Rare Diseases Affect 10 Million Mexicans: Health Commission

Rare diseases affect between 8 million and 10 million people in Mexico, presenting a public health challenge that requires comprehensive legal frameworks to ensure access to care, treatment and patient protection, according to Deputy Éctor Jaime Ramírez Barba, Minister of the Health Commission.

“Today we are still struggling in Congress to approve expanded metabolic screening tests, one of the key tools related to cystic fibrosis,” said Ramírez during the National Forum on Rare Respiratory Diseases: Cystic Fibrosis 2025. The legislator emphasized that the absence of a national registry and the limited political will hinder effective policy implementation.

The remarks were made in the context of World Cystic Fibrosis Day, observed each year on Sept. 8. Ramírez noted that challenges persist in Mexico, including fragmented health coverage, restricted access to specialized care, diagnostic delays averaging between four and eight years, and insufficient coordination between regulatory approval and integration into the health system.

Ramírez announced that he plans to publish an article alongside researchers from the National Medical Center of the Mexican Social Security Institute, analyzing the evolution of rare disease legislation in the country. He highlighted that while some progress has been made, such as reforms in 2012 that defined “orphan drugs” in the General Health Law and later regulatory measures by COFEPRIS and the Ministry of Health, implementation remains slow compared with regional counterparts. Countries like Brazil and Colombia, he said, have advanced further with integrated care models and national registries.

Mexico currently faces a shortage of specialists, with only one medical geneticist available per 520,000 residents, as well as a decline in approval rates for new medicines in recent years. To address these gaps, Ramírez outlined priorities including the creation of a comprehensive national registry, improved interinstitutional coordination, expansion of specialized care networks and the development of sustainable financing mechanisms for high-cost treatments. His party is proposing to strengthen the National Health Fund for Well-Being and establish a public fund accessible to all institutions, regardless of the health provider involved.

Arlette Flores, Director, Hagamos Visible lo Invisible, said that equitable access to health care is critical for all patients, particularly those with cystic fibrosis. She explained that the disease is multi-organ, affecting the lungs, digestive system, pancreas and liver, and can be fatal if not diagnosed in time.