Sickle cell disease: a social and population issue.

The marks of blackness and the importance of the black population in the construction of a Brazilian identity are evident in the country's history. From the slavery period, with the struggle of Zumbi dos Palmares, to the current times symbolized by the struggle of sociologist, activist and politician Marielle Franco, many institutions and characters have given strength to the black movement and the fight against prejudice, racism and inequality Social.

From the 70s onwards, the black movement began to actively defend the need for public policies aimed at blacks, as a form of inclusion in socio-educational fields. At the turn of the century, the institution of the Interministerial Working Group for the Valorization of the Black Population in Brazil and the holding of the World Conference Against Racism, Racial Discrimination, Xenophobia and Related Forms of Intolerance, in Durban-Africa in 2001, helped to expose to the world the demands and needs of the black population and gave rise to practical measures, such as the creation of racial quotas programs and the implementation in 2003 of the Special Secretariat for the Promotion of Racial Equality of the Presidency of the Republic (SEPPIR).

Knowing the data of this reality and the ethnicity of the Brazilian population is equally important when the subject is sickle cell disease, a hereditary disease characterized by the alteration of red blood cells and that affects, above all, black individuals: 54% of the Brazilian population)¹.

Ministry of Health and SUS: attention to sickle cell disease in Brazil

It is estimated that in Brazil, each year, 3,000 children are born with Sickle Cell Disease and 200,000 with sickle cell trait. Despite being the most prevalent hereditary disease in Brazil, it is still little known in the country. This is what the research revealed “Brazilians' perception of sickle cell disease” conducted by IBOPE Inteligência in May 2020, which interviewed 2,000 Brazilians, including men and women, aged 16 or over.²

Due to the high associated morbidity and mortality rate and with the objective of changing the history of Sickle Cell Disease in Brazil, the Ministry of Health included the detection of hemoglobinopathies in the National Neonatal Screening Program (PNTN), performed through the Test of Pezinho, allowing the early diagnosis of the disease and benefiting patients with proper care and treatment. It has also implemented improvements in the areas of hemotherapy, fostering the implementation of the Care Line for Sickle Cell Disease Care, training of professionals and international cooperation.

Currently, the SUS provides the necessary medication to minimize the complications of Sickle Cell Disease, such as: folic acid, analgesics, anti-inflammatory drugs, antibiotics and, mainly, hydroxyurea, a drug that positively impacts the quality of life of patients by reducing the number of vaso-occlusive crises, hospitalizations, occurrence of Acute Thoracic Syndrome (AST), acute neurological events and the mortality rate. Since 2015, the SUS has also started to perform bone marrow transplants, a curative treatment for sickle cell disease.

There are advances in the treatment of the disease. And it is urgent to guarantee access to the entire Brazilian population.

The gap between demand and supply of drugs to treat sickle cell disease patients is greater in poor and underdeveloped countries, including Africa, Asia and Brazil, where the number of patients tends to grow.

Therefore, it is necessary to implement more blood centers and expand SUS support to the National Neonatal Screening Program (PNTN), which offers the newborn screening. It is also essential to provide the main drug used in the treatment of sickle cell disease, hydroxyurea, free of charge, in addition to carrying out the blood transfusions that many patients need.³

Throughout its history, Masters has spared no efforts to make available to all patients the best medicines in the world. In December 2021, Anvisa approved the first treatment for sickle cell disease, already used in Europe and the USA, with precise and safe dosage for patients from 2 years of age.

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References:

1. IBGE – Brazilian Institute of Geography and Statistics. Continuous National Household Sample Survey. Available in: https://biblioteca.ibge.gov.br/visualizacao/livros/liv101651_notas_tecnicas.pdf Accessed in December 2021.
2. Sickle cell anemia: almost half of Brazilians are unaware of the most prevalent hereditary disease in the country. Available in: https://newslab.com.br/anemia-falciforme-quase-metade-dos-brasileiros-desconhece-doenca-hereditaria-de-maior-prevalencia-no-pais/ Accessed in December 2021.

Unicamp. Sickle cell diseases still require attention. Available in: https://www.unicamp.br/unicamp/index.php/ju/noticias/2019/04/23/doencas-falciformes-ainda-demandam-atencao Accessed in December 2021.