Supported by ANIS, ANADEP files petition to the Brazilian Supreme Court for protection of rights violated during the Zika virus public health emergency

A judicial constitutional review was filed before the Brazilian Supreme Court on 24 August, to demand the protection of rights violated in the context of the Zika virus epidemic in Brazil.

Coordinated by Anis – Institute of Bioethics, and filed by the National Association of Public Defenders (ANADEP), the lawsuit was the result of a collective effort of a broad group of researchers, activists, and lawyers to articulate the demands of women and children affected by Zika.

Six months after the World Health Organization declared an international public health emergency due to the neurological disorders caused by the virus, families affected by the Zika virus congenital syndrome still have not received support due to omissions on the part of the Brazilian government.

The demands of the petition are organized into five topics. The petition says:

We request the following social policies for motherhood and childhood protection for women and children already affected by Zika:

  • Access to the Continuous Cash Benefit Programme (Benefício de Ação Continuada – BPC), the most important income transfer policy for disabled people: we request the recognition that all victims of the congenital Zika syndrome are entitled to receive the BPC, provided that neurological effects are proven through professional medical opinion. In these cases, victims should be waived from expert examination by the Brazilian Social Security Institute (INSS) and no criterion of minimum family income should be demanded. We also request that the 3-year limit for the payment of the benefits stipulated by Law No.13.301/2016 be suspended. In addition, we request that the right to receive both BPC and paid maternity leave be guaranteed. Maternity leave, in its turn, should be guaranteed for a 180-day period for mothers of children with congenital Zika syndrome.
  • Access to procedures for early stimulation of children with congenital Zika syndrome in Specialized Centers for Rehabilitation (Centros Especializados em Reabilitação – CERs) within a radius of 50 km from the family residence, or free of charge transportation for treatment away from home when the distance is greater than or equal to 50 km.”

For the general population, but especially for adolescents and women of reproductive age, we request:

  • Access to up-to-date, quality information on the Zika virus epidemic, its uncertainties, risks and prevention strategies. We request the federal government to implement effective public educational policies about the transmission of Zika – including sexual transmission – its known and unknown effects and contraceptive methods available at the public health system for women who do not wish to get pregnant. Information should be available on the federal government’s official website and in materials designed for schools and health services. Access to family planning policies and reproductive health care in line with international standards and the medical consensus on the best available contraceptive methods. We request the distribution of long-acting reversible contraceptives – such as the levonorgestrel-releasing IUD (LNG-IUD) – in the public health system. For pregnant women, we also request the distribution of repellent against vector mosquitoes.

For pregnant women infected with the Zika virus and experiencing psychic suffering, we request:

  • The right to choose the termination of pregnancy in order to protect their mental health: the Zika virus puts infected women through intense suffering because of the uncertainty of its effects on their health during pregnancy and on future children. Added to the negligence of the Brazilian government in eliminating the vector mosquito, the epidemic creates a need to protect the health of pregnant women tormented by the fear of Zika.

The lawsuit is supported by the opinions of an inter-disciplinary group of researchers from the Global Health and Justice Partnership, Yale University; by the specialist in public health and professor at the National Institute of Health and Medical Research in Paris, Ilana Löwy; by the specialist in international human rights law and professor at the University of Toronto, Rebecca Cook; by the philosopher and expert on disability and professor at the University of Stony Brook, Eva Kittay; by the physician and professor at the London School of Hygiene & Tropical Medicine in London, Laura Rodrigues; by the specialist in criminal law and founder of the Brazilian Institute of Criminal Sciences, Alberto Silva Franco; and by the specialist in social policies and researcher of the Institute of Applied Economic Research (IPEA), Fernando Gaiger Silveira.

The lawsuit is based on a belief: science does not provide us with all the answers we would like to have to face the Zika epidemic, but it is the State’s duty to guarantee the rights of women and children. Women of reproductive age fear the epidemic’s devastating effects and are unsupported due to the lack of information and family planning policies. Pregnant women suffer from the uncertainties of the effects of the virus without the right to seek health services in case they cannot continue with the pregnancy. Alone, mothers face the challenge of taking care of their children affected by the Zika syndrome. Although there is no vaccine for Zika nor cure for the neurological syndrome, our constitutional framework provides answers for all other demands in the form of the rights to non-discrimination, health, and social assistance.

Women must be heard when it comes Zika. Listening to women living in the epicenter of the epidemic was one of the first actions Anis undertook: in April we launched the documentary Zika: un documental about ordinary women and scientists from Cariri area in the state of Paraiba, who discovered in their bodies and in their offices the devastating effects of the syndrome unknown to the world. With the Women of Epidemic video campaign, we continued to listen to a number of women – mothers of children affected by the syndrome, pregnant women, disabled women, health professionals – who shared their experiences and sexual and reproductive health and rights demands during the epidemic.

The book Zika: do Sertão nordestino à ameaça global (Zika: from Northeast Back Country to Global Threat), by Debora Diniz, has just been released. It tells the recent history of the epidemic from the point of view of its “sertanejo” (back country) protagonists: the pain of the affected women, the enthusiasm of the discoverer scientists, the dedication of the medical caregivers and resilience of all of them to face the epidemic that the Brazilian government cannot control nor establish adequate public policies in relation to. The lawsuit recently filed joins the effort to recognize the effects of this public health emergency in the most vulnerable population of the Brazilian northeast and to meet the urgent demand arising from their lives: the protection of their rights violated in the context of the epidemic.

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