

31
Strategic Directions of the plan (3)

• Educate/train health care providers in cultural
  competency/cultural sensitivity
• To establish research priorities that promote
  broad based relevant research
• To reduce potential negative impacts of research
  on EC

32
Strategic Directions of the plan (4)

• Promote access and adherence to drug therapies
  and treatments by reducing barriers related to
  culture and/or language
• Break the silence and create a supportive
  environment for prevention work

33
Consultations

• Draft plan has been circulated to different
  stakeholders across Ontario for input
• Targeted focus groups will be held with specific
  groups across Ontario in the next few weeks
• Input from the various sources will be
  incorporated into the plan

34
Other activities Undertaken by the Task Force (1)

• Organizing a community forum to strategize on how
  to deal with HIV/AIDS stigma and denial to
  increase effectiveness of any strategies mounted
  to deal with HIV/AIDS EC
• Community proposed strategies to
• eliminate stigma and denial
• create a comfortable and safe environment for
  those infected and affected by HIV/AIDS
• Increase access to services and information.

35
Activities being Undertaken by the Task Force (2)

• Advocating and Facilitating links with other
  provincial and National stakeholders such as the
  Canadian Strategy on HIV/AIDS.

36
HIV Endemic Task Force Strategic
PlanRecommendations re federal role
1. Develop a dedicated strategy for persons in
Canada from HIV-endemic countries addressing
prevention, care, treatment and support 2.
Ensure the necessary collaboration and
coordination with other federal government
departments and with provincial, territorial and
regional governments and agencies 3. Produce
epidemiologic and demographic data to support
evidence-based policy and program development
with respect to persons in Canada from
HIV-endemic countries 4. Bolster the federal
contribution to research incorporating the
multilayered aspects of this issue, including
epidemiology, community-based research,
behavioural and psychological research 5.
Ensure consultation with groups with broad-based
representation from health and social service
agencies and AIDS Service Organization working
with persons in Canada from HIV-endemic countries