From HAE Canada
The first event of the year was the 2023 American Academy of Allergy, Asthma & Immunology (AAAAI) Annual Meeting in San Antonio, Texas, United States. Thank you to Suzanne Kelly of Red Maple Trials, who presented the HAE Canada poster on our behalf, titled “Emergency room visits by patients with HAE based on data from the Canadian 2020 national survey”. As one of the authors, she did an amazing job.
We have learned that the event was a great success, and we were excited knowing there were many posters showcasing the latest HAE research. As always, we want to extend our thanks to the co-authors, as well as our Advocacy Committee, for their collaboration and support on the abstract and poster.
>> You can have a look at the poster here.
We are thrilled to share that the Canadian Agency for Drugs and Technologies in Heath (CADTH) recently announced that they are recommending the oral treatment Orladeyo (berotralstat) for reimbursement. This is a significant accomplishment, as Canadian patients are now one step closer to accessing this oral treatment.
As mentioned in an earlier issue of Global Perspectives, HAE Canada provided the patient perspective through CADTH’s patient submission process. At first, CADTH decided not to recommend reimbursement. However, this decision was reversed after further advocacy work and an additional submission from HAE Canada.
Overturning a CADTH decision and getting a funding recommendation changed is a landmark event. We would not have achieved this in Canada without the extraordinary effort, expertise, and time invested by Jacquie Badiou, HAE Canada’s Past President & Advocacy Committee Chair, with the assistance of Anthony J. Castaldo and Henrik Balle-Boysen of HAEi. We want to extend a huge thank you to Jacquie and also to the team at HAEi and the Advocacy Committee, who assisted her with this amazing accomplishment. Thank you also to COO Daphne Dumbrille, and Kim Speiss, Regional Director Central, who helped ensure HAE Canada was given a seat at the table at the reconsideration meeting with CADTH.
To celebrate Rare Disease Day, HAE Canada’s President, Michelle Cooper, attended a Breakfast Reception in Toronto, Ontario, that was organized and hosted by the Canadian Organization for Rare Disorders (CORD). There were many attendees and a wide variety of speakers, including Durhane Wong-Rieger (CEO of CORD), multiple Ontario Members of Provincial Parliament (MPPs), Rute Fernandes (General Manager of Takeda Canada), a patient advocate representative, and a physician from Toronto’s Sick Kids hospital. The speakers discussed how the Ontario government and health sector stakeholders need to collaborate to develop a rare disease strategy that allows patients to equitably access new therapies.
The Toronto Rare Disease Day event set the stage for the March 22 announcement from the Canadian federal government: “up to $1.5 billion over three years will be provided to implement the Rare Disease Drug Strategy”. Working with patient advocacy groups across Canada, CORD consulted with multiple key stakeholders to develop a strategy that will meet the patient’s needs while remaining fiscally responsible in Canada’s public healthcare system. Over her years as President, Jacquie Badiou, while collaborating with Anthony J. Castaldo and Daphne Dumbrille, provided insight and input to CORD in a variety of ways, from participating on a panel to filling out a survey to help ensure this strategy will benefit rare disease patients in Canada. Thanks to this advocacy work from Jacquie, Daphne, and others in the CORD family,
The strategy not only aims to provide better access to therapies but will invest in infrastructure to facilitate faster diagnosis and ongoing patient monitoring. HAE Canada is proud to be part of CORD and grateful to finally have a strategy that will help patients in Canada with a rare disease.
Michelle Cooper was lucky to spend 27 March 2023 attending CORD’s Action Day on Parliament Hill, where she, along with other patient advocacy group representatives, met with Members of Parliament, Senators, and other government officials. They discussed how rare diseases impact Canadian families and communities, and what the federal government can do to provide much-needed support. Following the day on the Hill, Michelle and Daphne attended CORD’s spring conference in Ottawa (while Jacquie participated virtually) titled “Delivering on Canada’s Rare Disease Investment”. Experts from across Canada, including physicians, patient group representatives, and government and pharmaceutical representatives, presented throughout the two-day conference discussing how to optimize the newly announced Rare Disease Drug Strategy in Canada. By the end of the conference, people were feeling hopeful and energized. We are proud to have a long-standing relationship with CORD, participating in Action Days and many conferences and webinars with current and previous board members.
To honor Rare Disease Day 2023, Kim Speiss shared her patient journey in Patient Voice, an online publication that helps amplify the patient voice to help decrease the stigma many patients with a rare disease face. HAE Canada is proud to have an HAE patient featured in Canada’s Rare Voices 2023. Thank you, Kim, for generously sharing your story.
>> You can read Kim’s story here.
HAE Canada started celebrating hae day :-) slightly early by hosting a hybrid Patient Information Update on 29 April 2023 in Edmonton, Alberta. This was our first in-person event since the start of COVID-19, and it goes without saying that we were absolutely thrilled to bring people together. Pacific Regional Director Kerstyn Lane expertly organized this event that brought in members from the area to hear about the latest news from the HAE community. Attendees enjoyed a variety of presentations, specifically from:
- HAEi’s Anthony J. Castaldo, who discussed HAEi’s role internationally,
- Jacquie Badiou, who introduced Michelle Cooper as the new President,
- Michelle Cooper, who provided an update on the latest HAE Canada events and accomplishments,
- Kerstyn Lane who kept everyone’s full attention while she generously shared her incredible patient story,
- Dr. Bruce Ritchie, who kindly joined us remotely from his holiday in Spain, discussed HAE patient care in Edmonton and treatment options, and
- Dr. Adil Adatia, who presented on how HAE causes swelling, how to effectively treat attacks, the role of genetic testing and current and upcoming treatments.
Daphne Dumbrille moderated the Q&A session at the end while Heather Dow worked behind the scenes on Zoom to allow members from across the country to join the meeting virtually. We were very pleased to have many in attendance on a Saturday afternoon. Thank you to our speakers for taking time out of their weekends to spend it with us. We are very lucky to have such dedicated physicians in Canada who volunteer their time to ensure patients are well-informed. At the end of the event, we encouraged everyone, both in Edmonton and across Canada, to engage in an activity and add their “steps” to the Global Activity Challenge.
Michelle, Jacquie, Kerstyn, Kim, and Daphne had the pleasure of spending 16 May 2023 with Anthony J. Casteldo and Henrik Balle-Boysen in Ottawa. All were in Ottawa to attend the Canadian Agency for Drugs and Technologies in Health (CADTH) Symposium to learn about important advocacy topics; from the importance of collecting real-world evidence (RWE) to how to accelerate access to new health technologies. It was wonderful to spend hae day :-) with Tony and Henrik – we all added our steps to earn the designated hae day :-) badge.