Opinion: ‘How did I get this?’ The extraordinary tuberculosis story of a BC patient

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Nine months ago, Sera was told she had a highly drug-resistant form of tuberculosis (TB) called pre-XDR with very limited treatment options.

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Two months ago, they told him that he was cured.

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He was one of the first people in Canada to complete treatment with a new combination of pills called BPaL. Now her daughter jokingly tells her that she is a celebrity.

Sera’s experience with TB may be extraordinary, but in this World Tuberculosis Day 2023 also highlights the challenges and successes faced in Canada and around the world in the immense effort to end of tuberculosis.

“How did I get this? Where from? I was in denial. I never got sick in my life.”

As a first-generation, middle-aged Canadian South Asian healthcare worker, Sera had only indirectly heard of tuberculosis. Like most Canadians, she didn’t realize how much TB remains a leading cause of death and disability. In fact, globally, TB is now killing more than twice as many people per day as COVID-19.

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After months of coughing and a dramatic drop in weight, Sera sought medical evaluation. At the time, tuberculosis had caused extensive lung damage that was easily seen on a chest X-ray.

“I could not believe it. She knew that tuberculosis was not good.

She had heard of “elderly people (with) TB who had gone to ‘an island’ were separated”.

Subsequent testing confirmed pre-XDR TB. This diagnosis would drastically change her life for the next eight months, including five in which she was required to remain in strict isolation to prevent the spread of tuberculosis to others.

“I was so worried, day and night, about infecting others… First I was worried about my family. We always hug. It was very difficult (to worry about) doing that.”

It often takes months from when a patient gets sick to when a TB diagnosis is made. This is due to the insidious nature of the disease and a lack of awareness. It is estimated that one fifth of the world’s population has been infected with TB. In most people, the immune system either blocks TB within the lungs or clears the infection, preventing it from spreading. However, in five to 10 percent of infected people, the immune system goes out of control and they develop an active and potentially contagious disease.

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The landscape of TB treatment has changed dramatically in recent years. Five years ago, a patient with the Sera TB strain would have required treatment with up to seven drugs for 18 months or more, requiring prolonged isolation and leading to high rates of side effects and treatment failure.

Now all short-acting oral regimens like BPaL are available. Similar advances have been made in the rapid diagnosis and treatment of latent tuberculosis (treatment of infected healthy people to prevent future disease).

In Sera’s case: “The first meds made me vomit. Once I got the right meds (BPaL), I had hope. But he was scared, thinking, ‘What if this doesn’t work?’ ”

When told that she was cured: “I screamed, I was very happy. I got my life back.”

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Sera’s case illustrates how a strong public health system, combined with access to new treatments, can lead to life-altering outcomes and prevent disease transmission.

Her drug-resistant TB was quickly identified and she had access to a dedicated TB Unit at Vancouver General Hospital, where she was able to isolate while being cared for by a team including specialist doctors, pharmacists, nurses and outreach workers.

But these comprehensive services are often not available in the rural and remote areas hardest hit by TB in Canada, such as Baffin Island, Nunavut, where a a large outbreak was declared and continues from 2021.

In Canada, there continues to be an unacceptably high burden of TB among some of our most disadvantaged populations (indigenous, homeless and new immigrants) and annual TB cases in Canada have not decreased in more than 10 years. with more than 1,500 cases a year.

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Globally, in 2021 alone, more than 10 million people fell ill with TB and 1.6 million died. Progress towards the TB eradication goal has been back off severely during COVID-19 and we stayed away WHO 2030 tuberculosis eradication targets. We have the necessary tools, but now we must find the social and political will to prevent people from dying from this preventable and treatable disease.

On this World Tuberculosis Day, we must all call for more resources to be allocated to the fight against this disease. Talk about it with family and friends, promote awareness on social media with #YesWeCanEndTB, and write letters to politicians and community leaders to advocate for more TB programs and research funding. If you are not sure how to take action, Results Canada provides resources to help.

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Reflecting on her experience with TB, Sera shares: “People with TB need to feel strong, think positive. Take action early. We should talk more about tuberculosis. I am a very private person and until now I have only told my family. I didn’t have the courage. Now I’m starting to get it. I feel positive.”

This lived experience is invaluable. In fact, there is much we can all learn from Sera and the many TB survivors in Canada and around the world.

Author’s note: Sera is a pseudonym used at the patient’s request to ensure privacy. Patient-related content in this article was obtained with prior consent and approved prior to publication.

Alex Mezei is an internal medicine physician seeking additional training in tuberculosis medicine at the University of BC. Dr. William Connors is a specialist in infectious diseases and tuberculosis medicine and a clinical assistant professor in the UBC Department of Medicine.

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Letters to the editor should be sent to [email protected]. The editor of the editorial pages is Hardip Johal, who can be reached at [email protected].