The Brazilian Ministry of Health reported, when commemorating, this Tuesday, February 28, the World Day for Rare Diseases that close to 13 million Brazilians face strange ailments and there is no specific treatment for 95% of these ailments.
The news agency of the Brazilian Legislative Senate He pointed out in a press release that the Parliament of the South American country, through various initiatives, seeks to help those who suffer from these diseases through public hearings, the creation of legislative subcommittees and the presentation of various projects.
Rare diseases are defined by the reduced number of people affected: up to 65 individuals per 100,000 people, according to the criteria adopted in Brazil.
According to the World Health Organization (WHO), these conditions are characterized by a wide diversity of signs and symptoms, which vary from disease to disease, as well as from person to person affected by the same condition.
Mara Gabrilli, a Brazilian senator, denounced that exclusion is the most common in the case of rare diseases, collects Latin Press.
World Rare Disease Day
This Tuesday marks the ‘World Day for Rare Diseases’ that arose to coordinate international organizations and cooperate throughout the world in search of equal social opportunities, medical care and access to diagnoses and therapies for those who suffer from a rare disease.
The creation of the date dates back to 2008, from when it seeks to develop an international, global and diverse community, but with the same purpose.
From the United Nations, on December 16, 2021, the first resolution from the story on ‘Meeting the challenges of people living with a rare disease and their families’, recognizing the need to promote and protect the human rights of all people, including the estimated 300 million people living with a disease rare all over the world.
It is worth noting that rare diseases encompass between 7,000 and 8,000 types and among the best known are: multiple sclerosis, hemophilia, neuromyelitis optica, autism, acromegaly, Cushing’s disease, autoimmune thyroiditis, Addison’s disease, hypopituitarism, Fanconi anemia, vascular dementia, Hodgkin’s disease, encephalitis, cystic fibrosis, and hyperhidrosis.
Majority in Brazil does not know the suffering of millions
Gabrilli pointed out the widespread ignorance in Brazilian society regarding the reality of millions of his compatriots suffering from one of the so-called ‘rare diseases’. He stressed that these patients do not have access to early diagnosis, adequate and multidisciplinary treatment, in addition to medicines and correct and quality information.
It is worth noting that the project that deals with the National Policy for Rare Diseases was modified in the Senate and returned to the Chamber of Deputies in 2018 and the legislator from the South American country said that “there is a lack of political will for this proposal to be processed again.”
He also indicated that the aforementioned “National Policy” to face the scourge of rare diseases is very relevant and assured that the project that has not yet been approved provides, among other measures, that each state that makes up Brazil must structure at least one center of reference in rare diseases for attention to the population.
Drugs with Cannabis in Sao Paulo
Despite the criticism of the legislative response, the parliamentarian stressed that there are good initiatives and cited the so-called ‘National Policy for Comprehensive Care for People with Rare Diseases’, instituted by an ordinance of the Ministry of Health,
The legislator also referred to the 2023 law of Sao Paulo, which created the State Policy for the Free Supply of Cannabidiol-Based Medicines; that is, drugs made on the basis of Cannabis sativa, also known as marijuana or hemp. She added that the São Paulo law “is an important and pioneering step that can become a mirror for the rest of the country,” since it will care for a large number of patients with rare diseases.
