Mexico rare disease patients report critical medicine shortages

Patients, families, and medical specialists in Mexico are denouncing a persistent shortage of specialized medications for rare diseases. While official figures from the Mexican Social Security Institute (IMSS) report general drug supplies between 95% and 98%, experts argue these statistics do not reflect the reality for rare disease treatments, which are often specialized, required permanently, and difficult to access outside major cities.

Medical geneticist Silvina Contreras Capetillo noted that while resources may exist, there is a critical lack of accurate registries to track available treatments. She estimated that coverage for rare diseases in Mexico may be below 5%. The shortage specifically impacts Enzyme Replacement Therapy (TRE), which is vital for managing conditions such as Morquio Syndrome and Gaucher Disease. Without these therapies, patients face irreversible health damage, including bone deformities and organ enlargement.

Reports of shortages have emerged from multiple states, including Puebla, Veracruz, Yucatán, Guanajuato, and Tamaulipas. Patients have reported going months or even years without necessary infusions, leading to severe clinical setbacks and decreased quality of life.