Family blasts Health Department over lack of updates on mystery brain disease
Interviews promised weeks ago to families and patients have yet to happen, one patient's son says
Steve Ellis has been waiting more than a month to hear from Health Minister Dorothy Shephard after requesting updated information about a mystery brain disease that has so far stricken 48 New Brunswickers.
On Tuesday, he got a reply. But he didn't get answers.
Instead, he said, "I got a form letter telling me what I and everyone else in New Brunswick already knows."
Ellis's father, Roger, is one of the 48 confirmed and suspected cases identified in the province and first reported in March, when Radio-Canada obtained a memo from Public Health to medical professionals. He is still awaiting some test results and is a suspected case at this point, not a confirmed case.
The March 5 memo noted that 43 cases of the disease had been identified so far, most of them in the Acadian Peninsula and Moncton areas, and that five people had died.
The case count has since risen to 48 and the death toll to six. Tests done on the patients have so far ruled out Creutzfeldt-Jakob disease and other prion diseases, and scientists are looking into the possibility that this is an entirely new disease, possibly caused by an environmental toxin.
Families have frequently expressed frustration with the Health Department's handling of information related to the case, repeatedly flagging what they say is a lack of transparency.
On Tuesday, Ellis said his frustration has reached a boiling point.
This is their version of transparency? The clock is ticking for these people and N.B. is dragging their feet.- Steve Ellis, whose father is suspected of having mystery brain disease
He blasted Shephard's response to his questions, and the ongoing lack of answers to questions about when Public Health would be contacting families to conduct investigative questionnaires, as had been promised for weeks.
To Ellis's knowledge, none of the families of the 48 cases have been contacted yet.
Department 'dedicated to remaining transparent': Shephard
In her emailed letter, Shephard told Ellis that Public Health is "dedicated to remaining transparent as their work progresses."
She noted that a website "has been created specifically for the New Brunswick cluster of neurological syndrome of unknown cause, and will be updated on a regular basis."
She also noted that the regional health authorities are "actively recruiting for a specialized clinic for patients suffering from this disease," and that she "has been informed that approval is underway for this unit."
Both the website and the specialized Horizon Health Network clinic were announced three weeks ago.
"This is their version of transparency?" Ellis said of Shephard's letter. "The clock is ticking for these people and N.B. is dragging their feet. I'm furious."
In an email Tuesday evening, Public Health spokesperson Bruce Macfarlane said the department is "currently in the process of obtaining contact information" for the cases under investigation.
He said the department has produced, with input from local and national subject matter experts, an epidemiological investigation questionnaire to gather exposure information from New Brunswickers suspected of having this illness.
"This questionnaire asks lots of details including ... the persons' environment, residence, exposure and travel history. ... Data collected will be incorporated into the investigation to help identify potential sources of the illness," Macfarlane said, adding the department will be in touch with patients or their caregivers "very soon."
In an interview with Information Morning Moncton on Wednesday, Ellis stressed that he does not fault the Moncton Mind clinic, led by neurologist Dr. Alier Marrero, which has been investigating and diagnosing the individual cases.
"Mind clinic has kept their promise by meeting with these patients, doing their due diligence and moving them from suspected [case status] to confirmed, and now they are being made to wait even longer by Public Health," he said.
He also said the families understand that this is a fluid and ongoing situation and that full answers will take awhile.
"We, the people who are affected by this, we understand that there's not a lot of information known yet," he said. "But just keep us informed – at the very least the families but more so the public – as to what's happening. There's no talk."
The information website, for example, could list what causes have been ruled out, something Shephard acknowledged was a good idea on CBC's Political Panel podcast on April 29.
However, Shephard also said in that podcast that the website can only share what information it has, and the problem is that "there isn't any more information."
"I do understand the concern in the community. The issue is that we don't have a diagnosis ... This is a methodical process, the science must do its work," Shephard said at the time.
"They are diligently working on how we get to the other side of this, because I know families want a diagnosis."
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 email@example.com.
N.B.'s mystery disease: What we know so far
What is it?
An unknown neurological disease with similarities to Creutzfeldt-Jakob disease, a rare and fatal brain disease, or prion disease.
What's a prion disease?
A prion disease is a rare disease that pertains to a misfolded protein in the brain. The abnormal folding of the prion proteins provokes a chain reaction that destroys neurons and creates holes in the brain.
When was it discovered?
The first occurrence was retroactively found to have occurred in 2013, after 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 more in 2020 and 12 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 on March 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-eight cases have now been identified.
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 48 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 the affected 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.
In April, Horizon Health Network launched a special clinic to assess people experiencing early-onset cognitive decline as cases of an unknown brain disease continue to pop up.
The province has launched an information webpage on the mystery neurological disease, which it updates with new information. It is found on the government's gnb.ca website, and is called New Brunswick Cluster of Neurological Syndrome of Unknown Cause.
With files from Information Morning Moncton