Central America and Caribbean
Javier Santana serves as HAEi’s Regional Patient Advocate for Central America and Caribbean. He started at HAEi in 2017 as a representative of the Latin American region. He continues helping existing organizations grow and facilitating the formation of patient groups where none exist. Javier applies his 20 years of communications and government affairs experience in helping Member Organizations mount effective advocacy campaigns that force health ministries to provide access to life saving HAE medicines.
Contact Javier by email: gro.ieah@anatnas.j
2023 Highlights and Hopes for 2024
In the December issue of Global Perspectives, each of our Regional Patient Advocates (RPAs) has selected a few of the most important moments and successes from the past year, as well as their hopes for 2024 for their region.
Here you have the highlights from Javier – and his hopes for 2024:
We hope to continue identifying patients in countries in the region and to identifying doctors who can help them. We want to work together; patients, doctors, RPA, and HAEi.
We will continue with the efforts towards governments and pharmaceutical representatives so that HAE treatments are secured in countries where they have not yet arrived.
We will promote more programs to increase HAE awareness.
– Javier Santana
News from Global Perspectives 2023
Published in Global Perspectives, October 2023
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/
Published in Global Perspectives, June 2023
From Regional Patient Advocate Javier Santana
During recent months, many of the patient groups in the Central America and Caribbean region have worked hard to gain access to HAE drugs in their countries. Not least, patients from Costa Rica and Panama have held multiple meetings with government representatives seeking to finally achieve the acquisition of treatments.
Due to the behavior of the government leaders of various countries, a new strategy has been promoted in the Central America and Caribbean region for representatives and legislators to promote laws aimed at protecting people with HAE and guaranteeing the purchase of medicines for patients. Leaders of some patient groups have acquired laws from other countries around the world to share with representatives of their legislatures to draft and create laws in favor of HAE and direct governments to protect the right to receive medicines and fair treatment for people with HAE.
New information has emerged in the region about the distribution of medications for HAE in some countries. Representatives of many companies that distribute HAE medicines in Latin America have notified that, for the first time, efforts to bring the drugs to some of this region’s countries have begun.
