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Renewed Hope for B.C. Girl with Rare Disease as New Information Presented to Health Minister
- The B.C. Ministry of Health ended funding for Brineura, leaving 10-year-old Charleigh Pollock without her only treatment.
- Following committee recommendations, the Canadian Drug Expert Committee cited strict clinical criteria, deeming Charleigh too deteriorated for continued Brineura funding due to insufficient evidence of benefit.
- Dr. Ineka Whiteman stresses unpublished clinical scoring criteria expose flawed assessment, citing seizure relief benefits and warning that brain cell loss is irreversible.
- Health Minister Josie Osborne must decide by July 9 as the Vancouver Island community continues rallying for Charleigh's treatment.
- This decision could set a troubling precedent for rare disease patients, prompting wider debate over treatment policies and support, as families and communities continue advocating for access.
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Information for medication for Charleigh to be forwarded for review: Premier
B.C.'s premier says information presented to the health minister on Friday about the medication for a terminally ill 10-year-old will be forwarded to experts for review, but continues to make no promises on resuming funding.
·Victoria, Canada
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Vancouver Island Community Rallies for Charleigh After Rare Disease Medication Cut Off – Patient Worthy
The Vancouver Island community has come together in an emotional show of support for nine-year-old Charleigh Pollock after news broke that the B.C. government is discontinuing coverage of the only medication that slows the progression of her rare, terminal disease. Charleigh, who was diagnosed in 2019 with Ceroid Lipofuscinosis Type 2 (CLN2), or Batten disease, […]
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Total News Sources16
Leaning Left12Leaning Right0Center1Last UpdatedBias Distribution92% Left
Bias Distribution
- 92% of the sources lean Left
92% Left
L 92%
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