From Regional Patient Advocates Anthony J. Castaldo and Henrik Balle Boysen
Over the past several months, we have seen some very positive developments in the North America and Southeast Asia regions. Each of our countries brought a strong contingent of leaders to the 2024 HAEi Global Leadership Workshop, and we were delighted with the solid number of physicians from the region who attended the ACARE Global Angioedema Forum 2024.
HAEi was honored to deliver a presentation on HAEi Advocacy Academy at an August HAE Canada (HAEC) Patient Information Update in Vancouver. We are also pleased to be in the process of working with HAEC to implement the HAEi Clinical Trial Awareness Framework for a trial that will soon begin recruiting in Canada. HAEC is a mature, experienced, and sophisticated organization, and we’re delighted that the Trial Awareness Framework package will serve as a useful supplement to their clinical trial awareness and recruitment efforts. Finally, we were pleased to engage in discussions with the HAEC President and provide HAEi’s perspectives and experience as the organization prepared for a meeting to update the Canadian/International HAE Guidelines.
HAEi’s continued close collaboration with HAE Philippines (HAEP) is beginning to bear fruit! Together, we are working closely with three Allergy/Immunology specialists who have a special interest in educating clinicians on HAE symptoms, increasing the diagnosis rate, and advocating to bring modern treatments to the country. These physicians have already implemented our HAEi Heat Map survey and are following up on cases identified through the project. They have also requested that we work with them and HAEP to conduct our Baseline Burden of Illness Study.
Throughout the summer months, HAEi, HAEP, and the active physicians have engaged in numerous discussions regarding strategies for taking action to engage with pharmaceutical companies and the Philippine government. We imparted our experience and provided examples of the bold steps and creative actions required to access modern medicines. We are very excited to report that our colleagues in the Philippines held successful meetings in September with a pharmaceutical company and a high-level official in the Department of Health. We are excited to report that (1) the pharmaceutical company has expressed interest in bringing medicine to the Philippines, and (2) the government representative disclosed there is funding for rare disease medications and pledged to work with the doctors and HAEP to bring desperately needed treatment into the Philippines.
In addition, we are working with HAEP to:
- add content to their website
- make the ER poster available at key hospital centers
- organize a patient meeting
- broaden the use of HAEi Advocacy Academy, and
- conduct an online seminar to introduce HAE TrackR.