From Regional Patient Advocate Javier Santana
During the 2024 HAEi Global Leadership Workshop (GLW), patients from my region – Central America and Caribbean – were able to share ideas and strategies with patients and leaders from other countries and listen to the different talks and experiences shared on the main stage by healthcare professionals, other patients, and HAEi representatives.
In the breakout session, group leaders from the countries I support talked about the current HAE situation in their countries, what the issues are, and how they are working on overcoming them. Additionally, leaders exchanged ideas and strategies on how they can support each other and work together to achieve their future goals.
I also used the breakout to explain in more detail how the different programs and tools HAEi offers work, including HAEi Advocacy Academy, HAEi Connect, HAE TrackR, HAEi FocalPoint, and the new HAEi Travel and Relocation Guide.
During the main program, Tayra Corrales from Costa Rica and I gave a talk to the audience about Strategies for Engaging Government and Health Ministries. The authorities in Costa Rica recently approved two medications for HAE thanks to efforts made by patients with HAE, non-profit organizations, and HAEi. During the talk, Tayra Corrales spoke about their experiences during the authorization and reimbursement process. I also gave a talk on advocating for the creation or promotion of laws on HAE to guarantee the right to access treatments, create more awareness about HAE, and protect patients’ rights. You can read more about these talks in ‘Getting political to get results’ and see the “The power of the law – to help your advocacy efforts” feature in Global Perspectives July 2024.
Patients were grateful for the workshops offered and the access to pharmaceutical representatives who could speak with them directly to answer their questions or concerns about different HAE medications currently available globally.
Physicians from my region who attended the ACARE Global Angioedema Forum 2024 (GAF) also expressed their appreciation for the information and research shared by the expert HAE speakers. Many of them have shown great interest in certifying and promoting the creation of ACARE Centers in their respective countries.
I hope all attendees enjoyed the GLW and GAF, and I look forward to seeing you at the next conference.