Hemolife Pereira, Pereira Technological University, Santa Fé Foundation, Bogotá, Colombia.
The Latin American net of Prophylaxis and Immune Tolerance (RED LAPI) was established in 2010 and comprises a group of physicians dedicated to improving the diagnosis, treatment and quality of life of haemophilia patients in Latin America. The countries represented at RED LAPI are: Argentina, Chile, Uruguay, Venezuela, Colombia, Peru, Honduras, Guatemala, Paraguay, Dominican Republic, Bolivia, Ecuador and Panama. Analysis of the provision of care for haemophilia patients suggests a lack of consistent care both across and within Latin America countries. While some patients receive prophylaxis and immune tolerance induction (ITI), others are not even properly diagnosed, due to variation in patient’s health insurance.
Few countries in Latin America have a national program that registers all patients’ information. Therefore, in many countries it is difficult to identify local, regional and national data regarding the number of diagnosed patients, type of hemophilia, severity, and the kind of treatment. With respect to patients with inhibitors, some countries rely on bypass agents for the treatment of bleeding episodes while a few are able to do ITI. This paper summarises available data obtained by a survey of RED LAPI members regarding the diagnosis and treatment of haemophilia in their countries, as well as the incidence of inhibitors and the treatments available to patients. Based on this analysis, the aim is to propose plans to improve the current situation of haemophilia patients in Latin America.
RED LAPI is a project initiated by Octapharma, which provides support for physicians’ travel and the organisation of meetings. The company has no input into the content of meetings. Participating physicians are: Dr Cesar Montaño, Hemolife Pereira, Pereira Technological University, Dr Mauricio Cortes, Santa Fé Foundation (Bogotá), Colombia; Dr Ana Bastardo and Dr Paula Pérez, Dr Héctor Nouel Joubert Hospital, Bolívar Branch Hemophilia National Center and Maracay Central Hospital, Aragua Branch Hemophilia National Center, Venezuela; Dr Maria Sol Cruz, Salta Hemophilia Foundation, Argentina; Dr Felipe Lemos, Pereira Rossell Hospital Center, Uruguay; Dr Felipe Espinoza, San Borja Arriarán Hospital, Chile; Dr Gloria Chumpitaz, Edgardo Rebagliatti Martins Hospital, Perú; Dr Armando Quiroz, IPS Paraguay Central Hospital; Dr Gerardo Rojas, Dr Mario Ortiz Suárez Children Hospital, Bolivia; Dr Rosa Nieves, Dr Robert Reid Cabra, Children Hospital, República Dominicana, Dr Jose Suárez, Francisco de Ycaza Bustamante Hospital, Ecuador; Dr Armando Peña, Hematology/Oncology Service, Pediatrics University School Hospital, Tegucigalpa DC, Honduras; Dr Oscar Avendaño, Medical Solution, Guatemala; Dr Belgica Moreno, Children Hospital, Panamá.
The Journal of Haemophilia Practice is published by Haemnet.
Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.