Time to revise health policy for black populations, says expert

The National Integrated Health Policy for Black Populations (PNSIPN in the Portuguese acronym) introduced by the Ministry of Health in 2009 is facing a critical stage and needs revising, said Maria Inês Barbosa, Doctor of Public Health and advisor for the Pan American Health Organization (PAHO) in Brazil. Areas for improvement include more cross-cutting policies and a focus on individuals.

“When you talk about health in black populations, it's [the health of] more than half the Brazilian population [you're talking about]. And this policy is [still] approached as [if it were] a special policy,” she said during a meeting of the National Health Council last week. “The SUS [Brazil's public healthcare network] can only succeed if this policy is properly addressed,” she completed.

According to Barbosa, most managers fail to take the required cross-cutting approach to the PNSIPN. “We experienced slavery for longer than we've been free from it. So now we must go back and start something new,” she said. She pointed out that it takes more political will to pursue this policy effectively, because it is extremely complex, especially when it comes to confronting structural racism. One major challenge, she said, is trying to make the efforts more local in order to really make programs more pervasive.

“It seems that just accounting for the majority of the population hasn't helped much. It takes some insight into the restraints and the possibilities. This is a complex policy, inasmuch as the SUS is complex. There must be an effective commitment that breaks with racial biases. We are talking about a majority of Brazilians. It is not a single issue,” she said.

According to the 2010 Census conducted by the Brazilian Institute of Geography and Statistics, 51% of Brazilians are black or mixed race. But the IBGE categorizes them all as “black”.

Maria Zenó Soares, general coordinator of the National Federation of Sickle Cell Disease Associations, says her personal experience shows how much this policy needs advancing. Herself a patient with sickle cell disease – one of the most common heritable disorders in Brazil, affecting mostly blacks – she has faced long waiting hours in public hospitals, and was even blamed with being addicted to morphine.

“Sickle cell disease and pain go together. Physical pain can be solved with morphine. But the suffering of experiencing racism and neglect are wounds that I carry in my soul, they won't heal. I've had to wait six hours for care. I was so overwhelmed with pain that I rolled on the floor and eventually couldn't help relieving myself right there,” she said.

Soares hopes that the PNSIPN policy can focus more on individuals, whom she refers to as “brethren in skin and sickle”, in a reference to sickle cell disease, which gives red blood cells a sickle-like shape. The first step, she said, is to recognize that there is a structural racism deeply rooted in the healthcare system, and acknowledge the social vulnerability of black populations.

João Paulo Baccara, coordinator of the National Policy for Blood and Blood Products of the Health Ministry, admits that there are faults with the way health information on black populations is collected, especially with regard to sickle cell disease. He told Agência Brasil that the ministry is planning to create a comprehensive database on the disease combining data from across the country, and a pilot project to integrate all healthcare areas.

Additionally, in the first quarter of 2015, the country is due to start producing hydroxyurea, a drug used to treat sickle cell disease. Last week, the laboratory responsible for manufacturing it released a statement to blood centers throughout the country warning about a temporary interruption in production due to a shortage in the active ingredient supply. In a note, the government ensured that the drug will still be available.

Translated by Mayra Borges