Moncton neurologist asked for help, but alleges was instead threatened with discipline
Internal government documents offer insight into decision to review Dr. Alier Marrero's patient files
On Thursday, Public Health Agency of Canada confirmed its two epidemiologists will work under the supervision of New Brunswick Public Health next month and conduct a "three-day scoping exercise that will include an on-site review of patient records that have been collected to date" by Dr. Alier Marrero.
In a statement, the New Brunswick Department of Health said Marrero has "struggled to fulfil his legally required notification duties under the Public Health Act, and as a result, the department is deploying resources to support him." It is not reopening the investigation into a mystery neurological illness, it said.
Marrero is on vacation and could not be reached for comment, but government emails and letters obtained through right to information requests show he asked the province for help with the required paperwork on May 11.
At that time, he had completed the forms for two patients. Each one was nearly 50 pages and took him a combined six hours, he said.
"Given the significant commitment of time involved in completing these questionnaires, and my busy clinical practice, I would ask for your assistance in completing these forms, as is usually the case when I report cases to the [Canadian Creutzfeldt-Jakob Disease Surveillance System]," Marrero wrote.
Instead, he claims he received a letter from a Vitalité Health Network lawyer about two weeks later "threatening discipline," and accusing him of not respecting the requirements of the Public Health Act, according to the 183 pages of documents.
Cases prompted increased requirements
Under the act, "unusual illnesses" are considered notifiable diseases and medical professionals must report them to Public Health by filling out a special form.
In October 2021, when the province appointed an oversight committee to look into a cluster of 48 of Marrero's patients experiencing neurological symptoms, primarily in the Moncton and Acadian Peninsula regions, it added a requirement that any patients identified as having a progressive neurological syndrome of unknown etiology would require the sign-off of two specialty physicians.
On March 29, 2023, Dr. Jennifer Russell, the province's chief medical officer of health, reminded Marrero of the requirements, as communicated to all provincial physicians in a memo from acting deputy chief Dr. Yves Léger on Oct. 26, 2021, and to Marrero personally in a letter from then-health minister Dorothy Shephard on April 8, 2022.
"Staff have indicated that you have followed the provincial requirements of reporting such cases in only two instances since late 2021," she wrote.
Dr.
Jennifer Russell, the province's chief medical officer of health,
repeatedly reminded Marrero of his obligation to report unusual
illnesses to Public Health by filling out the required paperwork. (Ed Hunter/CBC)
"It is with consternation that I read your letters dated January 30 and March 23, 2023," in which Marrero indicated he had been following the cases of 147 patients, aged 17 to 80, some with "very advance evidence of neurodegenerative diseases," including dementia, severe pain syndrome, brain and muscle atrophy, and some near death.
He also warned that some patients' blood work showed elevated levels for compounds found in herbicides such as glyphosate, and said more testing should be done to rule out environmental toxins, including the neurotoxin BMAA, which is produced by blue-green algae.
"I would ask that you follow this legal requirement," Russell wrote in bold letters.
"The province is not able to make any sort of assessment as to the significance of your findings due to the very limited information provided in your letters.
"We are reliant on you to report these cases to us so that we may gather further information from you that would allow us to determine the relevance of your findings and identify any additional work or scientific and clinical investigation that may be required."
Difficult to obtain second opinions
On April 1, Marrero said he understood the October 2021 directive meant that any unusual illness should be reported to Public Health when the second opinion from another physician had been obtained.
"As I am sure you understand, we are simply not in a position, given the scarcity of resources in our health care system, to obtain timely second opinions for all patients with progressive neurological decline with no known diagnosis."
He claims he made arrangements in 2020-21 for "subject-matter experts" to travel to New Brunswick to evaluate patients, but the province "chose not to avail itself of this invaluable expertise."
On May 5, Russell reiterated the legal obligation of health professionals to report the occurrence of a disease, infection, or condition they reasonably believe could be a risk to the health of the population.
"Attached please find an enhanced questionnaire created to capture the information we are requesting on each patient you have referenced in your letters," she wrote, adding that if Marrero was having issues obtaining needed resources, it was his professional duty to bring this to the attention of his medical department head or other senior clinical and medical leads of Vitalité.
'Extraordinary hurdles'
By the end of May, Marrero's office had completed forms for eight patients, each between 46 and 188 pages, according to the documents. Two of the patients had since died — one within six months of symptom onset, he said, while several other patients' conditions were "rapidly advancing," and some were near death.
"I am certain you can appreciate how difficult it has been for me to advocate for my very sick patients given the extraordinary hurdles that have been imposed on me since May 2021," wrote Marrero.
At that time, he was instructed by Public Health not to report any new cases, he said.
"Shortly thereafter, all scientific work that had been done to investigate the cause or causes of disease in patients was put to a stop, after years of extensive effort."
"Months later, I was directed by government officials not to report cases until I obtained a second opinion from a specialty physician," he said.
Then, in July 2022, he was "suddenly and unexpectedly excluded" from the MIND Clinic, set up to investigate neurodegenerative diseases.
I sometimes sense that my efforts to help my patients are being sidelined with attempts to dismiss my concerns and my pleas and create hurdles, where everyone's priority should be protecting the health and safety of patients and the population of New Brunswick.
- Alier Morrero, neurologist
More recently, Marrero alleges his correspondence to provincial and federal public health officials was forwarded to Vitalité.
He was subsequently summoned to an "urgent" meeting with Vitalité's administration, he said — even before he received an acknowledgement of receipt or response to the Jan. 30, 2023, letter, in which he raised concerns about elevated levels for compounds found in herbicides such as glyphosate.
"Considering this, I sometimes sense that my efforts to help my patients are being sidelined with attempts to dismiss my concerns and my pleas and create hurdles, where everyone's priority should be protecting the health and safety of patients and the population of New Brunswick," he wrote.
Vitalité will "fully collaborate with the exercise undertaken by the New Brunswick Ministry of Health, with the support of the Public Health Agency of Canada," Dr. Anick Pelletier, assistant vice-president of medical affairs, said in an emailed statement.
The additional support provided within the notification process will allow for a thorough review of patient medical records, she said, noting Marrero's schedule will be adjusted to allow him to devote more time to this task.
"It will be up to the Ministry of Health to determine any additional actions that may be necessary," she added.
"He also warned that some patients' blood work showed elevated levels for compounds found in herbicides such as glyphosate, and said more testing should be done to rule out environmental toxins, including the neurotoxin BMAA, which is produced by blue-green algae.
"I would ask that you follow this legal requirement," Russell wrote in bold letters.
"The province is not able to make any sort of assessment as to the significance of your findings due to the very limited information provided in your letters.
"We are reliant on you to report these cases to us so that we may gather further information from you that would allow us to determine the relevance of your findings and identify any additional work or scientific and clinical investigation that may be required."