In Mexico, the Universal Catalog of Health Services, Causes, only includes 20 of the 7,000 existing rare diseases, which is the equivalent of 0.29 percent of all these pathologies. This is a fact that María Magdalena Ortíz, counselor of the National Alliance for Rare Diseases.
The lack of specialists is one of the difficulties for patients with rare diseases
This expert has lamented the medical limitation and the delay in the timely diagnosis of patients, who spend up to five years without knowing their real health situation. Through a videoconference, she explained that “since the disease does not exist in the national health catalogue, patients are excluded from medical care, for which, in some cases, they pay up to one million pesos for therapies and treatments.
Another of the difficulties that patients with a rare disease face is the lack of specialists and medical personnel trained in these pathologies, as pointed out by Elena Escobar Cedillo, head of the National Network of Muscular Dystrophy Associations, who called the authorities of salud to update the Clinical Care Guide for Patients, as its latest changes date back to 2014.
The pandemic increased consultations by 500 percent
The specialists also warned that the COVID-19 pandemic in Mexico increased by 500 percent the consultations of patients with a rare disease, by increasing the request for daily medical attention from 10 to 60, explained Rocío Huerta, coordinator of Medical Services and Rehabilitation of the civil organization Apac.
What is clear is that in Mexico there is no registry of patients affected or who have died from a rare disease. However, beyond the registration and recognition of these conditions, training and medical updating must be reinforced; in addition to having more specialists in genetics, cardiology and neurology, among others, in order to reduce the problem of incomplete diagnoses and the late referral of patients, as the different specialists agreed.