Sickle cell disease: for more inclusive public policies for the black population.

December 6, 2021

In a continental country like Brazil, where 54% of people are black and brown, groups linked to the black movement have fought for respect and equality and are committed to demanding more inclusive public health policies and better quality of life for all, without segregations.

The implementation of a national policy of care for people with sickle cell disease is in this context, as it mainly affects the population of African descent and all those people who are the result of the intense miscegenation that took place in the country.1


Recognition of sickle cell disease as a public health problem

An important milestone in the struggle to improve the health of the Afro-descendant population was the holding of the II National Seminar on the Health of the Black Population, after which Ordinance 1,391/05 was published, which included care for sickle cell patients in Brazilian public health. and Ordinance No. 822/90, which established the National Neonatal Screening Program (PNTN). The Foot Test, performed free of charge in the first days of life in all public health networks, is the most effective way to detect sickle cell disease early and can diagnose other diseases such as congenital hypothyroidism and phenylketonuria.

Laboratory diagnosis of sickle cell disease, as well as other diseases that can be detected by the heel prick test, has the potential to reduce morbidity and mortality rates and ensure early treatment for all, improving the quality of life and survival of diagnosed patients. .


Social inclusion, citizenship and quality of life.

The burden of sickle cell disease is much greater in poor countries. In Africa, for example, the chance of people with sickle cell anemia dying before age 5 is 50% to 90%. In rich countries, it is possible to live well with this and other sickle cell diseases even after age 60. In the North and Northeast of Brazil, sickle cell anemia is more common than in other regions of the country, due to the fact that the mutation that causes the disease is prevalent in populations of African descent, whose presence is large in these regions.2

As one of the most common genetic diseases in the Brazilian population, as recognized by Anvisa itself, sickle cell disease has, therefore, a social aggravating factor, since individuals with lower socioeconomic conditions have higher rates of morbidity and mortality. However, due to miscegenation, the disease in Brazil no longer chooses ancestry or social class, and can affect any Brazilian. That's why the treatment of sickle cell disease is a cause for which everyone should fight: patients, family members and professionals involved in improving people's health.3


Advances in treatment and the importance of multidisciplinary teams.

Many advances have been made in the fight against sickle cell disease in Brazil. However, much still needs to be done. It is necessary to move forward with the availability of new medicines and treatments, both in public and private health agencies2,3 and improve emergency care, which is still not ideal due to the lack of knowledge about the disease by emergency care teams. In addition, as sickle cell disease affects the entire body, there is a need for these patients to be evaluated by multidisciplinary teams, with specialized and trained professionals, which include, in addition to hematologists, nurses, psychologists, dentists, nutritionists, physiotherapists and social workers. .3,4

Awareness campaigns about the disease continue to be fundamental to encourage early diagnosis and referral of appropriate treatment, always looking at the portion of the population most impacted by the disease: people of black ethnicity.

Good news is the approval, in December 2021 by Anvisa, of a pioneer treatment in Brazil, with safe and accurate administration of hydroxyurea in patients from 2 years of age.

With this, Masters takes the lead as a partner of patients, doctors, hospitals, public health agencies and health plans in accessing new treatments for sickle cell disease in Brazil. Learn more at https://masterspharma.com.br/pt/blog/

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References:

  1. In search of equity in the Brazilian health system: the case of sickle cell disease. Available in: https://www.scielosp.org/article/sausoc/2014.v23n2/711-718/pt/ Accessed in December 2021.
  2. 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.
  3. Reciis – Rev. Eletron. common Info. Health – Fiocruz. Patients with sickle cell disease: reflections of the history of the black population in access to health. Available in: https://brapci.inf.br/index.php/res/download/148335 Accessed in December 2021.
  4. UNIFESP – Paulista School of Nursing. National day to fight for the rights of people with sickle cell diseases. Available in: https://sp.unifesp.br/epe/desc/noticias/dia-nacional-de-luta-pelos-direitos-das-pessoas-com-doencas-falciformes Accessed in December 2021.

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