Public Health interviews with people with mystery brain disease could take 6 to 8 weeks
Luc LeBlanc hopes the questionnaire provides answers, but worries the clock is ticking
New Brunswick Public Health expects it could take six to eight weeks to interview everyone who has a mystery brain disease, a process they hope will yield vital clues about what's causing the illness.
Health Minister Dorothy Shephard told CBC News that Public Health has interviewed five patients or their family members so far, with more interviews scheduled for next week. At least 14 patients or their relatives have signed consent forms, agreeing to take part in the interviews.
The data will be analyzed by Public Health epidemiologists, medical teams and a three-person steering committee that Shephard said would be introduced next week.
"We don't know where this is going to lead us so we have to have a very diverse group of people who will be helping to delineate the information," Shephard said in an interview on Friday.
The interview process comes nearly four months after Public Health said it first drafted a case definition for the neurological illness, which has so far taken six lives and has sickened at least 48 people in total, primarily around the Acadian Peninsula and Moncton areas.
For patients and their families dealing with a disease where symptoms only get worse with time, four months is an excruciatingly long wait.
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.
Luc LeBlanc said he was told months ago that he was a suspected case of the mystery disease by Moncton neurologist Dr. Alier Marrero. LeBlanc has been waiting for a concrete diagnosis and for calls from researchers since then.
He received test results in April that confirmed he was part of the cluster.
Then the 41-year-old from Dieppe got a call from Public Health earlier this week. He is scheduled to be interviewed next week.
"It took them to be pushed hard for them to basically, to take these steps," LeBlanc said in an interview.
"It's ridiculous. Will it be like this all the time? If so, for some people it's going to be unfortunate."
He was happy to receive a call from Public Health, but for LeBlanc and others who are dealing with the illness, the clock is ticking.
"It [the illness] could take me in two months or one month, three months from now. I don't know. But it's a sad situation."
'They could put peace of mind to people'
Shephard has maintained the province isn't holding back any information on the cluster, which was revealed to the public in March only after a memo to physicians was leaked to Radio-Canada.
When asked on Thursday to respond to criticism that Public Health isn't moving fast enough, Shephard said officials are "essentially starting from scratch," with only CJD ruled out.
"I know that this is agonizing for families looking for a diagnosis, because hopefully a diagnosis leads them to treatment," Shephard said on Thursday.
"But this process cannot be hastened beyond what is being done right now."
LeBlanc said he was told the questionnaire could take between one to three hours and would ask questions about his habits, places he'd lived and things he'd eaten, among other things.
He said he knows researchers may not find a cure, but he hopes he and others will finally have some answers.
"The miracle cure probably won't exist," he said.
"But if they could put peace of mind to people, I think that's all they want."
Some cases outside Moncton, Acadian Peninsula
Shephard has encouraged people who are part of the cluster — or in some cases, the family members speaking on their behalf — to agree to the interviews, because the information could determine Public Health's next steps.
While most of the cases are clustered in the Moncton area and Acadian Peninsula, Shephard said on Friday that there are some cases in other areas of the province, too.
"What that means, we don't know," she said.
"That's why the questionnaires are so important, because we don't know if people travelled and that's related. We don't know if they have never gone from their area and that's related. That's part of what this investigation is all about."
While the minister has said no potential cause of the illness is off the table, other than CJD, Marrero has previously said the leading hypothesis is that it's acquired by exposure to something in the environment.
Several other government agencies, from the Canadian Food Inspection Agency to New Brunswick's Department of Agriculture, Aquaculture and Fisheries, have been asked to partner with Public Health on the investigation.
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.
Shephard couldn't say what specifically those departments have been doing to help find the cause of the illness. She said they need the information researchers hope the questionnaire will unlock so they can do things like collect environmental samples.
"I won't say that there's nothing being done with regards to environment or agriculture at this time," she said Friday.
"But the fact is, is the most important component of what this team needs right now is the information that's going to be contained in these questionnaires."
Hope for answers
Steve Ellis was happy to hear about people receiving calls from Public Health, after calling for the department to tell the public more about what it is doing to find answers about the mystery disease.
Ellis's father, Roger Ellis, is suspected of having the mystery illness.
"I know there are at least two or three people that I've spoken with who are confirmed cases who actually have dates and times booked for the actual questionnaire," Ellis said in an interview.
Ellis has a virtual appointment on Tuesday with Marrero, where he suspects he will find out whether his father is a confirmed member of the cluster. He's been awaiting the results of tests ordered for his father, including blood work, urine analysis and toxicology.
While Ellis hasn't yet received a call to take part in the questionnaire, he expects that will happen if his father is confirmed to have the illness.
"I fully expect my dad to be moved over to a confirmed case," Ellis said.
"I will be shocked if they come up with some other diagnosis for some other illness he has. But even if he has some other illness and he's no longer part of this condition, I'm still going to advocate for everyone else."
Ellis said he's pleased that Shephard kept her word about the interview process beginning this week.
But he would still like Public Health to be more transparent about what work it's doing. That includes adding more details to a government website about the cluster and giving regular public updates to keep people informed.
"I think that there need to be regular briefings, just like they do with COVID-19," Ellis said.
"Probably not to that frequency but once a month or something like that, just telling us what's happening."
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.
Province's website
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.