Report of The Global Indigenous Stop TB (GISI) working

group.

This working group focuses on improving the health of Indigenous

peoples globally with a focus on TB.

The Union – 50th World Conference on Lung Health, Hyderabad, India

Global Indigenous Stop TB Initiative (GISI) Working Group Meeting

Organizers: Wendy Wobeser (Chair, in absentia), Pam Orr, Nagma Grewal, C. Andrew
Basham

Participants: as listed in sign-up sheet (appended)

Oct 31, 2019; 5:45-7:15pm; MR.G.03-0.4

1. Introductions

Countries of participants: Nigeria, Venezuela, Canada, UK

2. Summary of member activities in 2019
a. Nigeria
i. Pilot project with Nomads, part of the national strategic plan
b. Canada
i. Creation of a public document on Ethics of TB Research and Care –
an Indigenous Approach
ii. Sharing Circle at the Union – North American Region (NAR) End TB
Meeting, Vancouver, Canada
iii. Dr. Wendy Wobeser’s interview with Kingston, Ontario news station
on World TB Day
iv. Member publications:
1. Proximate determinants of tuberculosis in Indigenous
peoples worldwide: a systematic review. Lancet Glob Health.
2019 Jan
2. The potential impact and cost-effectiveness of tobacco
reduction strategies for tuberculosis prevention in Canadian
Inuit communities BMC Medicine 2019
3. Tuberculosis among northern Manitoba First Nations, 2008–
2012: program performance on- and off-reserve. Can J Public
Health. 2019 Jul
4. Tuberculosis elimination in Canada. The Lancet. 2019 Jul

3. Overview of Community Connect Session

Global Indigenous Stop TB Initiative Annual Report 1

 • “A voice for Indigenous Peoples is critical if we are to end TB for all”
• With the support of the Stop TB Partnership and REACH India, invited three
tribal peoples from Jharkhand, India to have an inclusive discussion around
Indigenous TB, with a focus on Indigenous peoples of India
o Discuss their experiences and the lived realities of high-level
commitments
o Strategizing on steps (and people) required to create a position
statement and plans to reduce TB in Indigenous populations à
potential for a global summit
o Modelling the process on International Indigenous Working Group
on HIV and AIDS

4. Priorities and future directions for GISI
a. Webinars
Attendees noted webinars would be a useful tool to connect working group
members and showcase work being done around the global to address
Indigenous TB.


Important factors to consider:
- Can only Union members participate/join in? Can we open this up
more broadly?
- How do we ensure Indigenous and tribal peoples are in a position
to access and participate in these activities?

There was a discussion on inviting Mariam Wallet Aboubakrine to speak
about her study presented to the Permanent Forum on Indigenous Issues in
May 2019 as the first webinar topic. The report can be found at:
https://www.un.org/en/ga/search/view_doc.asp?symbol=E/C.19/2019/9

b. Commentary in the grey journal
The piece would provide a general overview of TB amongst Indigenous
populations worldwide, introduce GISI and its work, and then end with a call
to action outlining the need to fund a global summit to give Indigenous
voices a platform to define their TB priorities.

c. Increased visibility
GISI needs to reach people who are working with Indigenous peoples
around the world. This can be difficult to do by word of mouth or email
alone. GISI will work towards creating a webpage for the working group
which will be hosted by The Union. In this manner, there will be no costs
associated with maintaining a domain, the webpages will be professionally
designed and consistently updated/maintained.

d. Consistent communication amongst members
GlSI outlook mailing list versus the Union listserv – future work will be done
to amalgamate and update the two lists.

Global Indigenous Stop TB Initiative Annual Report 2

 Conference calls 2-3 times a year amongst working group members might be
helpful to ensure ongoing action.

e. Work towards a symposium for Seville 2020
GISI did not have the funding for one this year but it may be more feasible to
bring people to Seville. Attendees noted there was more Indigenous
engagement at the Hague meeting, thus is a good example for future Union
meetings.

