News from Central America and Caribbean

From Regional Patient Advocate Javier Santana

Over the last few months, I have had the privilege of continuing to strengthen HAEi’s work in Central America and the Caribbean, collaborating directly with patient group leaders, physicians, health authorities, and representatives of the pharmaceutical industry.

In Panama, I continued to work closely with HAE Panama’s board of directors, Dr. Olga Barrera, immunologist and advisor to the patient group, and the Ministry of Health (Dr. Cuevas, director of the Department of Rare Diseases), which ultimately approved and authorized the national distribution of the Treatment Guide for Hereditary Angioedema (HAE) in hospitals and emergency centers. The Ministry of Health will make a national announcement to present it to the medical community. Thanks to the efforts of HAE Panama, the country celebrated hae day :-) with educational activities, conferences, and the lighting of government buildings. New patients were also registered.

Access to medicines is a priority across my region, and I continue to have contact with CSL Bering representatives regarding the official registration process for the Berinert drug in Panama; they advise that significant progress has been made. For Puerto Rico, I met with representatives from CSL Bering and Kalvista to discuss plans and the availability of their medicines on the island.

A core activity for Regional Patient Advocates (RPAs) is supporting and advising Member Organizations (MOs) with their structure and governance. Recently in Costa Rica, I facilitated a virtual meeting to guide them through a reorganization and the election of a new Board of Directors, and how tools like HAEi Focal Point and HAEi Advocacy Academy can support their advocacy efforts. We have also been working on an effort to update the patient list, in collaboration with immunologists and HAEi, with the goal of establishing an official patient registry in the country. I’ve been able to provide direct guidance to patients regarding specialist physicians and, with the group, celebrated the publication of Tayra Corrales’ book, “Esta también soy yo,” in which she shares her life story as a patient with HAE. We continue to monitor the reduction in government purchases of the drug Berinert, and I met with doctors and pharmaceutical representatives to discuss the issue.

In the Dominican Republic, our focus is on legislative activities, and we support HAE Dominican Republic on the legislative process, seeking to include HAE in a new national law on rare diseases.

In my last update, I introduced Trinidad and Tobago as a new member country for HAEi. Since then, we have formally integrated the country as a new Member Organization (MO) and provided access to HAEi’s MO specialist tools and resources, like HAEi Advocacy Academy. We’ve guided Trinidad and Tobago on creating their website, social media platforms, and on how to identify new HAE patients in the country. I also connected them with an HAE-experienced physician who recently arrived in the country from the United Kingdom. I look forward to meeting with this doctor soon.

This period has been full of challenges, but also important achievements. I am convinced that the collaborative work between patients, physicians, governments, and organizations will continue to bear fruit for the benefit of all people living with HAE in Central America and the Caribbean.