Despite the fact that attention to rare diseases has been promoted in recent years, especially through neonatal screening, the truth is that it is a matter that many overlook. Within this framework, the Second Virtual Forum was held. The care of rare diseases in Mexico, which was carried out in the Chamber of Deputies, where both legislators, doctors from prestigious health institutions and people from the pharmaceutical industry represented by the Mexican Association of Pharmaceutical Research Industries (AMIIF) participated.
In this second forum, the importance of considering these conditions was analyzed, in order to ensure that patients have comprehensive care, since only half of the country’s states, 16 in total, have at least one accredited hospital to treat rare diseases.
This space also had the objective of giving continuity to the work carried out a year ago, in addition to promoting the approval of the initiative that seeks to promote the accreditation of at least one hospital for each federal entity, for the care of patients with rare diseases ( ER) and, in this way, provide security and well-being to their families.
cream and cream
The deputies María Eugenia Hernández Pérez, Eunice Monzón García, Araceli Celestino Rosas, Gabriela Sodi Miranda and Roberto Briano Borunda participated. It was inaugurated by Deputy Emmanuel Reyes Carmona, President of the Health Commission, Dr. Jorge Adán Alegría Baños, Director of Care for High-Cost Diseases of the Health Institute for Well-being (Insabi), and Dr. Luis Carbajal Rodríguez, Chief from the Lysosomal-Rare and Degenerative Diseases Clinic of the National Institute of Pediatrics (INP).
Also exhibited were: Dr. Ángela Barrera, a surgeon at the Institute of Public Health (ISP) of the state of Guanajuato; Dr. Samuel Vilchis, from the Research Center for Access to Health; Dr. Alondra García, deputy director of Quality, of the Guerrero Health Secretariat; Alejandra Zamora, National Patient Coordinator, from Grupo Fabry México; and Daniela Escobar, a patient with a lysosomal storage disease; in addition to Karla Báez Ángeles, director of Access of the AMIIF.
It should be said that rare diseases are those of low prevalence, that is, they occur in less than five people per 10,000 inhabitants. Currently, the General Health Council (CSG) recognizes only 20 rare diseases for care in the public health sector in Mexico, while the World Health Organization (WHO) estimates that there are around 7,000 of them at global level. Based on this calculation, in our country there are more than seven million Mexicans with this type of illness.
The quality of life of the patient
In Mexico, the diagnosis and timely treatment of patients with rare diseases in Mexico continues to be a very important challenge, since the patient’s quality of life depends on it. It is important to say that this goes hand in hand with Article 4. Constitutional, which states that all Mexicans have the right to health, given which there is an urgent need to guarantee access in our country to all patients with orphan diseases.
Of course, a great restriction for patients to have their comprehensive treatment is the lack of accredited hospitals to provide the required care. To date, there are 16 states of the Mexican Republic -in other words, half the country- that do not have an accredited facility to care for patients with a low-prevalence disease, among which are lysosomal diseases, which it leaves patients residing in these federal entities in an obvious disadvantaged situation.
However, if the patient is diagnosed and receives appropriate treatment for their comorbidity, they can carry out normal activities, so having a timely diagnosis benefits the effectiveness of the treatment.
The missing states
The states without accredited hospitals are the following: Guerrero, is in the process of accreditation; Baja California, Baja California Sur, Campeche, Coahuila, Durango, Morelos, Nuevo León, Oaxaca, Querétaro, Quintana Roo, Sonora, Tabasco, Tlaxcala, Yucatán and Zacatecas.
In the same way, patients with rare diseases gave their testimony to sensitize the participating legislators about the situation that afflicts them every day, such as the fact that many of them are minors, like their relatives, have to make long journeys from the cities where even large cities are located with all the mobility problems that this implies. For example, there are patients who need to travel once a week from Guerrero to Mexico City, in order to receive the necessary attention from an accredited medical establishment.
A high economic cost
The foregoing not only represents a high economic cost for both patients and their families due to the expenses that this implies, in addition to running risks due to the insecurity of these routes, where they even risk their lives, due to possible accidents in these transfers. .
It is necessary to bring health care closer to all patients, regardless of their place of residence, as well as having the political will of state governments to agree to accredit at least one health facility or hospital.
By the way, a myth has been built around the hospital accreditation process, since it has been said that it is a highly technical process that requires various steps and many man hours, as well as specialized inputs, but this is not necessarily so. .
What happens when you turn 18?
In the particular case of rare diseases that are diagnosed at an early age, although financial coverage is guaranteed throughout childhood, to date there is no provision that guarantees continuity of treatment once the girl or boy reaches the age of adulthood. Therefore, in most cases when they turn 18, adolescents must be referred from a children’s hospital to an adult hospital, where the same care protocol that they had insured is no longer available.
In conclusion, it is necessary to highlight the great need for care that patients with rare diseases have in Mexico, since in addition to the fact that they are usually catastrophic, leaving a family without financial resources, the health sector is not capable of attending to them in all entities, because they lack accreditations for that to happen. Another issue is that people with this type of condition are no longer insured when they reach the age of majority, which is why there is a large legal loophole to address.
More financial resources are needed, without a doubt, but also great political will, both to achieve the accreditation of at least one hospital in the remaining 16 states, as well as to increase the number of conditions that should be treated by the public health system. .
Stethoscope
Now that World Obesity Day is coming, it should be noted that in 2022 Mexico held the dishonorable fifth place in obesity in the world and it is estimated that the figure will increase to 35 million adults for the next decade, according to the Federation World Obesity. This is a topic that we will talk about in the next installment.