From Daphne Dumbrille, HAE Canada

The first four months of 2026 have been incredibly active for HAE Canada, with major efforts focused on advocacy, education, awareness, research, and improving access to treatment for people living with HAE across Canada. Through collaboration with healthcare professionals, government agencies, industry partners, and the global HAE community, HAE Canada continues to work toward a future where every Canadian living with HAE has equitable access to timely diagnosis, effective treatment, and support.

A major focus this year has been policy and reimbursement advocacy. In Canada, Canada’s Drug Agency (CDA-AMC) provides Canada’s health system leaders with independent evidence and advice so they can make informed decisions on treatment reimbursement. HAE Canada provided feedback to CDA-AMC on its “Proposed Enhancements to Drug Reimbursement Reviews.” While supportive of reforms that improve transparency, predictability, and the use of real-world evidence, HAE Canada strongly opposed the removal of the draft feedback stage for patient and clinician groups. The organization emphasized that maintaining and strengthening this step is essential to ensure expert committees fully consider stakeholder input before final reimbursement recommendations are made.

HAE Canada also submitted feedback to CDA-AMC on its draft “Guidance for Incorporating Impacts on Informal Caregivers and Productivity Outcomes in Economic Evaluations.” In its response, HAE Canada recommended that caregiver impacts be made more explicit in decision-making processes, including clearer direction on how caregiver quality of life and productivity considerations should influence deliberations and trade-offs. We also urged future guidance to incorporate patient and caregiver out-of-pocket costs.

Continuing our advocacy work in the reimbursement space, HAE Canada submitted patient evidence supporting reimbursement for donidalorsen (Dawnzera) to CDA-AMC. The submission highlighted three key messages: first, that the heterogeneity of HAE and the variable response to treatment create an urgent need for additional long-term prophylaxis options; second, that HAE therapies should not be considered clinically interchangeable due to differences in mechanism of action, patient response, and tolerability; and third, that the ultimate goal of treatment is to allow patients to live attack-free, productive lives with full disease control. Donidalorsen was recognized as a promising therapeutic option that may help more patients achieve that goal.

HAE Canada also continued advocating for broader access to treatments for all people with HAE, regardless of diagnosis subtype or province of residence, in partnership with Global Public Affairs. Our goal is for every province to establish a dedicated funding mechanism allowing patients to access their physician-prescribed treatment of choice. This proposal is supported by the Canadian HAE Network (CHAEN), the national group of HAE treaters in Canada.

One of our significant advocacy efforts this spring was the launch of a second national letter-writing campaign focused on equitable access to icatibant. Following CDA-AMC’s December 2024 Implementation Advice recommending icatibant access for all HAE patients, including those with HAE with normal C1-INH (HAE-nC1INH), HAE Canada mobilized patients, families, and supporters to contact elected officials. More than 220 people participated in the first campaign. The new campaign calls on governments to take two critical actions: add icatibant to provincial formularies for people with HAE-nC1INH and eliminate deductibles and co-pays for people with HAE Types 1 and 2 following the introduction of generic icatibant. We are emphasizing that no one living with HAE should face barriers to care because of their diagnosis or financial situation. For this second campaign, so far over 200 Canadians have sent letters to their local provincial and territorial governments urging them to treat all people with HAE fairly and equitably.

Advocacy efforts also extended to garadacimab (Andembry). Although the treatment received a positive reimbursement recommendation from CDA-AMC in February 2026, negotiations between the pan-Canadian Pharmaceutical Alliance (pCPA) and the manufacturer have not yet concluded through the Targeted Negotiation Process. In response, HAE Canada and CHAEN co-authored letters to both parties expressing concern, as did HAE International at HAEC’s request. The letters emphasized the urgent need for Canadians to gain access to garadacimab as soon as possible, highlighting that HAE treatments are not interchangeable and that patients require access to all available therapies due to the highly heterogeneous nature of the disease.

There was also exciting progress in provincial access. HAE Canada recently learned that people in New Brunswick living with ALL types of HAE, including those with normal C1-INH, now have access to icatibant through the provincial drug formulary. Previously, coverage was limited to patients with Type 1 or 2 HAE with a confirmed C1-esterase inhibitor deficiency. The updated 2026 criteria removed the explicit lab-confirmed C1-INH requirement, representing a major step forward for patients in the province. We extend a huge thank you to the Government of New Brunswick for helping to improve access to care for people with HAE.

Research and knowledge-sharing were also key priorities throughout the spring. In March, Michelle Cooper, HAE Canada President, and Pat Quong, Advocacy Committee Chair, attended the AAAAI Annual Meeting in Philadelphia to present HAE Canada’s poster, Improved Access, Reduced Burden: Patient-Reported Outcomes in Canadian HAEnC1-INH Patients from 2017 to 2024. The poster illustrated that treatment access, attack rates, quality of life, and ability to work full-time have improved significantly since 2017 for people with HAE-nC1INH, although fear of laryngeal attacks remains high.

International collaboration remained another important priority. Members of HAE Canada attended the 2026 Global Angioedema Leadership Conference in Madrid, where more than 800 leaders, advocates, and healthcare professionals gathered to discuss scientific advancements, medication access, advocacy strategies, and program development. HAE Canada was proud to present our poster titled “Unequal Gains: Diverging impacts of new HAE therapies by HAE subtype in Canada” in the conference’s Scientific Program. Following the conference, the HAE Canada Board of Directors, along with key volunteers from our committees, held our annual Board Retreat to establish organizational priorities and initiatives for the coming year.

Community engagement and education initiatives also played a key role during this period. In April, we hosted a hybrid Patient Information Update from Calgary featuring Dr. Dawn Goodyear, who presented on redefining care beyond attacks to whole-patient health, and she also introduced the new Canadian HAE patient registry (CHAER), and provided updates on HAE treatments in Canada. Kris Thompson shared a moving patient story that deeply resonated with attendees, and participants later joined together for a walk supporting the 2026 Global Activity Challenge. We have posted the recordings from this Update on our website’s Learning Hub page.

We also launched a new partnership with MedicAlert to improve access to MedicAlert IDs for Canadians living with HAE. The initiative includes condition-specific educational materials explaining the importance of medical identification and providing healthcare professionals with access to up-to-date emergency treatment protocols for HAE patients.

We also continued developing practical resources for patients and families. Advocacy Committee volunteer, Amanda, created a new Travel Tips document for our website, providing guidance for patients travelling domestically and internationally with HAE.

As the first part of 2026 ends, we remain committed to advancing equitable treatment access, amplifying the patient voice, supporting research and education, and strengthening the Canadian HAE community. We are deeply grateful to our volunteers, healthcare partners, sponsors, patients, caregivers, and advocates whose dedication continues to drive meaningful progress for everyone impacted by HAE.