Canada’s simmering tuberculosis (TB) outbreak in northern communities is likely much worse than suspected.

A report newly obtained through an access-to-information (ATI) request reveals that the incidence rate of TB among Nunavut’s infants (under one year of age) was 1,020 cases per 100,000 people in 2017 — a shockingly high level.

In the rest of Canada, the rate is just three infants per 100,000.

Worse, the actual rate may be higher than the report indicates, as it drew only on data from the first nine months of 2017. An additional 21 cases of TB (in people of unknown ages) were identified before the year ended. Many important data points were never collected.

Despite these concerning numbers, Minister of Health Ginette Petipas Taylor, Minister of Indigenous Services Jane Philpott and Inuit Tapiriit Kanatami (ITK) president Natan Obed recently announced the ambitious goal of eliminating TB from Canada’s North by 2030.

While it is commendable to see political will and $27.5 million over five years supporting TB elimination, similar announcements for TB reduction were made by federal ministers of health in 1997 and 2006. These targets were not met.

The main hope arising from the latest plan is that ITK, a non-profit organization advancing the rights and interests of Inuit in Canada, is leading the process for the first time.

Hard to diagnose in babies

I work as a family and emergency room doctor in the Northwest Territories. I also have a diploma in tropical medicine and hygiene and I do work with Doctors without Borders.

I have seen the devastation that TB reaps. I am concerned by the high incidence rate of TB in Nunavut’s babies. The poor data we have indicate that TB is a bigger problem than the current numbers reveal.

Eliminating TB in the North in just 12 years may be harder than many imagine.

THE CANADIAN PRESS/Sean Kilpatrick

While most people think of TB as a bacterial disease of the lungs found in resource-poor countries, it can also present virtually anywhere in the body, especially in infants.

TB is particularly hard to diagnose in babies because the symptoms — of poor weight gain, lack of playfulness and fever — are not very specific.

In general, only affluent countries with excellent health care can definitely diagnose babies through technical and expensive tests and, even then, many cases are missed.

It is difficult to know the true extent of tuberculosis in babies throughout the world, but it is patently unacceptable for one in 100 babies in Nunavut to have active TB.

A legacy of fear and stigma

Tuberculosis has been present in the area now known as Nunavut for more than 100 years but it has not always been so prevalent. As recently as 1997, the incidence was 31 cases per 100,000.

TB has once again become an everyday reality for the people of Nunavut — due to the Public Health Agency of Canada’s premature closure of TB control programs like the Canadian Tuberculosis Committee and its Aboriginal Scientific Tuberculosis Subcommittee in 2011, the dramatic under-funding of Indigenous health care, poor social determinants of health and a lack of human resources in the health-care field.

The historical context of the treatment of Inuit with suspected TB cannot be understated. During the 1940s through the 1960s, thousands of Inuit people thought to have TB were taken from their villages and sent to sanitoriums in places like Hamilton, Ont.

Most never had a chance to say goodbye to their families and many never returned.

A legacy of fear and the stigma of a communicable disease in small towns continues to deter people from seeking medical help today.

Lifelong cognitive impairment

A person exposed to Mycobacterium tuberculosis bacteria will usually not develop the disease. Some, however, will only partially fight off infection and will develop latent TB. Of those with latent TB, five to 10 per cent will go on to develop symptoms of the disease, or active TB.

Those with weakened immune systems and babies are at heightened risk of developing active TB.

Active TB is a potentially deadly infection and, if in the lungs, is contagious. People exposed to the disease can receive preventative treatment to decrease their risk of developing it.

Though infants in Nunavut receive a TB vaccine at birth, it is not entirely protective.

The high incidence rate of TB among Nunavut’s infants is especially worrisome given that Nunavut has the highest fertility rate in the country, with women giving birth to an average of 2.9 children, compared to the Canadian average of 1.6 children.

This means many more infants are in danger.

THE CANADIAN PRESS/Sean Kilpatrick

While Nunavut did not report any infant deaths in 2017, the consequences of even a successfully treated TB infection can include a host of problems, including lifelong cognitive impairment.

Since babies exposed to TB tend to develop active disease faster than adults, infant TB is a sign that the disease is circulating in the community.

The true crux of Nunavut’s TB problem, as shown by the documents I obtained through the Public Health Agency of Canada (PHAC), is that poor data quality and a lack of data showing preventative treatment measures means that nobody fully knows the extent of the outbreak.

TB monitoring failures

I sent ATI requests to the Ministry of Health in Nunavut, Health Canada and PHAC asking how many people in Nunavut were offered prophylactic treatment after being exposed to TB, how many received it and how many completed it.

Ron Wassink, a communications specialist for the Nunavut Department of Health. said that no statistics for prophylactic treatment are available because: “The database is still under development and as such is not ready to create summary statistics nor would it be appropriate to do so at this time until the database is fully operational.”

(Health and Welfare Canada / Library and Archives Canada)

Prophylactic treatment can prevent people from developing latent TB, the not-yet-contagious precursor to active TB. Knowing the number of people offered prophylactic treatment, a treatment that is recommended by the World Health Organization but is not mandatory, gives researchers a true grasp of the amount of disease circulating in a community.

The data that do exist about the outbreak, as shown in the PHAC report I accessed, are frighteningly incomplete.

The report explains that each community in Nunavut should have been keeping a separate Excel spreadsheet for active cases and contacts and importing them into a database. However, some Nunavut communities were left out of this process because their records were “in a format not conducive for data import.”

Even now, in 2018, there is no adequate database for TB monitoring.

Incidence rates out of control

Each active case of TB requires contact investigation. This helps health officials find people who are at risk of developing and spreading the disease.

Contacts, which include people living in the same house, should be offered prophylactic treatment if they qualify for it, or they should receive follow-up monitoring for two years to check for symptoms.

The report shows that local health care workers failed to list the contact type in 42.4 per cent of investigations. This is assigned based on how much time the patient spent with their family member, spouse or perhaps a friend staying in their home.

The categorization of contact type is vital for determining whether a person should be treated.

While the federal government’s funding announcement and strategy are important steps in the right direction, the PHAC report shows that the current data are of poor quality and that the incidence rate of TB in Nunavut’s most vulnerable population is out of control.

With the hiring of more staff, a more culturally sensitive program and better quality data, it is entirely likely that the number of cases of TB detected will actually increase before they decrease because of better detection.

Until we can accurately quantify the scope of the current problem, it is very difficult to foresee an end to the current TB outbreak.