Keywords
narcolepsy - participatory medicine - law - treatment - Brazil
Introduction: Brazil lacks information about narcolepsy from both a scientific and epidemiological
perspective. Considering the worldwide prevalence (25 to 50 individuals per 100,000),
it is estimated that there are between 50-100,000 people with narcolepsy throughout
Brazil, the majority of whom are still undiagnosed. The invisibility of Brazilian
patients with narcolepsy is a factor that worsens the social impact of the disease,
since issues such as legal rights and public policies for access to diagnosis and
treatment are not discussed. This can be seen in the lack of national statistics on
narcolepsy in the Brazilian government databases, and there is not even a Clinical
Protocol and Treatment Guidelines (CPTG) for such conditions.
Objective: To gather information on the reality of narcolepsy in Brazil, outlining an overview
of access to diagnosis and treatment, research already conducted, and legal advances
achieved so far.
Methods: The Hypersomnia Research Center of HUPE-UERJ (CPH-HUPE-UERJ) in partnership with
representatives of the Brazilian Association of Narcolepsy and Idiopathic Hypersomnia
(ABRANHI) gathered information on existing laws and legal precedents regarding the
disease, as well as on a research conducted on narcolepsy in the Brazilian population
over the last 30 years, conducted in four databases (Pubmed, LILACS, Scopus, and Embase)
with the descriptors “Brazil” or “Brazilian” or “South America” and “narcolepsy”,
in English and Portuguese, from 01/01/1994 to 08/21/2024. Recent advances in the visibility
of narcolepsy were also reported, with the joint actions of CPH-HUPE-UERJ and ABRANHI
in the Participatory Medicine model.
Results: After excluding duplicate articles and conference proceedings, 76 papers were included.
Of the original articles, only three involved genetic research. In the area of law,
there is a Technical Note prepared by NatJus and elements for understanding that narcolepsy
is a hidden disability. Five clinical cases of patients who achieved equal rights
to people with disabilities will be reported, in addition to the experience with the
importation of medications such as sodium oxybate, pitolisant and solriamfetol, and
the initial impression of patients with such medications.
Conclusion: A national policy of attention and care for people with primary hypersomnias is urgently
needed. Participatory medicine has proven useful for optimizing this process.
