Families frustrated by 'wall of silence' on N.B.'s mystery brain disease

Krista Brown was looking forward to moving to her recently purchased New Brunswick retreat near the Acadian Peninsula.

That is until one month ago, when news of a cluster of more than 40 cases of a mystery neurological disease so far found only in New Brunswick in the Acadian Peninsula and Moncton areas was made public via a leaked Public Health memo.

Now Brown, a former Miramichi resident who currently lives in Ontario, says she's having second thoughts.

"The government has provided no answers" to her requests for more information, including about where, specifically, the cases are, she said.

"All of my money is tied up in a house that I'm afraid to move to," Brown said.

Brown is one of a number of people growing increasingly upset with the government's silence on the mystery disease cluster first reported one month ago, when Radio-Canada obtained a memo from Public Health to medical professionals.

"We just want to know what it is" says man of father's mystery illness

3 years ago

Duration 6:10

44 cases and 6 deaths are being linked to a mysterious neurological illness in New Brunswick. For the past two years, Steve Ellis' father, Roger Ellis, has been experiencing all the symptoms that are linked to this rare disease, but has not been diagnosed. A team of doctors was created to help research and identify the rare disease. Steve Ellis hopes this team will be able to diagnose his father and finally give his family some answers.

The March 5 memonoted that 43 cases of the disease had been identified so far,and that five people had died.The case count has since risen to 44 and the death toll to six.

Tests done on the patients have so far ruled outCreutzfeldt-Jakobdisease and other prion diseases, and scientists are looking into the possibility that this is an entirely new disease, possibly caused by an environmental toxin.

To date, Public Health has not provided any public updates, has not held any information sessions in the affected communities or elsewhere, and has not issued any news releases regarding the mystery disease cases. It also has not said where, specifically, any of the cases were identified.

• As toll rises from N.B.'s mystery brain disease, Public Health pledges 'regular updates'

Almost two weeks ago, on April 7, the department acknowledged residents'"confusion and concern" andpledged to provide regular updates "in the coming weeks" via a website that was being developed.

However, that website has yet to appear, and several CBC News requests for information regarding when it might go live, and what sort of information it will provide, were not responded to.

On Tuesday afternoon, Public Health said the webpage is "days away" from going live but did not provide details about its content.

"We are awaiting comments from the CJD Surveillance System,"spokesperson Bruce Macfarlane said in an email, referring to the federal Public Health Agency team that isprovidingsupport to New Brunswick's own investigation of the cluster.

"It's been a month since the government has said anything new about this, and the wall of silence is unbearable," said Steve Ellis, whose father is one of the 44 cases being investigated by the team leading New Brunswick's research.

Joanne Graves, whose mother is also one of the cases being investigated by the New Brunswick research team, led by Moncton neurologist Dr. Alier Marrero, agrees.

Graves said she is infuriated by Public Health's lack of transparency on the issue and by the fact that itdid not disclose the cluster until after the memo was leaked.

"They have done nothing," she said.

Graves said the day the news was reported one month ago, on March 17,Marrerosaid Public Health would be contacting her to collect information, with her mother's permission.

"She said 'Of course,' " Graves said. "Nobody has contacted her yet."

Clear communication vital during public health crises

Transparency advocate Michael Karanicolashas noticed a general trend, both in Canada and around the world, regarding governments' handling of public health crises, particularly the COVID-19 crisis.

With thatcrisis, for example, many government authorities have reacted "by trying to controlthe spread of information and limit the availability" of information.

"And that is precisely the wrong approach if you are looking to communicate effectively to the public," Karanicolas said.

New Brunswick Public Health authorities have been accused by some of adopting this approach as they wrestle with not one but two health crises simultaneously: a COVID-19 pandemic and the mystery neurological disease cluster.

• How much should the public know about COVID-19 cases? It depends who you ask

For Karanicolas, the communicationsapproach to both should be the same.

If the COVID-19 crisis has taught us anything, he said, it isthat clear communication to the public must be prioritized.

"Transparent communication is of paramount importance during a public health crisis," Karanicolas said.

"Not only because authorities have a responsibility to be accountable but also because the absence of clear communication from those in charge invites rumour and misinformation to spread."

Karanicolas, who has been president of the Right to Know Coalition of Nova Scotia since 2013 and has just been madeexecutive director of the Institutefor Technology Law and Policy at UCLA Law School, said the urge to limit information can be rooted in the desire to prevent alarm.

The absence of clear communication from those in charge invites rumour and misinformation to spread.- Michael Karanicolas, transparency advocate

"Even saying 'Here's what we have, but this conclusion would be premature so don't jump to this conclusion' that is still a better and more effective avenue than for the government to just say nothing," Karanicolas said.

Liberals MLAs are pushing for just this sort of change incommunication tactics.

In an email Monday, Opposition communications director Ashley Beaudin said the Liberal caucus has received inquiries from worried New Brunswickers who want to know when the promised website will be set up and when information will bemade available.

MLAs will be calling on government to "make this a priority," Beaudin said.

"While we understand that health officials may be reluctant to provide more detailed information that might create speculation as to the cause, or panic amongst the population, they have to realize that people are very concerned and want the government to be as open and transparent as possible," she said.

"If there is a compelling reason for limiting information, then government needs to explain it to the people."

N.B.'s mystery disease: What we know so far

What is it?

An unknown neurological disease withsimilarities toCreutzfeldt-Jakob disease, a rare and fatal brain disease, or prion disease.

What's a prion disease?

A prion disease is a raredisease that pertains to a misfolded protein in the brain. The abnormal folding of the prion proteins provokesa chain reaction that destroys neurons and creates holes in the brain.

When was it discovered?

The first occurrence was retroactively found to have occurred in2015,when the possible existence of a cluster of disease was first recognized by the CJD Surveillance System at the Public Health Agency of Canada in 2020.In 2019, 11 additional cases were identified, with 24 morein 2020 and seven so far in 2021.

When was it made public?

A March 5 internal memo from Public Health to health-care professionals was obtained by Radio-Canada and reported by Radio-Canada and CBC News onMarch 17.

Where are the cases?

The disease has so far only been identified in New Brunswick.It appears to be concentrated on the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast.

How many cases are there?

Forty-four cases have been identified. Of those, Public Health has said 35 are on the Acadian Peninsula and eight are in the Moncton region. The location of the 44th case has not been revealed.

How many patients have died?

Six people have died of the mystery disease, according to neurologist Dr. Alier Marrero. The six are included in the 44 cases so far.

Who has been affected?

The disease affects all age groups and affects males and females equally, according to the Public Health memo. About half of theaffected individuals are between 50 and 69 years of age.

What are the symptoms?

Symptoms include changes in behaviour, sleep disturbances, unexplained pain, visual hallucinations, co-ordination problems and severe muscle and brain atrophy.

Is it contagious?

Because the cause has not been determined, it is not yet known whether the disease is contagious.

What are the possible causes being researched?

Despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases. Scientists are currently looking into the possibility that this is a new variant of a prion disease or a new disease entirely. Neurologists and scientists suspect the cause might be exposure to an as-yet-undetermined environmental toxin.

Who's researching it?

The disease is the subject of investigation by an all-Canadian team of neurologists, epidemiologists, scientists, researchers and other experts. Moncton neurologist Dr. Alier Marrero is leading the research in New Brunswick. In Ottawa, senior scientist and Creutzfeldt-Jakob Disease Surveillance System director Michael Coulthart is leading the research.