From HAE Canada
As the season ends, we must start with the most impactful event from fall 2022: the 2022 HAEi Global Leadership Workshop in Frankfurt, Germany. We’d like to deeply thank the HAEi team for giving HAE Canada’s leadership the opportunity to participate in such a worthwhile experience. HAEi did a phenomenal job of bringing organizations from across the globe to meet, learn, reflect, and share. Thanks to the engaging and meaningful presentations, we are excited to put the tools we learned into practice.
Not only did we learn, but we proudly presented our poster “HAE with normal C1 esterase inhibitor (HAEnC1INH): Diagnosis, treatment and attack frequency from the 2020 Canadian patient survey”. We returned to Canada energized, motivated and grateful for having such an engaged and well-informed international umbrella organization.
Soon after returning from Germany, HAE Canada hosted a Patient Information Update in Hamilton, Ontario. We hoped to welcome our members in person, however, rising COVID-19 numbers forced us to hold the update virtually once again. After COO Daphne Dumbrille, highlighted key initiatives and items from HAE Canada, the Ontario Regional Director, Michelle Cooper, presented about the Global Leadership Workshop. Michelle was followed by patients Jordyn and Danielle, who generously shared the journey they have taken. We all appreciated hearing what they have experienced as patients with a rare disease, and how they have become whom they are today after receiving their diagnosis and treatment. Dr. Paul Keith, an allergist and immunologist from Hamilton, shared a very informative presentation on the current HAE treatments in Canada while also explaining the importance of patients participating in clinical trials in Canada. Lastly, Dr. Keith was joined (virtually) by Dr. Sylvain Grenier from Canadian Blood Services, and they each answered pre-submitted and live questions from attendees. Thank you to our members who attended the update, and a special thanks to our presenters and speakers; their time and expertise are always gratefully appreciated.
Directly after the Patient Update, we hosted our 2022 Annual General Meeting. Thank you to Heather Dow for chairing this important event. Thanks to our engaged membership, we held a successful meeting that voted in our 2022-2023 Board of Directors, who then elected the executive positions as follows:
- Jacquie Badiou: Director at Large / Past President
- Michelle Cooper: Ontario Regional Director; President
- Carmen Craciun: Director at Large / Treasurer and Secretary
- Kristen Lane: Pacific Regional Director / Vice President
- Martine Paquette: Quebec Regional Director
- Dwayne Semple: Atlantic Regional Director
- Kim Speiss: Central Regional Director
We are thrilled to announce that Michelle Cooper has generously agreed to take on the President position. This position is a natural next step for Michelle as she has been part of the HAEC Board since 2020 as the Ontario Regional Director, in 2021, she became Vice President and has remained on the Advocacy Committee throughout. After 12 years as President, Jacquie Badiou decided to step down to become our Past President. To say we are grateful for her guidance and leadership is an understatement. She helped HAE Canada become the well-organized and respected patient advocacy group it is today. Thankfully, Jacquie will remain a very active member of our Board of Directors, providing mentorship to Michelle and increasing her advocacy work internationally. On behalf of the entire HAE Canada membership and Board of Directors, we want to profusely thank Jacquie for her unwavering commitment to helping HAE patients and their caregivers in Canada.
Tina McGrath, who sat on the Board since 2018, decided not to renew her term as a Board member. We are grateful for her dedicated years as the Ontario Regional Director and as a member of the Governance Committee, and that she has agreed to remain as one of our Regional Director Assistants for Ontario. Thank you to our returning Board members, who are not only a joy to work with, but also bring their own perspectives and knowledge to the table.
Michelle and Daphne attended the Canadian Organization for Rare Disorders’ (CORD) Fall conference in Toronto titled “Planning for Proof-of-Concept Programs to Transform Vision to Reality”. Canada is committed to setting up a federal Rare Disease Drug Strategy to provide Canadian patients access to treatments. The conference discussed the key elements of what makes up an effective and economic Rare Disease Drug Program. The two days covered a vast number of topics, including genome screening and sequencing, what role patients can play in establishing the Drug Strategy and why it is important to invest in Canadian research. The days were packed with useful and interesting information, and it was great connecting with others in the rare disease community.
The CORD conference discussed the importance of establishing Centers of Excellence in Canada for rare diseases, which brings us to our next topic. We are proud to say that Yang Medicine, headed by Dr. William Yang in Ottawa, was designated as the first Angioedema Center of Reference and Excellence (ACARE) center in Canada. For many years, Dr. Yang has been a tremendous support to HAE Canada, while providing wonderful care to his HAE patients. He is dedicated and passionate about his work, making this designation from HAEi and GA2LEN very well deserved. We are very proud of Dr. Yang and hope his clinic will be the first of many ACARE centers in Canada.
ORLADEYO® (berotralstat) has been approved by Health Canada, and we have been working with the manufacturer, BioCryst, to help support a positive recommendation from the Canadian Agency for Drugs and Technologies in Health (CADTH). This is an important step in Canada because for provinces and territories to fund treatment, the treatment first needs a positive CADTH recommendation. Thank you to HAEi President and CEO Anthony J. Castaldo and Executive Vice President and COO Henrik Balle Boysen for providing input to the patient feedback to CADTH; their contribution certainly made an impact. We hope CADTH will announce their decision early in the new year.
HAE Canada wants to help not-yet-diagnosed and diagnosed HAE Canadian patients who present at the Emergency Department during an attack. We are reaching out to stakeholders to accomplish key strategies, such as having HAE added to the Advanced Cardiac Life Support (ACLS) supportive text and adding HAE to first aid training materials. Fortunately, we have assistance from Canadian physicians, Drs. Susan Waserman, Paul Keith, Allan DeCaen and David Barnes, American physician Dr. Marc Riedl, HAEi’s Anthony J. Castaldo, HAE Canada Board members Jacquie Badiou and Dwayne Semple, and Kim Speiss contributed in Dwayne’s absence. With their help, we are confident HAE will become better recognized by emergency health providers.
We will end with the great news that our recent abstract titled “Emergency room visits by patients with HAE based on data from the Canadian 2020 national survey” has been accepted to the American Academy of Allergy, Asthma & Immunology (AAAAI)’s 2023 Annual Meeting. Thank you to Dr. Suzanne Kelly from Red Maple Trials, and to the contributing authors, for developing this abstract. We are excited to share our data at this prominent event.