The rare diseases in Latin America They are a health problem that is forgotten. Although there are millions of people affected, the majority are not treated or receive accurate treatment. The consequence is a noticeable decrease in their quality of life and leaves them at a disadvantage with the rest of the population.
In addition to the above, it is also necessary to emphasize that Most of these pathologies lack treatment. An outstanding debt for pharmaceutical companies is to develop new medications.
How many people with rare diseases are there in Latin America?
Regarding this problem, it is necessary to talk about its magnitude at the regional level. only in Latin America it is estimated that there are between 40 and 50 million people with rare diseases. This is speculation because there are no official records or statistics.
Rare diseases: Medical diagnosis can take up to 30 years
A new report published by Economist Impact and commissioned by AstraZeneca Latin America highlights the current panorama of the diagnosis, treatment and care of rare diseases in Latin America.
The work is titled One stripe at a time: raising awareness of rare diseases in Latin America and points out that 75% of patients with rare diseases in the region they lack a definitive diagnosis. It’s a statistic that points to significant challenges for patients.
Celebrities diagnosed with a rare disease
- Richard Burton – Hemophilia
- Bruce Willis – Frontotemporal dementia
- Alice Martineau – Cystic Fibrosis
- Celine Dion – Stiff Person Syndrome
- Morgan Hoffmann – Spinal muscular atrophy
- Missy Marlowe – Turner Syndrome
- Mark Lavery – Phenylketonuria
- Brad Pitt – Prosopagnosia
- Andy Richter – Homocystinuria
- Linda Hunt – Turner Syndrome
Rare diseases do not affect a minority
In the first instance, the term is used rare diseases to describe those who have a incidence of less than five cases per 10,000 inhabitants. At first it may seem that this is a problem that only affects a minority but that is not the case.
The biggest drawback is that There are between six thousand and eight thousand different rare diseases. With this in mind, adding all patients gives a total figure of more than 450 million people living with one in the world. Altogether it is a significant number.
A high mortality problem
The study led by Economist Impact highlighted that About 80% of these conditions are of genetic origin. While 75% manifest themselves during childhood, children from 0 to 5 years old are the most affected.
The above is relevant because the rare diseases have a significant impact on mortality. In fact, these types of pathologies are responsible for approximately 35% of deaths in the first year of life. While 30% of deaths occur before the age of 5.
How many rare diseases are there in Mexico?
The report also analyzes regional trends linked to access to treatments, health policies and reimbursement models that affect patients.
To date, disparities persist in guaranteeing optimal results for those living with rare diseases in Latin America. Therefore, it is essential to emphasize existing opportunities to increase awareness, strengthen policies, and address barriers to diagnosis and care.
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