From Regional Patient Advocate Javier Santana
In Central America and the Caribbean, every day, there are more doctors interested in learning about Hereditary Angioedema (HAE) and how to help patients in their respective countries.
New doctors in El Salvador and Costa Rica have been in communication with HAEi and me to find a way to promote events aimed at educating more about HAE.
In communications with health officials of the Government of Costa Rica, we were informed about their plan to purchase and acquire medications for patients with HAE in Costa Rica. There would be two medications, Berinert and icatibant. This news has doctors and HAE patients in Chile on alert to initiate their requests.
For the first time, patient groups from the Dominican Republic and Cuba met to find a way to unite efforts and support for patients with HAE in both countries. Both Cuba and the Dominican Republic have clinically diagnosed HAE patients. Although it is not always available in Cuba, doctors use Berinert in cases of emergency, such as attacks on the face and throat. Other conventional therapies are used to treat attacks.
In Panama, the group of HAE patients and Dr. Olga Melcina, the group’s medical advisor, continue to meet with government officials to seek approval of new treatments in their country and that they are available for patients with low economic resources. Although Panama has one HAE medication, it is not accessible to everyone.
In 2024, the first HAEi regional conference of the Americas will be held in Panama. All groups of patients with HAE from the countries of Latin America, Central America and the Caribbean, the United States, and Canada will participate. The patients in the region and their leaders are excited for the moment when they can share experiences with other patients from nearby countries, meet other group leaders, hear about new HAEi strategies and tools, and learn what medical specialists from around the world have to say about the issue of HAE and the progress achieved. It will be a special and unique event in the region. For more information about it, look at https://americas.haei.org/