5. Other Notes
a. Collaboration with Zoonotic TB Working Group may be beneficial. Many
Indigenous farmers/herders. Past zTB WG Chair (from Mexico, but lives in
Ontario), current zTB Chair in Nigeria working with Indigenous people on M.
bovis.
b. Centralization versus regionalization / decentralization. Should there be
local groups that build up to the global? Perhaps there should be Union
Regional Indigenous Stop TB Initiative Working Groups.
c. Partnerships with healthcare leadership of a country supported by the
Global Fund (i.e. Bolivia – Evo Morales, Nigeria, Guatemala – has strong HIV
indigenous group) could provide funds for initiatives.





Appendix 1 – Attendance Sheet

Name Email Country
Nagma Grewal n.grewal@queensu.ca Canada
Pamela Orr porr@hsc.mb.ca Canada
C. Andrew Basham umbashac@myumanitoba.ca Canada
Kevin Schwartzman kevin.schwartzman@mcgill.ca Canada
Stephen John wizemannstv2@gmail.com Nigeria
Suraj Abdulkarim surajkwami@yahoo.ca.uk Nigeria
Julian Villalba julian.villalba@mgh.harvard.edu Venezuela
Madlen Nash madlen.nash@mail.mcgill.ca Canada
Paul Nunn nunnpp@gmail.com UK
Meenu Sharma meenu.sharma@mymts.net Canada
Leo Ruhl laruhl@sfu.ca Canada





A voice for Indigenous peoples is critical if we are to end TB for all

Global Indigenous Stop TB Initiative Annual Report 3

 GISI’s Community Connect session at the 50th Union World Conference on Lung Health
Hyderabad, India
November 2, 2019

There are approximately 370 million Indigenous peoples around the world, representing about
5% of the world’s population. Scientific evidence from across the globe indicates Indigenous
populations carry a disproportionately higher burden of tuberculosis (TB) than their non-
Indigenous counterparts. Oftentimes, a plethora of social determinants of health, such as
inadequate housing, poverty, and limited access to health services, contribute to Indigenous
peoples’ increased vulnerability of contracting TB.

In recent years, many international bodies, such as the World Health Organization and the United
Nations General Assembly, have devised strategic plans and political statements to end the global
TB epidemic. The works are grounded in the principles of government stewardship and
accountability, strong coalition with civil society organizations and communities, protection and
promotion of human rights, ethics and equity, and adaptation of strategies and targets at a country
level. However, many of these frameworks do
not include concrete calls to action for countries
to address the TB priorities specific to
Indigenous peoples.

With the support of the Stop TB Partnership and

REACH India, the Global Indigenous Stop TB
Initiative (GISI) engaged three tribal peoples
from Jharkhand, a state in eastern India, in an
organic discussion on their experiences with TB.
The participants included, Sukhlal Ganju, the
president of a local NGO, “Tribal Kalyan
Kednra”, Sabina Tudu, the secretary of the same
NGO, and Simon Kisko, a TB survivor and
community volunteer and advocate.

The experiences shared by the trio echo the Tribal participants (front from left to right) Sukhlal Ganju, Sabina
stories and priorities identified by other Tudu and Simon Kisko, along with members from the audience.
Indigenous groups globally. The session
included an interactive component with audience members having the opportunity to share the
issues they felt should be at the forefront when addressing Indigenous TB. Taken together, five
key priority areas emerged.

1) Education and awareness for communities and healthcare providers

The tribal peoples identified language as being a key barrier to learning more about TB.
Information, both written and verbal, should be available in tribal languages. Local
jurisdictions can explore working with communities to tailor communications to the local
peoples, such as incorporating radio messages along with pamphlets, to increase
inclusion.

From the healthcare prospective, the trio touched on the continued discrimination faced
by tribal peoples when interacting with healthcare providers. They indicated Directly
Observed Therapy (DOT) workers should be from the community. States and
jurisdictions need to provide the infrastructure and support to recruit and train local

Global Indigenous Stop TB Initiative Annual Report 4

 community health workers, as well as provide intercultural training to non-Indigenous
healthcare staff working closely with tribal communities.

