Tell us a little about yourself
I’m Javier Santana, I live in Puerto Rico, and in 2016 I became the Regional Patient Advocate (RPA) for HAEi in Central America & Caribbean. In addition, I have been a part of special projects for HAEA in the USA and Puerto Rico. At the same time, I have my own communications company where I work as a consultant in public and legislative policies and government.
Tell us a little about your region
My region is very diverse, with different cultures and languages. In many countries the existence of hereditary angioedema (HAE) is unknown, so our work focuses on raising awareness of HAE, identifying patients who have been misdiagnosed, and to help these patients know more about HAE.
What are you most proud of being able to do for the countries in your region?
HAEi has given me the opportunity to work for the welfare and rights of HAE patients in my region. It has been one of the most positive experiences in my professional life. Being able to help patients on the difficult path of requesting more resources, treatments, understanding their illness, and fighting for a better quality of life for them motivates me to continue working hard. Knowing each story, each different situation in each country, and helping patients navigate these individual situations fills me with pride and gives me energy to continue working.
What changes have happened for people with HAE in your region whilst you have been an RPA?
When I was assigned as RPA for the Central America and Caribbean region in 2018, there were only two Member Organisations (MOs) in the region. Today, thanks to the hard work of HAEi, the group leaders in each country and the patients, today there are five additional MOs, and we continue to identify patients without local representation.
What Next Steps will you be taking as an RPA to support your region?
One of the steps that I am taking in my region is to help the MOs to obtain access to treatment in their countries. That is my first goal.
Achieving access to treatment for all patients in the Central American and Caribbean region is a big goal.
Another step I’m taking is to support MOs to start using HAEi Connect and the database system it provides. Additionally, we will strive to ensure all MOs use the HAEi web hosting service to help other new patients know about the existence of other patients and medical specialists in their countries.
Fundamentally we aim to strengthen the HAE patient community in the region.