News from Central America and Caribbean

From Regional Patient Advocate Javier Santana

2024 Highlights

The first HAEi Regional Conference Americas was held in Panama City, Panama (in my region), which motivated and inspired my region’s HAE groups towards achieving their goals in each country.

Specific highlights include:

• Post-conference, the newly elected Panama Government has been more open to addressing the needs of the HAE patient group.
• The Dominican Republic patient group became a government-registered entity. They can now work as a legally constituted group in their country.
• The authorities in Costa Rica approved another HAE therapy, allowing patients to have medication at home to treat their attacks. 2 modern HAE medications have been approved in Costa Rica in less than a year.
• The first HAE Law was finally approved in Puerto Rico. The Law mandates that Hereditary Angioedema is included within the Government’s Catastrophic Diseases Law, which means HAE must be included in Medical Schools, the recognition of HAE Day, that public and private health plans include treatments for HAE in their coverage, and that hospitals and emergency rooms have treatment guides available for HAE.

Additionally, the 2024 HAEi Global Leadership Workshop and the ACARE Global Angioedema Forum 2024 included great representation from countries in my region.

Hopes for 2025

I will continue to work hard and enthusiastically to support the patient groups in my region to ensure that more countries have access to treatments for HAE. In addition, we will use our resources to address issues in countries where doctors still do not recognize HAE as a disease, there are no modern treatments for HAE, and patients feel unprotected by medical representatives.