Rare disease patients decry drug shortages in Mexico despite official supply claims

Patients and specialists in Mexico are sounding the alarm over a continued scarcity of medications for rare diseases. This situation persists even as official reports claim drug availability stands between 95% and 98%.

Experts caution that the reported recovery in overall drug supply by the Mexican Social Security Institute (IMSS) does not translate to better access for rare disease treatments. These often require specialized, lifelong medication and are difficult to obtain outside large urban centers.

Silvina Contreras, a genetics specialist, highlighted that while Mexico possesses adequate resources, a lack of precise registries for available treatments and medications hinders progress. She also pointed to accessibility issues, forcing patients to travel to Mexico City for treatment.

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I have patients who have refused treatment because they had to travel to Mexico City to take it.

"I have patients who have refused treatment because they had to travel to Mexico City to take it," she stated. Contreras warned that interrupting these lifelong treatments can accelerate disease progression and cause irreversible harm.

Renata, a 15-year-old with Morquio syndrome, has gone five months without her enzyme replacement therapy at the Hospital for the Child of Puebla. Her father, René Coxca, reported that this interruption has led to joint pain, breathing difficulties, and hearing loss in the teenager. "What you have gained, you lose little by little," Renata said, describing the impact of the missed treatment. An estimated eight million people in Mexico, about 6% of the population, live with a rare disease.

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What you have gained, you lose little by little.