Caplacizumab was approved by Health Canada in 2020, but is not funded for use in Canada despite being a standard of care in peer nations. Caplacizumab is our only immediate defence against the potentially life-altering blood clots that characterize a TTP crisis. Standard treatments are designed to control the underlying mechanism of disease, but require time to take effect, time that aTTP patients do not have. Caplacizumab can shield patients from the formation of clots, giving standard therapies the time they need to kick-in. Caplacizumab saves lives and prevents disability.
- We provided patient feedback to the Canadian drug evaluation bodies (CADTH and INESSS) that integrated findings from national surveys of the TTP community of patients and supporters.
- We have written letters to CADTH and INESSS to express our disappointment (be on record) after they recommended "do not fund".
- We wrote to provincial and territorial Health Ministers to educate them on the gaps in the CADTH and INESSS evaluation, asking them to add caplacizumab to their provincial formulary, at least first for those patients otherwise not responsing to treatment.
- We hosted a virtual education session with a physician, nurse and patient speaker to provide education to the community. The community was asked to complete 2 action items: (1) participate and share our letter campaign, and (2) discuss the use of caplacizumab with their physician. These "ASKS" are detailed here. The Foundation's presentation slide deck is available here.
- We have engaged our patients and supporters with a NEW MODE letter campaign to write their provincial health minister and MPP/MLA and ask for meeting to discuss adding caplacizumab to the provincial formulary.
- We created a caplacizumab advocacy toolkit of common messaging to help stakeholders.
- We have written TTP physicians and nurses in hopes of collaboration/identifying gaps. In doing so, we have created a Canadian TTP Medical Advisory Panel.
- Hosted a advocacy education sessions to provide an overview of important advocacy principles, context and considerations for advocacy, and engage the community in our grassroots advocacy plans.
- For a second time, provided patient feedback to the Canadian drug evaluation bodies (CADTH and INESSS) that integrated findings from national surveys of the TTP community of patients and supporters. Document here.
- Met with CADTH, and provided feedback on the draft CADTH decision to NOT FUND caplacizumab. Document here.
- Encourage participation at CORD Rare Disease Breakfast at Queen's Park to bring attention to the devestating impact on our community.
- Wrote targeted letters to provinces (Ontario and Alberta) to request access to caplacizumab. Responses were disappointing. Ontario versions of submitted letter and responses here.
The fight isn't far from over. Join our next TAKE ACTION meeting. Details here.