Leyla Camarillo-Blancarte
General Directorate of Epidemiology, Ministry of Health of Mexico
Title: The Challenge of Rare Diseases in Mexico
Biography
Biography: Leyla Camarillo-Blancarte
Abstract
The US defines a rare disease (RD) as one that affects fewer than 200,000 people or less than 1:2,000 people in Europe. Individual RDs affect less than 5-7 individuals in 10,000, but collectively affect 6%-8% of the global population. The incidence of RDs in Mexico varies according to the source, vr.gr. the Mexican Federation of Rare Diseases is 1:8,000newborns, the National Pediatric Institute of the Ministry of Health refers that is higher Ì´1:1,500newborns and only 3% get an early diagnsosis. The Mexican Organization of Rare Diseases states that there are 6million. The incidence rate (IR) of neural tube and craneofacial defects varies anually, 8.7, and 5.1 respectively in 2016 and, 3.5 and 7.3 in 2017; microcephaly´s IR was 0.95 and 2.6 in 2016-2017.
There are more than 640 disease registries in the Orphanet database and less than 150 RDs have a marketed drug. The Ministry of Health of Mexico has one federal registry specially for birth defects: “Epidemiological Surveillance System of Neural Tube and Craneofacial Defects” since 1989, and last year the undersecretariat Prevention and Health Promotion announced that there would be a specific registry for RDs. There are more information systems where birth defects are eventually notified.
In 2014 the EU health expenditure amounted to 9-11% of its GDP, for the OECD countries it was 6.6% and, in Mexico 2.7% for the 2006-2017 period.
The Mexican Health System is comprised by public and private health institutions headed by the Ministry of Health, there are only four complusory notifiable RDs in the newborn screening programme, but every health institution can provide a wider screening according to its own policies. In average, it takes more than 5 years to diagnose a RD and more to provide treatment despite research being conducted.