Former first lady Michelle Bolsonaro (PL) assisted Rosana Valle (PL-SP) in drafting the bill; measure in force via ordinance 199/2014, from the Ministry of Health, can be overturned by the federal government
The federal deputy (PL-SP) filed the bill (4,997/2024) that makes permanent in Brazil the National Policy for Comprehensive Care for People with Rare Diseases. The proposal aims to establish by force of law a public standard that already exists in the country, but which, in the form of a decree (199/2014) of the Ministry of Health, can be overturned at any time by the Union. The former first lady (PL ) helped Rosana in preparing the article.
Once registered, the text will be evaluated by the Permanent Committees of the Chamber of Deputies and, if it has a favorable opinion, it will be voted on in the Plenary. With the measure in force in Brazil, definitively, there will be institutional guarantee for guidelines that focus on reducing mortality and morbidity and mortality, as well as improving the quality of life of people with rare diseases, through prevention actions , early detection, treatment, disability reduction and palliative care.
Far from precariousness via ordinance, the National Policy for Comprehensive Care for People with Rare Diseases will maintain a direct connection with priority thematic networks of the Unified Health System (), especially the Care Network for People with Chronic Illnesses; that of Persons with Disabilities; the Urgency and Emergency Network; Psychosocial Care; and the Health Care Network (RAS).
Rare diseases are those that affect up to 65 people in every 100 thousand individuals, that is, 1.3 citizens for every 2 thousand subjects, as highlighted by Rosana: “This proposal is in line with an existing standard, however fragile, because it can be overturned at any time by the federal government, harming many Brazilians and their families. We cannot take this risk.
With the approval of this bill, we will guarantee this public access to diagnostic and therapeutic means already available in the SUS and others that should be implemented. It will be law and must be complied with”, adds the congresswoman.
Michelle Bolsonaro
President of the National Executive of PL Mulher and activist in defense of people with disabilities and rare diseases, Michelle Bolsonaro helped Rosana in preparing the article. For the former first lady of the Republic, “rare diseases are chronic, progressive and degenerative; they threaten the life of those who have this condition; and alter the quality of life not only of patients, but of the entire family, causing pain and suffering for the rare and their caregivers. Therefore, greater attention is needed from public authorities.”
Affected
The World Health Organization () estimates that around 6% of the world’s population (around 480 million people) has one of the almost 8,000 diseases classified as rare. In Brazil, there are around 13 million citizens affected by these illnesses.
“Whether in diagnosis, treatment or clinical management, people with rare diseases face barriers in accessing specialized services and appropriate treatments. We need to have a policy of complete attention that does not run the risk of ending overnight, regardless of who is in charge of the country”, concludes Rosana.
Posted by Carolina Ferreira