2) Access
Oftentimes, tribal peoples reside in remote areas while most healthcare facilities are in
urban centres. This requires the physical dislocation and separation of Indigenous peoples
from their communities and families to these urban centres, which are often ill-equipped
to provide the adequate physical and emotional supports to tribal peoples. Greater
consideration needs to be given to creating infrastructure for TB care within
communities instead. For example, mobile TB clinics have been shown to be successful
in many different settings.

Availability does not necessarily indicate accessibility – it is important to consider how

barriers can still limit the active participation of tribal peoples within the healthcare
system in instances where the facilities might be in the community. This can include
financial constraints or distrust between the community and the health centre staff.

3) Incorporating the provision of ancillary services into TB programing

The importance of providing tribal belts with access to nutritional programs and
assistance, mental health resources and addictions services was highlighted by the tribal
participants and audience members. If state departments and local organizations already
provide some of these services, this could be an important avenue to engage these
stakeholders and embed TB awareness and programming into their existing service
models.

The tribal participants also indicated the need to address the social determinants of health,
specifically illiteracy and employment, when planning TB programming.

4) Active engagement and involvement of Indigenous peoples in TB policy and

program planning is crucial
The tribal peoples indicated, that prior to this event, they had never been asked to
participate in discussions around TB. This lack of inclusion and participation of
Indigenous peoples in health system planning and care delivery has led to models of care
which do not incorporate the Indigenous concepts of health and well-being. Further, these
models are often unsuccessful and can isolate and discriminate against Indigenous
peoples, leading to the continued persistence of TB in Indigenous communities. By
actively engaging and including Indigenous peoples in all stages of health programming,
from inception to evaluation, we can ensure the programs will be unique to each
community and better representative of the values of the individuals who will be using
the services.

5) A global Indigenous TB summit

A number of members from the audience identified the importance of Indigenous peoples
from across the globe coming together to share their experiences about TB and also to
learn about what different groups are doing to mitigate gaps and reduce the TB burden
within their communities. Sukhlal, Sabina and Simon were supportive of this idea and
indicated they would be interested in joining such a global conversation.

Global Indigenous Stop TB Initiative Annual Report 5

Indigenous communities have been largely absent from the response to TB globally although it is
widely recognized that the active participation of key populations in the development and
delivery of services and the provision of TB care in safe and respectful environments is key to
success. It is crucial that Indigenous peoples are involved at all levels of policy and intervention
design if we are to meet the global TB elimination goals.

We would like to thank the Stop TB Partnership for providing support for travel and
accommodations for the tribal peoples, as well as James Malar (Stop TB Partnership), Faiz
Anwar (REACH India) and Subrat Mohanty (The Union) for their help in planning the session.

Global Indigenous Stop TB Initiative Annual Report 6

 Action items from 2018 meeting – status update

1. Take TB to UNPFII and /or Geneva, and or IAS conference in Mexico and or HIV AIDS
in SF: Trevor Stratton, Massimo Gherilli (PAHO), Carmen Lopez volunteered for
anything, but special interest in a meeting in Mexico
a. Wobeser and Stratton presented in a PAHO sponsored session at IAS in
Mexico
2. Create a paper, call to action, central issues and ways of working; Farhang Tahib,
Carrie Bourassa, Anne Fanning
a. In progress
3. Indigenous TB Desk
a. Continues under discussion
4. Symposium for Hyderabad, 2019, Stephen John
a. Community connect space event – possibly move to symposium to Seville
5. More formal organizational structure
a. Under discussion
6. Link to Indigenous in India, Nevin Wilson and Trevor Stratton
a. Community connect space in Hyderabad (see below)
7. Paper on Indigenous TB in the Latin region, Mirtha del Granada
a. Needs follow up
8. Create a way of sharing publications by GISI members
a. Needs follow up
9. Consider seeking volunteers for the meeting in Hyderabad from the Indigenous
communities – this is being pursued by Wendy Wobeser, Ronja Baatz (a youth
volunteer from The Hague meeting) and Trevor Stratton
a. See community connect event

Global Indigenous Stop TB Initiative Annual Report 7