The Mexican Association of Pharmaceutical Industry Research (AMIIF) has reaffirmed its commitment to collaborate with the government and other entities to guarantee access to orphan drugs in the healthcare system. In a country where between 8 and 10 million people suffer from rare diseases, late diagnosis has become a public health crisis.
"We recognize that behind every diagnosis there is a story of courage. A call to action to improve medical care in Mexico," stated Dr. Karla Báez, Director of Access to Innovation at AMIIF. The delay in diagnosis not only exacerbates the burden of the disease but also profoundly affects the physical and mental health of patients, who are often forced to consult multiple specialists without obtaining clear answers.
Rare diseases, which affect fewer than five people per 10,000 inhabitants, generate severe health and social consequences, including disability and decreased quality of life. Therefore, a comprehensive approach that addresses both the physical aspects and the emotional well-being of patients is essential. The World Health Organization (WHO) highlights the importance of a multidisciplinary approach that includes pharmacological, psychological, and physical rehabilitation aspects.
According to Dr. Báez, in Mexico, patients with rare diseases must wait between 2 and 8 years to receive an adequate diagnosis. It is essential for doctors to be trained to identify symptoms of these diseases and refer patients to specialized care levels. Additionally, improving access to diagnostic tests and ensuring complete support, from genetic counseling to treatment and rehabilitation, are key aspects in the care of these diseases.
Dr. Báez emphasizes that 80% of rare diseases have a genetic origin, highlighting the urgency for coordinated and specialized medical care. In Mexico, the General Health Council recognizes around 5,500 rare diseases, many of which are chronic and without cure. AMIIF has proposed a comprehensive plan that includes collaboration from all sectors, such as government, academia, civil society, and the private initiative, to effectively address these issues.
