On Apr. 11, President Enrique Peña Nieto declared in the Official Federal Journal that the last February of each year would now be known as “National Day of Rare Diseases”. This decision came amid increased scrutiny of rare diseases among health organizations IMSS, ISSSTE and Seguro Popular.
The Dictum to Reinforce the Campaigns and Actions to Prevent, Diagnose and Survey Rare Diseases in Mexico published by the Ministry of Health says that the way rare diseases are defined changes from one country to another, as the genetic and consanguinity conditions vary from place to place.
For this reason, in 2017 the Commission for the Analysis, Evaluation, Registration and Monitoring of Rare Diseases (CAERSER) was created in Mexico by the General Health Council to better manage the procedures and the criteria of the registration and surveillance of the diseases that are considered rare in Mexico.
In 2017, the General Health Council updated a list with 14 rare diseases that are prevalent in Mexico and between 2012 and 2017, the Federal Commission for Protection against Health Risks (COFEPRIS) authorized the registration for 54 orphan drugs. The World Health Organization (WHO) says the medical expertise is scarce and the fragmented knowledge on RDs hinders the creation of networks that provide opportunities to train health workers on the topic. So WHO made a call to the international community to declare the “National Rare Diseases” to improve the access to diagnosis and treatment for people who suffer this condition.
The Ministry of Health estimates around 8 million people in Mexico live with a rare disease, which represents around 6.5 percent of the total population. It is also estimated that exist around 7 thousand types of are diseases in the world and Mexico has prevalence of at least 14 types such as phenylketonuria, cystic fibrosis, hemophilia, Fabry Disease and Turner Syndrome, among others. Since 1973, there have been efforts from the government to bring solutions to the population through the health system.
According to Orphanet, it is necessary to incentivize scientific knowledge for doctors, researchers and policy makers on rare diseases because until very recently there was hardly any information available to start a treatment.
Also, the WHO emphasize the need for creating dialogue and networks between different actors in society and the medical industry such as regulators, insurers, pharmaceutical companies and patient groups to promote sustainable access to medicines and orphan drugs.
Here is list by FEMEXER of some of the organizations in Mexico who advocate on the cause:
- Mexican Center for the Classification of Diseases and Collaborating Center for the Family of International Classifications of WHO in Mexico (CEMECE).
- The Mexican Organization for Rare Disorders (OMER)
- Mexican Federation of Rare Diseases (FEMEXER)
- Make a Wish Foundation Mexico
- Mexican Patients with Hemolytic Anemias and Iron Overload (AMPAHSH)
- Association of Patients with Thyroid Cancer Mexico (AMeCat)
- Foundation of Families with Amyloidosis in Mexico (FFAM)
- Mexican Association of Hereditary Angioedema
- Ataxia Mexico (ATAMEX)
- Friends with Neurofibromatosis Mexico (ANFM)
Industry Analyst and Journalist at Mexico Business Publishing