The Canadian TTP community needs your help in advocating to provincial governments to ensure that aTTP patients can receive access to a treatment desperately needed for our patient community.
As many of you know, our community was excited to hear that Health Canada had approved the use of caplacizumab in March of last year. As the first treatment specifically indicated for aTTP in Canada, we were thrilled to have this option considered in the country.
However, the evaluation Bodies (Canadian Agency for Drugs and Technologies in Health (CADTH) and INESSS), the agencies that provides provincial drug plans with advice on what new drugs and technologies to provide funding for, issued a negative recommendation for caplacizumab in July 2020. This recommendation puts Canadian aTTP patients at a life-threatening disadvantage to its peer countries around the world. Caplacizumab is recommended and available to patients in the United States, Austria, Belgium, Denmark, Netherlands, Finland, Italy, and the United Kingdom.
We need your voice! We need our community to speak out against this decision and urge governments to fund patient access to life-saving treatment.
We have compiled a number of documents for this effort (see links below or attachments to download at bottom of page). These include:
- A key messages document. If you are a patient, or their loved-on, your main goal of having a conversation with your local MPP is to share your experience with TTP, and how caplacizumab brings hope to you. You don’t need facts and figures. This key messages is a quicklist for those who feel comfortable sharing more, or for those with less experience with the disease;
- A two-page fact sheet leave behind document that you can send to the MPP after your meeting. The MPP may also choose to forward this along with the pre-drafted letter (see item 4 below) they will send to the Minister of Health.
- A draft letter for your local provincial elected representative to send to the provincial Minister of Health outlining their support for you as a constituent; and
We will also support you by hosting ongoing virtual community meetings in September where we will run through how a meeting with your MPP may look like with our government relations partner. They will guide our community in understanding how to ultimately make the ask that we want as our end goal: for the MPP to send the pre-drafted letter to their Health Minister to ask for caplacizumab to be included in the province’s formulary.
As a constituent, your local MPP is more than happy to hear from you. In fact, it is their responsibility to hear from those who have elected them. Bring a friend, bring a family member to the meeting - we need our community to come together and participate in these efforts. Without your voices being heard by decision-makers, there is a very good chance that caplacizumab will not be funded for Canadian patients.
Thank YOU for your help!