Stop TB Canada at the United Nations multi-stakeholder hearing on TB
On May 8, 2023, stakeholders involved in the fight against tuberculosis (TB) from around the world convened in New York at the United Nations multi-stakeholder hearing in preparation for the High-Level Meeting on TB that is happening on September 22, 2023.
Stop TB Canada’s co-chair, Tina Campbell, participated in the hearing as a panelist, where she represented civil society and affected communities in Canada and called for urgent action in the fight to end TB.
Tina, a registered nurse of Cree ancestry who has been personally affected by TB, spoke to her experiences as a patient, clinician, and Indigenous woman. She centered her address around the colonial history of TB in Canada, highlighting her own family’s devastating experiences with TB.
Tina’s voice was a powerful addition to the panel, as Indigenous communities continue to be disproportionately affected by TB due to ongoing impacts of colonization and the health inequities that have resulted as a consequence.
A copy of Tina’s address can be found below. You can watch the recording of the hearing here.
“It is an honour to be here to share my experience as an Indigenous person in Canada that has been affected by Tuberculosis.
The Canadian Constitution recognizes 3 groups of Indigenous peoples: First Nations, Inuit and Métis.
The current rate of TB for non-indigenous people born in Canada is 0.4 per 100,000 people. Meanwhile, Inuit and First Nations peoples living on-reserve experience rates that are 300 and 40 times higher, respectively.
Indigenous people make up only 5 percent of Canada’s total population but experience the highest rates of TB disease and mortality.
We are disproportionately affected by TB due to ongoing impacts of colonization and various health inequities experienced as a consequence.
Decades of systemic discrimination and segregation with institutions such as TB sanatoria have deprived Indigenous communities of the cultural, social and economic tools needed to advance TB elimination.
TB disease is the biological manifestation of unmet socio ecological needs. Remote and isolated communities face inadequate housing conditions. Transmission risk also increases when exposure happens in poorly ventilated and overcrowded living conditions. Nutritious food and access to safe drinking water are either too costly or unavailable affecting the health of individuals. Many communities are under-resourced to handle health-care demands and scarce access to timely care and services are barriers to TB elimination.
Vulnerable communities around the world will recognize these social determinants and systemic injustices because this is an experience shared by Indigenous people all around the world, and other marginalized populations, including miners, people in prison, migrants and refugees, people who use drugs or those who experience homelessness.
Like others who grew up in Canada, I was not aware that TB was still around. I was 23 years old when I was diagnosed with Latent TB Infection during an occupational health screen. I had no idea where I could have been exposed and knew very little about TB. As I explored more, I started to learn why TB was hardly talked about and how TB was tied so closely with my own family history.
My Kokum (grandmother) was sent to a Fort Qu’Appelle Sanatorium twice in the 1950’s. Here the adults and children were separated and forbidden to interact. My aunt who was under the age of 10 was sent to the same sanatorium during the same time as my kokum. Experiences of abuse, force feeding, experimentation and isolation were shared with me.
When doctors visited communities those with TB were not permitted to collect belongings or say goodbye to family and some were never seen again. For Indigenous peoples this generational grief is still present. Mis-trust and negative feelings of health care and institutions are a result.
It was following my diagnosis with Latent TB that I was coincidentally offered a position at a TB clinic. Throughout these 13 years I’ve seen firsthand the impact the disease and its history has on my communities.
Stigma and neglect impact my daily work. Imagine trying to relay to those in remote and isolated communities the urgency of TB screening, detection and treatment while they can wait weeks or months for services.
In the year 2021 during a global pandemic with most resources and TB staff allocated towards COVID-19, I found myself in the center of coordinating response teams for TB outbreaks within on-reserve First Nations communities. At the height of the pandemic, people with respiratory symptoms were tested for COVID and not TB. As a result, people presented to health centers or emergency rooms at advanced stages of disease and were highly infectious. Clients were waiting a minimum of 3 weeks before they could complete an x-ray and 100 days before receiving any tests for evidence of TB exposure.
Today there are 3 active TB outbreaks in my region and the rate of TB has increased by nearly 300% between 2019 - 2022. As a TB care provider working with vulnerable populations with limited resources I know how devastating just one diagnosis of Active TB can be. In 2022 we had 72 diagnoses in my region. On top of that, half of those were those under the age of 19. Do we not value the lives of these children? Additionally - We identified over 1600 people that required screening or follow up which was completed by nursing team of 4. We NEED help.
Canada and Governments around the world must stop the neglect that leaves so many people - including my people - behind.
Urgent action must be taken to capitalize on the innovations and systems put in place to respond to the pandemic to prevent, diagnose and treat TB. To leave no one behind - all national TB responses must be equitable, inclusive, gender-sensitive, rights based and people-centered. By committing to costed community rights and gender action plans, we can make this a reality.
Sadly, when all attention was focused on COVID-19, TB was forgotten with dire consequences, and even here while in New York and speaking with Missions, I am learning that TB may be left behind again in terms of prioritization alongside other HLMS and UNGA events taking place here in September.
In Canada disruptions to programming and care caused by the pandemic resulted in TB deaths increasing for the first time since 2005. Some of those who didn’t lose their lives to TB were left with lifelong disabilities as a result of delayed diagnosis. We have to remember that COVID-19 was just one event. We have been living with a population-specific burden of disease that is unfair for decades. And, in 2023 with all our resources and advancements nobody should be facing death from a preventable and for more than 70 years, curable disease like TB. No group in this resource rich nation and world should be so unfairly affected.
We must reach all people affected by TB with prevention, diagnosis, treatment and care by implementing evidence-based and quality interventions and tools as per the latest international guidelines. Today I feel this overwhelming and tremendous weight on my shoulders to speak for those most vulnerable to TB disease. I would like to see more people in all vulnerable groups be consulted and considered when making program policies and decisions.
We can not afford to fail any longer. By failing to end TB, governments are failing to uphold the Rights of Indigenous Peoples and to make good on commitments to reconciliation.
With collaboration, commitment, political will and compassion - YES, we can end TB!”