From Regional Patient Advocate Anthony J. Castaldo
HAEi has frequent and productive contact with the HAE Canada (HAEC) Team, including President Michelle Cooper, Past President Jacquie Badiou, and Chief Operating Officer Daphne Dumbrille. HAEC is working to promote HAEi Advocacy Academy to their 500 members and make the HAEi Emergency Department poster available in Canada. We were pleased to visit the capital city of Ottawa and meet with HAEC’s leadership along with a key HAE physician/scientist in late 2023. Discussions centered on the progress in getting new HAE medicines approved and reimbursed in Canada and how HAEi can help.
HAEi helped HAEC overturn a regulatory decision denying approval of a modern HAE prophylaxis therapy. Our role in the process involved writing a forceful letter to the Canadian drug approval authorities that included an impactful contribution from our Chief Medical Advisor, Prof. Marcus Maurer. The letter communicated our surprise at the denial and noted that Canada stands as an outlier since many other countries had already approved the medicine and were providing reimbursement.
HAEC has been granted a coveted “accreditation” from Imagine Canada, an organization that evaluates non-profit entities against a very high standard for governance and overall effectiveness. The organization is also hard at work preparing its National Report Card, which will provide stakeholders with an overview of key activities and accomplishments. Finally, HAEC’s leadership and members made important contributions in various sessions at the 2024 HAEi Regional Conference Americas.
The US HAE Association (HAEA) continues to serve its 10,516 members with personalized programs and services to improve the community’s overall health and well-being. HAEi often provides advice and collaborates on research projects, demonstrating the burden HAE imposes and the transformative impact of modern HAE treatments. Recent HAEA medical journal publications include studies that show (1) dramatic quality-of-life improvements in people receiving preventive treatment and (2) the impact of insurance delays in denials in terms of increased attacks, ER and hospital visits, and feelings of anxiety. The HAEA recently submitted for publication a paper that summarizes the development of a new, comprehensive HAE Quality of Life instrument that we believe can also be validated for use in many other countries. A manuscript for a study that estimates the prevalence of HAE in the United States is currently being drafted and will be submitted to a medical journal in late May.
The HAEA is planning a special gala to honor people who receive college financial assistance from its Pam King Scholarship Fund. The gala will feature inspirational stories of success from recipients who have used the scholarship money to earn college degrees that propelled them into successful careers. Finally, in May, the HAEA will bring a large group of community members to Washington, DC, for visits with elected officials and discussions about the needs of people with HAE.
