What are the rights of workers with sickle cell disease?

A large contingent of workers in Brazil suffers from sickle cell disease, but few know their rights, especially in the labor and social security fields. To ensure that everyone can have access to job opportunities, exercise their citizenship and improve their quality of life, it is important to know and publicize these rights and the conditions that must be fulfilled to gain access to them.

Sickle cell disease and social security aspects

Sickle Cell Disease can often lead to prolonged hospitalizations with periods of incapacity for work and in some cases to permanent incapacity, with disability retirement. Determining disability resulting from sickle cell disease is not easy for experts, who must be informed about the conditions of access to work and types of work assignments required to determine whether the disability exists, whether it is temporary or permanent, and if it is temporary, how long the worker must remain away.¹

The main rights of people with Sickle Cell Disease²

Among the main rights are the right to treatment, sickness benefit and disability retirement. Free passes and special vacancies in public tenders are not mandatory and depend on organization and political pressure from patients.

Right to treatment to cure sickle cell anemia

The only known cure for sickle cell anemia is a bone marrow transplant, which is covered by the SUS. To perform the procedure it is necessary to have a compatible donor, and if he does not exist within the family, it is necessary to wait on a transplant waiting list. The presentation of the medical request and the justification for the transplant are required. If the request is not released, you can appeal to the court, through a lawyer or public defender.

Right to health treatment

Ensuring health care for the entire population, regardless of race, color, sex or religion, is a duty of the State provided for in the Constitution, as well as the provision of medicines, medical care and follow-up. Whether by the Municipality, the State or the Union. If it is not possible by regular means, in this case too, the citizen can appeal to the Judiciary.

Right to sick pay

This is a right that depends on the degree of evolution of the disease.
To obtain the benefit, the patient must have worked with a formal contract or contributed as self-employed for a period of up to 12 months prior to the date of the INSS request or, in some cases, up to 36 months. If you do not meet these conditions, then it is time to apply for the so-called continuing benefit benefit, known as BPC or LOAS (see below). To do so, you will need to undergo INSS expertise and receive a favorable opinion from the doctor who performs the evaluation.

Right to LOAS (BPC)

The BPC – Benefício de Prestação Continuada, or LOAS – Law for the Organization of Social Assistance, can be due to patients with sickle cell anemia who prove that neither they nor their family have enough income to support themselves (less than ¼ of the minimum wage per person in the household). family). Even in some cases where the income per person is above this amount, it is possible to file a lawsuit in the Federal Court to obtain the benefit, as long as it is proven that the person with Sickle Cell Disease is not able to maintain himself.

Right to retirement

The retirement of a person with sickle cell disease depends on a number of factors, as retirement can be based on contribution time, age, special retirement or disability. Each of these cases has its rules. Therefore, for the person with Sickle Cell Disease unable to work, the ideal is to apply for disability retirement.

By disability retirement

Possible to obtain after a period in which the person is receiving sick pay and is unable to return to their activity or any other function. To apply for sick pay, the sickle cell disease carrier must have worked with a formal contract for 12 months, in some cases up to 36 months, before filing the request with the INSS. Here, too, a judicial appeal can be made, if the benefit is denied, provided that the person proves to be incapable of work. The follow-up of the case by a lawyer is recommended.

Vacancies in public tenders

There is no law that obliges the reservation of vacancies (quotas) in federal public tenders for people with Sickle Cell Disease. And, as a rule, states and municipalities follow the same guidelines and laws as the Union. The evaluation of any appeal by a person with Sickle Cell Disease who seeks to enter the public service through vacancies for people with disabilities will always depend on the judge's interpretation.

Right to free pass

As in the case of vacancies in public tenders, the right to a free pass is not guaranteed by law and must be regulated by each municipality. Here, the way to obtain the benefit passes, therefore, through the organization of people with Sickle Cell Disease into civil entities and their political pressure on the mayor and councilors.

As can be seen, there are benefits already consolidated and guaranteed by law and others that depend on the organization of patients, the support of entities that represent them to achieve some conquest with the public authorities and even the medical experts responsible for the evaluation of each case. It is through the union of all that we can build a fairer country that takes care of those who most need attention and health care.

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References:

1. Brazilian Journal of Health Review. Sickle cell disease and social security aspects. Available in: https://www.brazilianjournals.com/index.php/BJHR/article/view/21371/17063 Accessed in May 2022.
2. Vitório Neto Advocacy. Rights of sickle cell anemia patients. Available in https://vitorionetto.com.br/direitos-anemia-falciforme/ Accessed in May 2022.