From Daphne Dumbrille, HAE Canada

To kick off 2025, HAE Canada Board members Michelle Cooper and Kim Speiss appreciated the opportunity to escape the Canadian winter to attend the American Academy of Allergy, Asthma & Immunology (AAAAI) / World Allergy Organization (WAO)’s Joint Congress in San Diego, California, from February 28th to March 3rd. They were pleased to observe numerous posters related to HAE while proudly presenting the HAE Canada poster titled “Icatibant Use in Patients with HAE with normal C1-INH”. When they were not presenting the poster, they connected with leading HAE experts and attended presentations on various topics concerning HAE. On Saturday evening, they enjoyed meeting up with the other Canadian attendees at the Canadian Society of Allergy and Clinical Immunology’s Reception. Michelle and Kim left the conference feeling appreciative and encouraged by the dedication of numerous physicians and scientists to HAE research.

Each year, on February 28th, over 100 countries come together to celebrate Rare Disease Day. This day of unity raises awareness and encourages policy change for over 300 million people across the globe with a rare disease. To mark this occasion, HAE Canada organized for Winnipeg’s Esplanade Riel Bridge and the Winnipeg Sign to be one of many Canadian monuments to shine pink, purple, blue, and green to Light Up for Rare. It is incredibly impactful to witness monuments across the globe lit up in the Rare Colours to bring a spotlight to rare diseases. We applaud RareDiseaseDay.org, along with the Canadian Organization for Rare Disorders, for organizing the event.

As mentioned in the November 2024 issue, HAE Canada provided Canada’s Drug Agency (CDA), the health agency responsible for advising the government on treatment reimbursement, with a patient submission to advocate for access to icatibant for Canadians with HAE with normal C1. We are pleased to announce that after reviewing HAE Canada’s submission, along with contributions from other sources such as the Canadian HAE Network (CHAEN) and assessing the evidence demonstrating the efficacy of icatibant for this patient population, the CDA has concluded that individuals with HAE with normal C1 should have access to icatibant. Although this decision does not immediately grant access or reimbursement to people with HAE with normal C1, it represents a significant milestone as it is the first successful step towards achieving access. We will now focus on advocating for each province and territory to include normal C1 patients in their respective formularies.

More patients in Canada now have access to Orladeyo, the first oral preventative treatment for HAE. We are thrilled to report that people with Type 1 or 2 HAE in Ontario now have the option to access and be reimbursed for Orladeyo. Ontario is the fifth province to add Orladeyo to the provincial formulary, behind Alberta, British Columbia, Nova Scotia, and Quebec. Based on the speed of negotiations between provinces and the manufacturer, BioCryst, we are confident that it will not be long before the rest of Canada will have access to Orladeyo.

HAE Canada Board and staff are looking forward to our next 2 projects. At the end of March, the Board will travel to Ottawa for our annual Board Retreat to determine our next projects and initiatives to ensure we fulfill our mission and vision set out in our current Strategic Plan. We are also looking forward to hosting our next hybrid Patient Information Update from Timmins, Ontario, in early April.
We are pleased to see a growth in our membership, which reinforces our dedication to our mission and values. This steady increase motivates us to remain committed to assisting HAE patients in achieving the quality of life they deserve.