Inuit babies 'don't have a lobby': Doctor petitions to expand use of antibody against respiratory virus

The Nunavut government could prevent "needless hospitalizations and deaths" of Inuit infants by expanding the use of an antibody that protects against a highly contagious respiratory virus, according to a petition based on research by a Toronto pediatrician.

Dr. Anna Banerji, an infectious disease specialist and associate professor at the University of Toronto's faculty of medicine, told White Coat, Black Art that providing palivizumab to all Inuit babies could reduce complications from respiratory syncytial virus (RSV), a common virus that infects the respiratory tract and can manifest with cold-like symptoms.

"We continue to have a two-tier system that doesn't value Indigenous lives and the Inuit babies, they don't have a lobby," said Banerji, who has spent 25 years doing research with Indigenous populations in Canada's Arctic.

"I don't know if Inuit mothers in the northern communities even know that there's an antibody out there that could have prevented most of the RSV infections." 

RSV can affect anyone, but is most serious in young babies, especially those with congenital heart or chronic lung disease.

According to Banerji, Inuit infants have "very elevated" rates of RSV. 

In a 2009 study, Banerji found infants in Baffin Island communities faced a higher risk of complications from RSV, exacerbated by living in remote communities, overcrowding, smoking during pregnancy as well as genetic factors. Her research found almost one-third of infants were hospitalized with lower respiratory tract infections, which are most often caused by RSV.

Nunavut's chief medical officer acknowledges the petition is "coming from a place of concern … and we do share that," says Michael Patterson. But there isn't enough evidence the antibody "prevents mortality from RSV or from bronchiolitis [lung infection that can result from RSV]."

Currently, the territory only gives palivizumab to children with high-risk conditions, such as those born prematurely or with chronic heart or lung conditions. It's the same policy for most of Canada, with the exception of the Quebec region of Nunavik.

Cost of treatment

Palivizumab — marketed under the brand name Synagis — costs between $5,000 and $9,000 per infant per year. It requires up to five monthly doses administered over the RSV season, which generally lasts from November to April in Canada.

It would be cheaper to give palivizumab to every Inuit baby in remote communities rather than pay for medevac and hospital costs if those children get sick, according to Banerji.

Between January and June, there were approximately 80 lab-confirmed RSV cases, up from 70 in total in 2018, according to Nunavut's department of health.

From 2015 to 2017, the territory saw an average of 50 confirmed cases.

It's a concern about whether or not it really is effective at reducing hospitalizations- Michael Patterson, Nunavut's chief medical officer of health

These figures do not cover the clinical diagnosis of bronchiolitis, which can be caused by RSV, the department noted. 

Banerji estimates it would cost about $3 million per year to provide the antibody to every baby in Nunavut — an extrapolation of calculations based on $7,000 for palivizumab treatment per infant in Nunavut. 

But Patterson says it's not just about costs.

"It's a concern about whether or not it really is effective at reducing hospitalizations … if we had conclusive evidence that we could save money by administering palivizumab, we would adopt it."

A 2017 Public Health Agency of Canada review of all RSV infections between 2011 and 2016 found the average cost was $11,385 per case, 45 per cent of which accounted for medical travel, Nunavut's department of health told White Coat, Black Art.

At the time, the review recommended the Nunavut government "maintain the status quo" of its palivizumab program, noting further study was needed.

Debate over palivizumab use

In most of the country, palivizumab is administered to premature babies and those with an underlying heart or lung condition.

But in 2016, the Inuit region of Nunavik in northern Quebec expanded its program to all newborns as part of a four-year study. A report is expected in 2020.

But the case for and against the universal administration of palivizumab continues to evolve.

In outlining its position on offering palivizumab to full-term Inuit infants, the Canadian Paediatric Society stated in 2018 that other measures such as improved housing, prevention of exposure to smoke, and optimal use of influenza and other vaccines would be more cost-effective than palivizumab in the long term.

How do we make it achievable so that all these babies can get what they need to grow up healthy.- Dr. Anna Banerji

The statement added that "consideration may be given to administering palivizumab during RSV season to term Inuit infants until they reach six months of age only if they live in communities with documented persistent high rates of RSV hospitalization." 

But premature babies or those with chronic lung disease or coronary heart disease should remain the priority, the statement said.

Back in Toronto, the petition — born out of Banerji's speech to her fellow alumni at University of Toronto's 1989 faculty of medicine — has collected almost 25,000 signatures to date, including the Ontario Medical Association, Canadian Medical Association and the Institute of Indigenous Peoples' Health.

Kowesa Etitiq, who backs the petition, says while living in Iqaluit in the late '90s, his then two-year-old daughter was hospitalized with an RSV infection.

"It was very scary because I did not understand what she was going through."

He says providing all Inuit infants in rural areas with palivizumab "should be a no-brainer." 

For Banerji, it's also personal. Her adopted Inuit son, 14-year-old Nathan, died by suicide in 2018. Banerji says her son had several bouts of bronchiolitis and was "quite sick." She's not sure if he had RSV since he wasn't tested for it.

If the petition brings change, Banerji sees it as a "validation" of her work.

"They can't not listen anymore. We need to strive for health equity and this is an easy fix." 

She says the petition's group of doctors are willing to work with the territory's government.

"The point is how do we make it achievable so that all these babies can get what they need to grow up healthy."

Written by Ruby Buiza. Produced by Sujata Berry