Answering TTP Foundation strives to raise awareness for TTP and to represent a unified voice of action for the TTP community. Currently, our advocacy focus is to gain access to caplacizumab for treatment of TTP in Canada. To gain access in your province/territory we will need your help. This is a province-by-province/ territory-by-territory battle that will require a national network of advocates.
Details coming soon regarding our next Take Action - Canadian Virtual Community Meeting. These education and advocacy sessions will inform and empower our community to learn about new developments in our province-by-province/ territory-by-territory battle for access to caplacizumab. Whether you attended the kick-off meeting on April 28, or just heard about this advocacy initiative, we'd love to have you join us. Access to caplacizumab for patients in Canada will require effort in every jurisdiction. We need your help, and you can tailor your commitment to suite your schedule. From a few clicks, to a meeting with your elected representative, every effort counts and we are developing a toolkit to tackle this together.
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.
- We have engaged our patients and supporters with a NEW MODE letter campaign to write their provincial health minister and MPP/MLA.
- We have written TTP physicians and nurses in hopes of collaboration/identifying gaps.
Next steps are currently being outlined. It is becoming clear that we will need a national network of advocates to help in this province-by-province/ territory-by-territory battle. If you are interested in joining the Canadian TTP Action Group, please email firstname.lastname@example.org.
Answering TTP Foundation strives to raise awareness for TTP and to represent a unified voice of action for the TTP community. Advocacy plays an integral role in our mission. Answering TTP Foundation endeavors to obtain feedback from the entire TTP community to ensure a strong patient voice within the Foundation. Our advocacy efforts aim to increase funding to treat and cure TTP; improve access to health care and to increase the profile for TTP. Beyond the Foundation’s own advocacy efforts the Foundation also regularly sends delegates to represent the Foundation at conferences and meetings. The Foundation regularly sends representatives to meetings of the Canadian Organization for Rare Disorders (CORD) and the Network of Rare Blood Disorder Organizations (NRBDO) to learn and contribute to discussion issues surrounding awareness, advocacy and treatment of rare diseases.
In addition to sending representation to external meetings, the Foundation creates working groups as needed to discuss key advocacy issues. Past and current projects include: providing feedback to our partners in the TTP and rare diseases community, creating a TTP Volunteer Speakers Bureau, advocating for appropriate access to Solvent Detergent Plasma (SDP), and TTP community surveys.
We try to obtain media coverage for all our events in order to raise the profile of TTP within our communities in an effort to speed diagnosis and save lives. Articles are listed within the Resource Links section of our website. If you are affiliated with the media and would like to focus a story on TTP please contact us.