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News from North America – HAE International (HAEi)

News from North America – HAE International (HAEi)

 


By 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 the HAEi Advocacy Academy to its 500 members and to make the HAEi Emergency Department poster available in Canada. We were pleased to visit the capital city of Ottawa and meet with HAEC leadership along with a key HAE physician/scientist in late 2023. Discussions focused on progress in obtaining approval and reimbursement of new HAE drugs 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 this process included writing a powerful letter to Canadian drug approval authorities that included influential input from our Chief Medical Advisor, Prof. Marcus Maurer. The letter communicated our surprise at the rejection and noted that Canada stands out as many other countries had already approved the drug and were providing reimbursement.

HAEC has been awarded a coveted accreditation by Imagine Canada, an organization that evaluates not-for-profit entities against a very high standard for overall governance and effectiveness. The organization is also hard at work preparing its National Report Card, which will provide stakeholders with an overview of key activities and achievements. Finally, HAEC leadership and members made important contributions in various sessions 2024 Regional Conference of the Americas.

The US HAE Association (HAEA) continues to serve its 10,516 members with personalized programs and services to improve the overall health and well-being of communities. HAEi frequently advises and collaborates on research projects, demonstrating the burden of HAE and the transformative impact of modern HAE treatments. Recent HAEA medical journal publications include studies showing (1) dramatic improvements in quality of life in people receiving preventive treatment and (2) the impact of insurance delays on denials in terms of increased assaults, visits to ER and hospital and feelings of anxiety. HAEA recently submitted a paper for publication summarizing the development of a new, comprehensive HAE quality of life instrument, which we believe can be validated for use in many other countries. A manuscript for a study estimating the prevalence of HAE in the United States is currently being drafted and will be submitted to a medical journal in late May.

HAEA is planning a special gala to honor people who receive college financial aid from its Pam King Scholarship Fund. The gala will feature inspiring success stories from recipients who have used scholarship money to earn college degrees that propelled them into successful careers. Finally, in May, 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.

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