2023-08-11 22:00:07
According to the WHO, rare diseases are all those that occur in less than five people per 10,000 inhabitants.
The average time to reach a final diagnosis can vary from 5 to 10 years and require reviews by more than 10 doctors.
Worldwide, it is estimated that there are between 6,000 and 8,000 pathologies of this type, although in Mexico only the existence of 23 is recognized.
The list of health problems is endless and new ones appear constantly. While some are quite frequent, there are also others with a minimal incidence. Within this second category are rare diseases and one of their main adversities is that there are very few hospitals prepared for their care.
With this in mind, there are pathologies such as cancer and cardiovascular disease that occupy the main causes of mortality on the planet. In both cases, patients have at their disposal a wide variety of alternatives to which they can turn.
What are rare diseases?
According to the World Health Organization (WHO) are all those that occur in less than five people per 10,000 inhabitants. If all patients are grouped together, it is estimated that there are 350 million individuals with a problem of this type.
In addition, it is estimated that there are currently between six thousand and eight thousand pathologies that fall into this category in the world. While in the case of Mexico the General Health Council (CSG) it only acknowledges the existence of 23.
Mexico lacks hospitals prepared to treat rare diseases
The Permanent Commission of the Federal Legislative Power in the Chamber of Deputies approved on August 8 a Point of Agreement that urges all states of the Mexican Republic to have at least one accredited hospital to care for rare diseases. Those who lack hospitals of this type are:
Baja California Baja California Sur Campeche Coahuila Durango Guerrero Morelos Nuevo León Oaxaca Querétaro Quintana Roo San Luis Potosí Tlaxcala Yucatán Zacatecas
Given the above, the population of the mentioned states must move to other entities to be attended. While the other alternative is to request the services of private hospitals, although most families do not have sufficient financial resources.
Said Point of Agreement also exhorts the Coordinating Commission of National Institutes of Health and High Specialty Hospitals and to the health secretariats of various federal entities to promote the process of accreditation of medical establishments for the care of patients with rare diseases.
“We have just taken an important step in favor of patients with lysosomal diseases and we hope that they will soon be able to receive care in hospitals close to their towns and thus prevent them from traveling to other states to receive treatment, which represents economic wear and tear. , physical and emotional. Having an accredited hospital nearby will have a positive and significant impact on the inequality gap that our country suffers,” said federal deputy María Eugenia Hernández Pérez.
In this framework, it is expected that, in the next legislative period, which begins on September 1, 2023, the Bill will be discussed and approved to guarantee that each federal entity has at least one hospital accredited for the care of rare diseases. .
Diagnosis of rare diseases
It is estimated that 80% of rare diseases have a genetic origin. To date, 50% affects the child population and 30% of patients diagnosed die before reaching five years of age.
The average time to reach a final diagnosis can vary from 5 to 10 years (30%) and require reviews by more than 10 doctors (20%). “Rare” diseases not only affect diagnosed people, but also their families, friends, caregivers and the whole of society.
Also read:
These are the 2 most common rare diseases in women
Rare Diseases: 1 in 15 Mexicans could have one and not know it
New rare diseases recognized in Mexico: 3 added to the official catalog
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