New committee to review cases of mystery brain disease in N.B.

·5 min read
Health Minister Dorothy Shephard says the public will no longer be told what parts  of the province have seen cases of the neurological disease. (Government of New Brunswick - image credit)
Health Minister Dorothy Shephard says the public will no longer be told what parts of the province have seen cases of the neurological disease. (Government of New Brunswick - image credit)

The New Brunswick government has created a nine-person oversight committee to help investigate the cause of a mystery neurological illness that has sickened at least 48 people and taken six lives.

The committee is chaired by Dr. Natalie Banville and Dr. Edouard Hendriks, from the Vitalité Health Network and Horizon Health Network, and includes six neurologists and one person from Public Health, Health Minister Dorothy Shephard announced on Thursday afternoon.

"This week we had the first meeting of the committee and meetings are going to continue this summer in order to obtain answers as clearly and as quickly as possible," Banville said in French, noting that clear answers could take "many months" to find.

The committee will analyze the results of Public Health interviews that are underway now, asking patients and their families about where people who are part of the cluster have lived and worked, and what they've eaten, among other questions.

So far, five patients or their family members have completed Public Health's questionnaire, with five more interviews scheduled for this week and several more to be followed up on, Shephard said.

Shephard has estimated those questionnaires will take six to eight weeks to complete, and the timeline for experts to review the results is four months.

In the meantime, health officials will tell the public less about the cases under investigation.

Previously, Public Health listed how many of the 48 cases are considered to be confirmed to have the mystery brain disease and how many people are suspected of having it but not yet confirmed. But on Thursday, Shephard said officials would no longer make that distinction.

"As the syndrome and or its causes have not been identified, we are refraining from using words like confirmed or diagnosed," she said.

Public Health will also no longer break down where cases of the mystery disease are detected within the province.

When the province had identified 43 cases, Public Health officials said 35 were identified in the Acadian Peninsula and eight in the Moncton region.

Shephard has since said that cases have been identified outside those two regions, but when asked to give an up-to-date breakdown on Thursday, she said health officials would no longer do that.

She said the questionnaire will help determine whether the 48 people are from the areas where they are currently living or if they have lived elsewhere.

"There's a lot of information that needs to be examined before making some real judgment on that," Shephard said.

"What we know is that they [the cases] are not just secluded to two areas. We have other cases that are also in this mix. And it would be I think it would be a short-sighted viewpoint to start targeting areas without understanding what that means."

The first case of the disease was retroactively identified from 2015, and the disease has been found in patients as young as 18 and as old as 85.

'We have no theories'

The oversight committee is charged with reviewing medical records from affected patients, reviewing the results of the questionnaire, scanning applicable research and "reviewing gaps in the electronic medical records and recommending areas for improvement," among other things.

A March memo from Public Health said the disease, though not Creutzfeldt-Jakob disease, or CJD, shares many similarities to it. CJD is a rare disease that progresses rapidly and according to the Centers for Disease Control and Prevention, is "always fatal," usually within one year of onset of the illness.

CBC News journalists are working diligently to try to learn more about this disease. If you or a family member have information you'd like to share with us, please email neuro-nb@cbc.ca.

Health officials have previously said that an environmental cause is the leading hypothesis, and the committee will cast a wide net when trying to figure out what's causing the mystery brain disease, Hendriks said.

"I know some people have put on the table, 'Well, could it be this? Could it be that?'" he said.

"At this point in time, we don't know. Everything is on the table. We're going to look at every possibility and hopefully we'll try to develop a good understanding of the disease."

Banville said doctors can't yet give the public advice on what to do to protect themselves from the mystery illness, since they don't know what's causing it.

"We have no theories yet," she said in French.

"We're researching. We have no environmental causes, we have no genetic causes, we have no medication causes, we have no cause established."

When asked what health officials have learned from the brains of at least three patients who have had an autopsy, Banville said they don't have the results of those autopsies.

"But that's going to be part of the review that we're going to conduct," she said.

"And after we do the review, we're going to have answers. If there's something shown with the results that we think it's related to something, it's going to be shared with the public at that time."

Letter to be sent to patients and their families

In late April, Horizon Health Network announced it will create a special clinic to assess people experiencing quick or early-onset cognitive decline as possible cases of the disease continue to pop up.

Hendriks said more than 40 people have since been seen by that clinic, all referred by neurologists or family physicians. It's not clear whether all those people are part of the cluster of 48 or represent additional potential cases.

Among those who are part of the identified cluster, multiple patients or their family members have expressed concern about a lack of communication and transparency from Public Health officials. They've called for regular public briefings and for Public Health to tell the public when a cause has been ruled out.

On Thursday, Shephard said she understands it's an "anxious time" and some families have lost relatives and want to know why they've passed away.

"A letter will be going out today to all families and individuals to let them know how this process is unfolding, to give them assurances that they are not forgotten, that we understand they are waiting," she said.