Holt, Trudeau discuss collaboration on mystery disease research

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The re-opening of an investigation into atypical neurological symptoms in New Brunswick could be inching closer after Premier Susan Holt and Prime Minister Justin Trudeau discussed the subject last week.

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Holt had her first meeting with the prime minister in Fredericton this past Tuesday. According to a readout on Trudeau’s meeting with the newly elected premier posted on the Prime Minister’s Office’s web page, the discussion included “potential collaboration on studying neurodegenerative symptoms and illnesses.”

During the lead up to the fall provincial election, Holt said on her official social media in August that her team had consulted with experts, and would develop a plan for New Brunswick Public Health to leverage federal assistance and launch an “open and transparent scientific investigation” if elected.

Under the Higgs government a provincial investigation into the atypical symptoms was completed in February 2022 from an oversight committee of independent neurologists who examined 48 cases. The investigation found no evidence that a neurological syndrome of unknown cause existed in the province, or that patients exhibited the same symptoms or shared any common illness.

Brunswick News asked Holt for more details about her discussion with the prime minister about the unexplained neurological symptoms, and the premier said she had asked if the previous offer of funding and resources from the Public Health Agency of Canada (PHAC) to help New Brunswick in its investigation still stood.

“We wanted to know whether that was still on the table because we’d like to take them up on that offer of assistance and the prime minister assured me that he was confident that the Public Health Agency of Canada could honour that previous offer and work with us to figure out what’s making New Brunswickers sick,” Holt said in an interview Thursday.

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Jenna Ghassabeh, a spokesperson for the prime minister’s office, said in an email the PMO had nothing to add beyond the readout from Tuesday’s meeting.

New Brunswick Public Health officials had been regularly meeting with PHAC members and other experts until the meetings abruptly stopped in 2021, citing a need to do a closer examination of the existing cases.

Minutes from meetings between PHAC, the Canadian Institute of Health Research, and the province showed that $5 million in funding was available for further research on the so-called mystery disease before the province stopped the regular meetings and asked for a pause in securing funding.

PHAC spokesperson Mark Johnson said in an email Thursday the agency maintains an open dialogue with Public Health New Brunswick and remains ready to discuss additional support, if requested.

“We will continue to engage with provinces, territories, partners and stakeholders to monitor and understand risks to human health,” he said.

Johnson deferred questions about the $5 million in funding to the Canadian Institute of Health Research.

CIHR spokesperson David Coulombe said in an email Friday it remains ready to provide research support should a request be made by those leading the investigation in New Brunswick, but it would not have a role in the investigation and would only provide research support and advice.

Health department to create investigation plan

Holt said since she received the green light from the prime minister, the next step is for the Public Health New Brunswick team to formalize the support from its federal counterpart and to build its investigation plan.

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Health Minister John Dornan has been briefed on the file by Public Health New Brunswick, said Holt. Dornan’s mandate letter from the premier – which outlines what is expected of the minister in his department to address government priorities –  includes a “scientific review of the mystery brain disease.”

When asked about the transparency of the investigation, to which the Liberals had committed during the election campaign, she said the investigation plan will be public, as well as the process of doing research, collecting data and what findings come from the work.

“I’m learning what it means to move from a prime minister’s directive to a federal government agency and to get those funds flowing and that assistance in place. But what we do here in New Brunswick is Public Health New Brunswick builds out the investigation plan and they have members of their team on it, that we make that open and transparent to the public who needs to know what’s going on with this.”

She noted her team will be looking to see if the province has a way of contacting the patients to keep them informed of the investigation, as well as communicating to the public through the media.

“I think it’s a good takeaway to figure out how do we make sure all of the patients and families involved are getting good communications from us about where things stand because that’s one of the pieces that we specified when we committed to this was that it be an open and transparent investigation because right now people are really feeling a lack of communication, a lack of a sense of urgency not knowing what’s going on or what might happen, certainly not understanding why the help was rejected in the first place and why the government hasn’t seemed to take this seriously to date, so we have to start getting information out there and to them as best we can,” said Holt.

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Brunswick News has reported that a group of close to 50 patients and their families sent a letter to the province’s chief medical health officer Dr. Yves Leger last month to say they had lost confidence in the province’s ability to lead an investigation. Holt, federal chief medical health officer Dr. Theresa Tam, and federal Health Minister Mark Holland were also included in the letter.

The group asked for all of the Notifiable Disease Forms, which have been formally filed to Public Health New Brunswick, to be sent immediately to the Public Health Agency of Canada for review, along with a formal request that PHAC be designated as the scientific lead on their files.

In an email dated Aug. 2 of this year, Dr. Alier Marrero, the neurologist caring for the patients, told Leger he had provided Public Health New Brunswick with 338 “Notifiable Diseases and Events Notification” forms. The patients include residents of seven Canadian provinces, and most patients are from Atlantic Canada.

Another 100 patients are currently being evaluated, and many are related or are members of the same community as his previously reported patients, he wrote.

There are 187 patients under the age of 55, 111 are 45 years old or younger. Marrero said in the email 39 patients have died and others are in advanced stages of neurodegeneration, or in the final stages of life.

When asked if PHAC will take the lead on the investigation, Holt said the plan is for the federal and provincial health agencies to work as partners.

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“If multiple other provinces come on board, then I think the leadership role will shift a little bit, so that remains to be seen. But we need people on the ground to understand New Brunswick and New Brunswickers doing this work, and we need the support of the experts and the resources they have at the federal level to help us move this as quickly as possible and to get the best possible investigation done,” she said.

Holt said her team was recently made aware of cases in Nova Scotia. Though she did not believe she would be able to reach out to incumbent Premier Tim Houston in the middle of an ongoing election in Nova Scotia, she did say Public Health New Brunswick could contact Public Health Nova Scotia to see where they stood on the file.

The premier addressed the hesitation of some patients, and their loved ones, who have a hard time trusting that the new government will follow through on its commitment because of how the previous provincial investigation was handled.

“I understand the skepticism. They have every reason to feel skeptical because I don’t think their struggles have been taken seriously or treated with the urgency that it deserves,” Holt said.

Health Department spokesperson Sean Hatchard said in an email Thursday Public Health New Brunswick is working in collaboration with PHAC as well as the Vitalité Health Network to support Marrero with his legal reporting requirements.

Public Health has received a total of only 29 completed notifications from Dr. Marrero since May 2023, said Hatchard.

“Once all completed notifications have been received, Public Health’s Epidemiology and Surveillance Branch will initiate an analysis plan, which was developed with the support of PHAC. The result of the analysis will determine what next steps are needed,” said Hatchard.

He added Public Health would welcome the support of PHAC in reviewing the findings of the analysis and providing them with any advice or suggestion on its interpretation, or thoughts on further work that could be considered.

-With files from Andrew Waugh

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