From Javier Santana, regional patient advocate, Central America and the Caribbean
Javier is planning a trip to Panama to meet with the patient group and offer a workshop on how to create awareness events, media interviewing tips, and addressing government issues.
In February 2019 HAE Costa Rica held the first conference on HAE in the Medical Faculty of the University of Costa Rica. Attendees and speakers included medical professors, Costa Rican allergist specialists, HAE patients, government representatives, as well as medical students.
During the event, several patients described their experiences with HAE attacks, hospital misdiagnosis, failure in treatments, and the lack of effective therapies. Doctors discussed the disease state, symptoms and triggers, as well as the need for effective treatments. As a direct result of the participation of the Deputy Minister of Health of Costa Rica, the State Hospital was ordered to initiate/perform HAE relevant testing to identify patients with HAE.
Furthermore, Javier has been talking with several medical specialists to identify more HAE patients. He has also met with the new head of HAE Costa Rica and with several patients to discuss local strategies. Most recently, a patient contacted Javier through the new Facebook group, and he helped with contact with HAE Costa Rica.
The new head of HAE Costa Rica is Angie Leitón. She can be reached at email@example.com and +506 8553 5295.
Javier has been helping HAE El Salvador with collecting the information needed for a national website under the HAEi umbrella. Additionally, he has supported in the process of applying to attend the Global Youth Advocacy Program taking place in Atlanta, USA this summer. Javier has also provided HAE El Salvador with informative and promotional material in Spanish to share with patients and doctors.
Javier has been in contact with a Cuban who is both doctor and HAE patient. He already knows of some other HAE patients in the country – and he is willing to lead a national organization in Cuba, identify more patients, educate about the disease, and identify processes needed to facilitate access to treatments in Cuba. With this point-of-contact in place Cuba has been added to the HAEi world map.
Together with a doctor from Puerto Rico Javier is planning on visiting doctors in the Dominican Republic to identify HAE patients and help in the diagnosis and treatment process.