HAE Canada’s summer started on a high note when we officially launched our new Strategic Plan and added it to our website. After months of dedicated brainstorming and strategizing, the HAE Canada Board of Directors and the HAE Canada staff successfully crafted our next five-year HAE Canada Strategic Plan. This comprehensive roadmap is a testament to our shared vision and commitment to advancing the mission of HAE Canada. Our new Strategic Plan meant updating our Vision and Mission:

Our Vision
That all Canadians with hereditary (HAE) and related angioedema achieve optimal health and well-being while living attack-free lives.

Our Mission
Provide support, education, and resources to our community, and advocate for exceptional disease management and equitable access to treatment.

It’s a great achievement that reflects our collective passion and drive to make a lasting impact in the HAE community. A special thank you goes to Heather Dow, who expertly guided the board throughout the strategic planning sessions and enabled the team to come up with this fantastic plan.

>> You can find our new Strat Plan on our website (in both English and French).

In Canada, Canada’s Drug Agency (CDA), a not-for-profit health organization, provides advice to decision-makers (provincial and territorial governments) so they can make informed decisions regarding reimbursement for drugs in Canada. CDA’s advice is based on many different factors, including the patient’s perspective. Over the summer, HAEC provided CDA with two patient submissions: one to support garadacimab becoming available and one to support icatibant becoming available to Canadians with HAE with normal C1. Quebec has its own organization, Institut national d’excellence en santé et services sociaux (INESSS). We also provided a submission to INESSS for garadacimab. We want to extend a huge thank you to our members who shared their experiences with using these two treatments so we could create robust and informative submissions. We were thrilled with what we provided, and we are now anxiously waiting to hear if CDA decides to recommend reimbursement for these two effective treatments.

In August, Michelle Cooper (HAEC President), Kerstyn Lane (Pacific Regional Director), Daphne Dumbrille (COO), and Heather Dow traveled to beautiful British Columbia to host a Patient Information Update in Vancouver. Joe Farago (Executive Director, Market Access) from Innovate Medicines provided an informative presentation explaining the path a drug follows, from when it’s first submitted to Health Canada until it reaches a patient. Next up was local allergist Dr. Peter Stapaniuk, who provided details about the specific process that a drug takes in BC, and he also discussed the latest HAE treatments that are “on the horizon”. Last but not least, Anthony Castaldo from HAE International presented about HAEi’s latest resources, specifically HAEi’s Advocacy Academy. We wish to extend a warm thank you to our presenters; they did an amazing job!

Once the CDA gives its thumbs up and recommends that a new treatment should be reimbursed in Canada, the next step is for the manufacturer to negotiate a fair price with the Pan-Canadian Pharmaceutical Alliance (pCPA). In September, we were thrilled to learn that BioCryst Pharmaceuticals successfully completed negotiations with the pCPA for the oral, once-daily treatment ORLADEYO (berotralstat). This treatment is approved in Canada for the routine prevention of attacks of HAE in adults and pediatric patients 12 years of age and older. BioCryst can now work towards implementing public funding for ORLADEYO for eligible HAE patients. Canadian HAE patients are one step closer to accessing the first oral medication to treat HAE. There is still advocating work to be done, and HAE Canada is dedicated to helping Canadian patients access this new treatment.

CDA’s Newborn Screening Advisory panel also requested feedback on the CDA discussion paper outlining its approach to developing newborn screening guidance. We had expert help from two of our member volunteers, Erin and Tracy, to prepare and submit a response in early September. We always greatly appreciate contributions from our volunteer members!

Speaking of the CDA board members, Kim Speiss and Daphne were fortunate to attend the CDA-AMC’s 2024 Symposium in Ottawa in September. As always, CDA did a fantastic job hosting this important event, the first after introducing their new name & brand (formally known as CADTH). CDA discussed how they are working hard to incorporate patients’ experiences when making decisions on reimbursement for drugs and technologies in Canada. It was a wonderful opportunity to learn about CDA’s projects and initiatives while connecting with other patient groups, our sponsors, and Canadian physicians.

The Canadian/International HAE Guidelines have been developed to ensure Canadians with HAE receive relevant and up-to-date care. Since the last Guidelines were released in 2019, new treatments and practices have been developed; therefore, leading Canadian and international HAE physicians gathered in Toronto in September to discuss how to update these Guidelines best.

We want to extend a huge thank you to the Canadian HAE Network (CHAEN) for inviting HAE Canada to the meeting; Michelle, Kerstyn, and Daphne were fortunate to attend. We greatly appreciated being part of such an important and valuable process. We left knowing that the patient’s voice was truly listened to and heard; for that, we are grateful. Also, thank you to HAEC’s past president, Jacquie Badiou, who represented HAE Canada on the Guidelines Committee. She provided the patient’s perspective in the Guideline Committee meetings in the year leading up to the event.

Throughout the weekend, we were continually reminded that HAE treaters are deeply dedicated to providing the best care possible for people with HAE. Seeing experts willing to volunteer their time for such an important cause was heartwarming. We are very much looking forward to seeing the final publication.

Board members Michelle, Kerstyn, Kim, and Carmen Craciun (Treasurer), along with Daphne and Heather, were privileged to attend the 2024 HAEi Global Leadership Workshop in Copenhagen, Denmark, in October. Our fellow member organizations from across the globe, industry representatives, and leading HAE physicians were also attending the conference. The conference days were filled with learning, networking, and connecting with old and new friends. We were proud to contribute to the ACARE Global Angioedema Forum 2024, with Michelle presenting our poster titled HAE-nC1-INH: Treatment of Acute Attacks.

We were thrilled that Michelle was invited to present at the session titled “Raising Awareness Through Media and Events.” She did a wonderful job summarizing our successful social media campaign to celebrate HAE Day 2024.

Thank you, HAEi, for hosting this important and very worthwhile event. Bringing the community together in such a meaningful and productive way was truly appreciated. We left feeling energized and hopeful for a bright future for people with HAE.

We are now gearing up for our next Patient Information Update on 19 October in Halifax, Nova Scotia. Our last Update in Halifax was in 2019, so we are excited to reconnect with our members on the East Coast!