Although there are some high incidence health problems, there are also others in which the opposite occurs. They are the ones that manifest themselves infrequently and it is even likely that you will never attend a case of this type. These are rare diseases and one of their biggest problems is the lack of research because there is not even an official census. In fact, in the case of Mexico the information is limited and only estimates are available and not concrete figures.
To offer a complete and official overview, the General Health Council (CSG) will carry out the first National Census of Patients with Rare Diseases in Mexico. It will take place from October 1, 2021 to January 15, 2022 and will provide for the first time information for the construction of a national registry that will be public.
Where will the record of each patient be?
During the first 2021 plenary session of the General Health Council, which took place on August 11, the first census was approved to be carried out virtually through the domain www.csg.gob.mx located on the official website of the CSG, with the highest levels of certification in personal data protection.
For the registration, the participants only need to have their Unique Population Registry Code (CURP), and data of the disease they suffer, from which the capture and identification of patients will be carried out.
Rare diseases, of unknown origin and little scientific evidence for diagnosis and treatment, have in common the danger of death or chronic disability, because they are often confused or associated with other more well-known conditions.
In article 224 of the General Health Law, rare diseases are defined as those that have a low incidence, that is, few cases occur in a year, and a low prevalence – few people suffer from them – of no more than five records per year. every 10 thousand inhabitants.
Most have genetic causes; however, 20 percent corresponds to immunodeficiencies, autoimmune diseases, and infections. Due to the degree of complexity, many of the patients are diagnosed until after five years and, in one of every five cases, after 10 or more years.
Who will participate in the rare disease census?
To coordinate efforts to address this problem and provide comprehensive care, in 2017 the Commission for the Analysis, Evaluation, Registration and Monitoring of Rare Diseases was created, currently made up of the heads of the Health Institute for Well-being (Insabi) and the Federal Commission for the Protection against Sanitary Risks (Cofepris), as representatives of the Ministry of Health.
Also participating are the Secretariats of National Defense (Sedena) and Navy (Semar), as well as the Mexican Institute of Social Security (IMSS); Institute of Security and Social Services of State Workers (Issste) and Petróleos Mexicanos (Pemex), and as permanent guests: the Undersecretariat of Prevention and Health Promotion and the Coordinating Commission of National Institutes of Health and High Specialty Hospitals ( CCINSHAE), among others.
On June 14, 2018, the Commission for the Analysis, Evaluation, Registration and Monitoring of Rare Diseases released the latest official list where it states that 20 rare diseases are documented.
This commission made up a group of experts for the early diagnosis of rare diseases, by strengthening the neonatal screening; improvement of reference and counter-reference criteria, as well as the consolidation of control measures in girls and boys for the early detection of possible genetic deficiencies.
The commission’s work also focuses on promoting guidelines for the integration of genetic counseling that prevent the appearance of new cases of rare diseases, including mucopolysaccharidosis, Gaucher disease, Turner syndrome, spina bifida, cystic fibrosis, histiocytosis, phenylketonuria, galactosemia, and homocystinuria.