A national non-profit is calling for further transparency in the ongoing investigation into a mysterious neurological syndrome detected in New Brunswick.
In an open letter to the province’s minister of health, Dorothy Shephard, and federal minister of health Patty Hajdu, BloodWatch.org says a lack of transparency is “troubling.”
Formed in the wake of Canada’s tainted blood crisis in the 1980s, BloodWatch co-founder Kat Lanteigne says she sees echoes of how government handled the matter in New Brunswick’s investigation.
“What the governments always say is, ‘We don’t want to scare people.’ Our argument is you’re not scaring people, you’re informing them,” Lanteigne tells Global News.
She says the neurological syndrome needs to be treated as a public health crisis, with similar steps taken as seen throughout the COVID-19 pandemic.
“You should have a specialized health committee with a representative from all parties, because this is not a partisan issue,” says Lanteigne.
By Premier Blaine Higgs’ own admission, an all-party committee served the province well while tackling COVID-19 — so Lanteigne questions why the reigning Progressive Conservatives have taken this on solo.
She also believes a patient representative approved by impacted families should be brought to the tables to ensure information is being provided to them with no political interference.
As it stands, some of those families say they feel locked out.
“They’re certainly making it seem like they’re hiding something,” says Steve Ellis, whose father, Roger, is one of the 48 announced patients fighting the syndrome.
In a statement sent to Global News Thursday, a spokesperson for Shephard’s office says the investigation is ongoing, with updates to come as they see necessary.
“Transparency has been and continues to be paramount regarding the potential neurological syndrome of unknown causes,” said Bruce Macfarlane, director of communications for New Brunswick’s Department of Health.
“The oversight committee, which is composed of two co-chairs, a Medical Officer of Health and six neurologists, is in the middle of clinical and investigative work and we firmly believe in letting the process run its course.”
Ellis says he recently wrote a letter to Shephard with recommendations he had for how families can be better kept in the loop, a list he says he compiled with input from others in his shoes.
He says he asked for case information to be made public in a similar style to what the province put out for COVID-19 cases — age breakdowns, locations, etc.
“Very recently I received a letter from Minister Shephard indicating that they would not address any of my recommendations until their investigation is complete,” says Ellis.
He says he’s told that investigation includes lengthy surveys of the 48 so-far confirmed cases of the syndrome, one of which he completed on behalf of his father.
According to the province’s information page, the process of conducting those surveys began on May 26, 2021.
As of Aug. 5, they say 23 have been completed.
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