Canadian Institutes of Health Research (CIHR) – The Pathways to Health Equity for Indigenous Peoples initiative

Implementing the “Patients’ Charter of Tuberculosis Care“ In High-Incidence communities across jurisdictional borders

The Pathways TB Project

Persistent tuberculosis (TB) – a disease of poverty – in select Indigenous communities across Canada is a scourge (1). The cause of TB’s persistence is multifactorial and includes systemic neglect, ignorance, and imposition of multiple forms of exclusion, and segregation (2-5). The high burden of disease, relative to that in non-Indigenous Canadians is long-standing (6). 

The Implementing the Patients’ Charter for Tuberculosis Care in High-Incidence Communities and Across Jurisdictional Borders (Pathways TB Project) is funded by the CIHR (7). The Pathways TB Project encourages researchers, Indigenous community partners, practitioners, and government stakeholders to work together to build the evidence base to support policy and program development and decision-making in health and other sectors as they relate to TB (8).

The Pathways TB Project was co-developed by settler scholars and Indigenous peoples. This design ensures a continuing commitment to one another. The project supports communities to play a new role in TB prevention and care activities, respecting their rights and knowledge as outlined in the Patients’ Charter, the UN Declaration on the Rights of Indigenous Peoples, and the report of The Truth and Reconciliation Commission.

Key objectives

Create an Ethical Space

Establish a coalition of community members and government in an ethical, equitable, and sovereign space.

Establish Bi-Directional Public Health Surveillance

Create community requested region-specific surveillance and translate surveillance data back to communities.

Outreach and Community Wellness

Facilitate locally delivered outreach programs for community wellness, with respect to local culture and Indigenous way of knowing and being.

Communication across Jurisdictions

Develop lines of communication across Pathways communities and health regions (Alberta, Saskatchewan, Manitoba and Nunavut).

Action

Pathways is three component project to define the mobile and contextual realities of people in a high-TB incidence region, and to advocate, support and provide better support.

We developed a regional coalition (Component 1) to advocate for better population and community health supports across community and provincial borders. The regional coalition joins communities in Alberta and Saskatchewan with expansion to communities in Manitoba and Nunavut (Component 3).

This coalition has since been working together to promote the strengths of communities, in addition to determining community-level interventions that will ultimately help reduce TB transmission and progression to disease within these regions.

Following the relationship-building phase, we worked with our regional coalition members in Component 2 to develop TB programming efforts with and by Indigenous peoples in their own communities.

These two local-level interventions include:
1) Region-specific surveillance and translation of those surveillance data back to the community.
2) Expanded program of outreach primarily focused on community wellness.

Component 3 expands equitable reach and access for the Pathways project into new communities.

Component 1

Creation of an Ethical Space Relationship-building and formation of regional coalition joining four communities together (two in Alberta and two in Saskatchewan).

Component 2

Bi-Directional Surveillance and Community Wellness: Implementation of two local-level interventions:
1) Region-specific surveillance and translation of those surveillance data back to the community.
2) Expanded program of outreach primarily focused on community wellness.

Component 3

Expanding equitable reach and access: In Component 3 we will expand the equitable reach, access and sustainability of our project. Over five years we aim to transpose the idea of a community/government/program coalition for public health, and the space it provides community participation in decision-making processes for TB elimination efforts, to two additional regions (Nunavut and Manitoba).

Background and Rationale

For as long as TB case rates have been measured in Canada, they have been higher in Indigenous than non-Indigenous Peoples. This is especially true for First Nations Peoples living on-reserve. In absolute numbers there are now more cases of TB in Indigenous Peoples, who comprise only 5% of the Canadian-born population, than in the the non-Indigenous Canadians population (6).

Moreover, the Prairies are a remarkable focality of the disease with 84% of pulmonary or potentially infectious TB cases among Indigenous Peoples occurring north of the 53rd parallel (6).

TB among the Inuit is a public health crisis, contributing to an overall, territorial and population specific rate of 205.8/100,000 persons in 2017. This is 411.6-fold higher than the Canadian born non-Indigenous rate. In 2017, over 80% (253/313) of all reported cases of TB in Indigenous peoples in Canada were from the Prairie Provinces and Nunavut (1).

In addition, we identified molecularly-linked cases on the Prairies often occur within the boundaries of areas defined by treaty rather than within the colonially defined borders of any one Province (6).

Although TB occurs focally, within certain communities described as “high-incidence,” these communities may be better understood as a cluster, where historical, geographical, cultural, and kinship ties between community members link individual communities together in a region. Despite the imposition of the Indian Act and the numerous ways it intrudes upon Indigenous ways of life, Indigenous people in Canada maintain kin relationships and travel between communities, across Indian Act jurisdictions, and occupy multiple fluid population group categories (i.e., definitions of who is Indian and who is not).

Eliminating TB in these regional clusters is becoming increasingly difficult given both the entrenchment of the Indian Act legislation in government and because the provision of services is defined by other jurisdictional and geographical boundaries that are not based on the mobile realities of the people to whom programming and services relate. We propose that eliminating TB cannot be met in isolation. Instead, TB elimination requires the interests of the region and the people considered and promoted.
 

References
  1. LaFreniere M, Hussain H, He N, McGuire M. Tuberculosis in Canada: 2017. Can Commun Dis Rep Releve Mal Transm Au Can. 2019 Feb 7;45(2–3):67–74.
  1. Farmer PE, Nizeye B, Stulac S, Keshavjee S. Structural violence and clinical medicine. PLoS Med. 2006 Oct;3(10):e449.
  1. Galtung J. Violence, Peace and Peace Research. J Peace Res. 1969;6(3):167–91.
  1. Lönnroth K, Jaramillo E, Williams BG, Dye C, Raviglione M. Drivers of tuberculosis epidemics: the role of risk factors and social determinants. Soc Sci Med 1982. 2009 Jun;68(12):2240–6.
  1. Patel S, Paulsen C, Heffernan C, Saunders D, Sharma M, King M, et al. Tuberculosis transmission in the Indigenous peoples of the Canadian prairies. PloS One. 2017;12(11):e0188189.
  1. Long R, Hoeppner V, Orr P, Ainslie M, King M, Abonyi S, et al. Marked disparity in the epidemiology of tuberculosis among Aboriginal peoples on the Canadian prairies: the challenges and opportunities. Can Respir J. 2013 Aug;20(4):223–30.
  1. CIHR. Pathways to Health Equity for Aboriginal Peoples [Internet]. Canadian Institutes of Health Research; 2018 [cited 2019 Jul 15]. Available from: https://cihr-irsc.gc.ca/e/43630.html
  1. Long R, Heffernan C, Cardinal-Grant M, Lynn A, Sparling L, Piche D, et al. Two Row Wampum, Human Rights, and the Elimination of Tuberculosis from High-Incidence Indigenous Communities. Health Hum Rights. 2019 Jun;21(1):253–65.

Funding and partners

Get in touch

Address

3rd Floor, 8334A Aberhart Centre
11402 University Avenue, NW
Edmonton, AB T6G 2J3

Phone Number

(780) 407-1427

Fax

(780) 407-1429

Email

tbperu@ualberta.ca