Mexico Needs to Prioritize Research on Rare Diseases

Rare Disease Day is observed on the last day of every February to raise awareness about these illnesses. Despite affecting about 8 million people in Mexico, there is little data about their prevalence.

A rare disease is an illness suffered by no more than five people in 10,000 inhabitants, according to Mexico’s General Law of Health. In 2018, Mexico’s General Health Council recognized 20 rare diseases affecting Mexicans, including Turner Syndrome, Hemophilia, Spina Bifida and Cystic Fibrosis. However, over 7,000 exist globally.

The current administration claims to be committed to ensuring access to free health services and treatment to those who require them. However, there is an urgent need for updated data to accurately map rare diseases in the country. In Sep. 2021, Mexico launched a National Census of Rare Diseases that aimed to collect information regarding their prevalence to improve the treatment of patients, according to Cristobal Thompson, Executive Director of the AMIIF, as reported by MBN. However, the census was quietly called off after its first month.

There has not been an official statement informing of the exact date the census will resume. The lack of such an instrument is a setback for Mexico’s healthcare sector, which cannot research the known rare diseases nor identify undiagnosed ones. Due to their rarity, the limited data pertaining to them has been a constant obstacle for clinical development that could benefit those who are fighting them.

In 2018, Federal Commissioner Julio Sánchez assured that "the health authority has issued records for 310 innovative drugs that are already marketed in Mexico, of which 68 correspond to recognitions granted to so-called orphan drugs that are used to treat rare diseases, this figure represents about 22 percent." Regardless of the hope that this statement provides, there is still not enough scientific knowledge on pharmaceutical treatments for all the rare diseases that exist, as stated by the Bulletin 1-2020 on Orphan Drugs and Rare Diseases of Mexico’s City Government.

This scenario evidences the need to prioritize rare diseases in Mexico’s health agenda to strengthen strategies for detection and treatment.