Jeremy Bray was emotional upon learning that the Manitoba government had not altered its stance on funding his essential treatment, despite his persistent appeals. The 30-year-old, afflicted with a degenerative condition impairing his muscle movement, had sought assistance from Health Minister Uzoma Asagwara to cover the cost of his medication to maintain his remaining independence. Bray, who can only control limited facial features and one thumb, expressed his desire for the province to support him, emphasizing the benefits he has already experienced from the treatment.
Having received the drug risdiplam, also known as Evrysdi, free of charge for over six months due to Roche’s compassionate grounds extension, Bray’s positive response to the treatment was expected to sway the Canadian Drug Agency (CDA) towards recommending it for adults over 25. Despite his improved voice strength, enhanced facial expressions, and increased work productivity as a data consultant, the CDA cited insufficient clinical data from this age group as the grounds for their decision.
Facing the end of Roche’s complimentary provision of the drug, Bray turned to the NDP government for support, hoping for a reversal of their initial denial. Disappointed by the outcome of his meeting with the province, Bray remained hopeful for a chance to continue the treatment, which he believes is benefiting him. Manitoba’s reluctance, in contrast to provinces like Quebec, Alberta, and Ontario that have funded similar cases, was attributed by Bray’s father to financial concerns.
The refusal by Manitoba’s health minister to overrule the CDA’s guidance sparked criticism from opposition leader Obby Khan, who deemed the decision as heartless and callous. Expressing his disappointment, Khan highlighted the emotional toll on the Bray family, as they had hoped for a different outcome following the meeting. Despite the setbacks, Bray’s family remains determined to explore alternative funding avenues for his treatment, refusing to give up on his well-being.
As efforts continue to advocate for Bray’s case, the possibility of conducting a new clinical study to sway the CDA is deemed unnecessary by Dr. Xavier Rodrigue, citing existing evidence of the treatment’s efficacy. Health Minister Asagwara reiterated the province’s commitment to supporting Bray’s family and urged collaboration between Roche and the CDA to consider Bray’s progress as a real-world clinical study for future recommendations.