In Mexico, between seven and ten million people suffer from rare diseases

Given their low incidence, there is little information on these disorders, and there is no official record of the people who suffer from them, which adds to the costly treatments
Anesthesiologist make an injection of a medicine intravenously – Photo: Vitality Zubritsky/EL UNIVERSAL
09/11/2017
14:56
Notimex
Mexico City
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In Mexico, between seven and ten million people suffer from rare diseases, according to David Peña, President of the Mexican Federation for Rare Diseases (Federación Mexicana de Enfermedades Raras abbreviated Femexer).

At a press conference, David Peña emphasized the importance of raising awareness on rare diseases by influencing those who make decisions in Mexico's medical field to ensure that people who are affected by rare diseases will receive a proper insurance level of coverage in public health institutions.

A disease is defined as rare when it has a low incidence in the population affecting five out of every ten thousand people in the world. There are about seven thousand different types of rare diseases affecting 7% of the world population, unfortunately only 5% have a specific treatment.

Moreover, given their low incidence, there is little information on rare diseases, and there is no official record of the people who suffer from them, which adds to the costly treatments.

For example, the hereditary angioedema (a disorder characterized by recurrent episodes of severe swelling or angioedema) represents an annual cost that can reach up to MXN$ 5 million in terms of medical treatments. Hereditary angioedema can lead to death if those affected by the disease do not have the proper medication in a crisis. This disorder affects approximately one in 50,000 people.

Moreover, in half of the registered cases of rare diseases, the disorders begin in the early childhood, yet in most cases, the average time between the first symptoms to the specific diagnosis reaches five years, while one out of five cases can reach up to 10 years.

femexer.jpg
Photo: Taken from Femexer website

Among some of the consequences of not having a proper diagnosis, Femexer highlighted inadequate treatments (26.7%) and disease aggravation (26.8%).

It should be noted that 80% of rare diseases are genetic, so in a single family, there may be more than one member affected by the disorder.

David Peña concluded that Mexico's authorities have approved a minimum amount of medication to treat those who suffer from these conditions recently, yet, every person affected should have the right to receive the proper treatment and medication.

sg

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