- The Ministry of Health only officially recognizes 20 rare diseases in Mexico.
- The General Health Council submitted a request to add another 3 rare diseases to the list.
- To date there is no official registry but it is estimated that there are between 4 million and 7 million patients with this type of pathology in our country.
The number of health problems that exist is abysmal and impossible to calculate. While some are quite frequent, there are also others with a very low incidence. Within this second category are rare diseases and to date there are only 20 that are officially recognized in Mexico.
First it is necessary to start with the official definitions. According to the World Health Organization (WHO) a rare disease occurs in no more than five cases per 10,000 inhabitants. They are also characterized by having a high mortality rate, but a low or very low prevalence.
Among the drawbacks, this type of pathology behaves with a very severe chronic evolution, with multiple motor, sensory and cognitive deficiencies. Therefore they usually present a high level of clinical complexity that makes its diagnosis and recognition difficult.
With this in mind, the novelty is that the General Health Council (CSG) reactivated the Commission for Rare Diseases, which had not evaluated applications since 2018, and had a restrictive perspective on access to health. The new focus is the universality and free treatment for these conditions.
New rare diseases that could be recognized in Mexico
It was also announced that in the next session the CSG plenary session will review whether the inclusion of three rare diseases for their official recognition in Mexico. It’s about the unspecified heredofamilial amyloidosis, Duchenne muscular dystrophy and spinal muscular atrophy.
For its part, another of the CSG’s objectives is to work to reduce the backlog of issues and supplies for health pending evaluation by the committees. For example, it ruled 60 of 99 supplies, and the remaining 39 will be evaluated before June of this year.
In addition, the abandoned work of updating technical protocols for the approval of high-cost treatments, such as breast cancer, chronic kidney disease, hepatitis C and acute myocardial infarction, which will be presented for approval at the next plenary session of the Board, was resumed. CSG.
Lists with the only rare diseases recognized in Mexico
Although there is no official patient registry, it is estimated that there could be between four million 550 thousand and up to more than seven million 670 thousand patients with at least one rare disease. While only five percent of these types of conditions have an approved treatment option.
For its part, the WHO mentions that there are thousands of problems of this type. Despite the above, the Ministry of Health (SSa) recognizes 20 rare diseases in Mexico.
- Mucopolisacaridosis I Hurler
- Mucopolisacaridosis II Hurler
- Mucopolysaccharidosis IV Morquio
- Mucopolisacaridosis VI Maroteaux-Lamy
- Type I Gaucher disease
- Type II Gaucher disease
- Type III Gaucher disease
- Fabry’s disease
- Pompe disease
- turner syndrome
- spina bifida
- Cystic fibrosis
- Hemophilia
- Histiocitosis
- Congenital hypothyroidism
- Phenylketonuria
- Galactosemia
- Congenital Adrenal Hyperplasia
- G6PD deficiency, Glucose 6 Phosphate Dehydrogenase
- Homocystinuria
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