"If I were a white woman, would the service be the same?" asks Saionara.
She’s not alone in asking that question. Almost 12 percent of Black Brazilians feel they have been discriminated against in the health care system, according to Brazil’s 2009 National Policy for the Integral Health of the Black Population.
The policy was established to ensure equitable health care for Brazil’s Black population.
"It was a great thing to have that policy, but few cities have implemented it,” says Marjorie Chaves, a Black feminist activist and Ph.D. student in social policy at the University of Brasilia (UnB). “Black women are the ones with the worst health indexes in Brazil.”
Women are particularly vulnerable to lupus. Between 2020 and 2021, nine out of ten people treated for lupus in Brazilian hospitals were women, according to Ministry of Health data obtained through the Access to Information Law (LAI).
Being a woman and being of African descent are conditions that trigger more severe episodes of Systemic Lupus Erythematosus (SLE), according to medical literature.
"Some of the genes related to the development of lupus are associated with the X chromosome, of which women have two. And there is also an activation of the lymphocytic cells that produce antibodies by estrogen, a predominant hormone in women," explains Dr. Evandro Klumb, coordinator of the rheumatology teaching unit at Rio de Janeiro State University (UERJ).
According to Klumb, almost 85% of the people treated at the Rheumatology Division of Pedro Ernesto University Hospital in Rio de Janeiro are Black. "The most severe cases of lupus occur in people of African descent and then in Caribbean and Latino people mixed with Spaniards," the physician added.
With a mixed population, in which 56% of people declare themselves to be black and 52% are women, Brazil is on the map for the high incidence of severe cases of the disease.
Other factors contribute to the fact that Afro-descendant women in Brazil are the ones who get sick or die most often from lupus.
"The impression that Brazilian society has of Black women is that we are strong. Many doctors have in their imagination that we can withstand pain,” says Noêmia Lima, a consultant and specialist in Human Rights and Ethnic-Social Issues.
This is where Saionara feels the impact of discrimination when seeking treatment for SLE. She has to go to the hospital once every three months so doctors can monitor the progress of the disease.
"If you go to the public system, you find a very long queue. By the time your turn comes, they run out of forms. If you complain, it's rude. If you go to a private doctor’s office, they look down on you. They discriminate against you in the same way," she complains.
For Noêmia, there are other issues to be considered – everything ranging from housing to education.
In Saionara's case, she was unemployed for a year after discovering she had lupus. She used all her severance pay to go to private doctors and buy medications because she could not get appointments in the public system.
There are even worse situations, says Jacira Santana, 64, the founder of Associação Lúpicos Organizados da Bahia (Loba). Of the 4,000 people served by her organization, about 85% are Black women living on the outskirts of cities. "Many come to us saying that the doctors say that the pain is 'something in the head', that it is 'due to a lack of a man’. Many are from the interior. They don't know where to find assistance. Others suffer domestic violence.”
When Saionara was diagnosed with lupus, she spent a month and a half in bed, not wanting to leave the house. Then she decided she had to change her way of thinking. Today, she lives one day at a time. "One day you feel one thing, and the next day, another. If you let yourself fall, the disease runs over you," she says.
In Brazil, it is not only skin color that influences access to lupus treatment and the quality of treatment. Historically poorer regions, such as the northeast and north, where there are more Indigenous and Black populations, are also the regions where the incidence of lupus is higher. But access to medications and rheumatologists is scarce and data on the disease is limited. According to research by the Americas Health Foundation (AHF), published in 2021, Brazil has little data on SLE and when it exists, it only includes statistics on the disease in the south and southeastern parts of the country.
The Medical Demographics 2020 survey, conducted by the Federal Council of Medicine (CFM), shows that 54% of rheumatologists work in the Southeast, where cities such as Rio de Janeiro and São Paulo are located. In the North Region, where a large part of the Legal Amazon is located, there are only 4% of the country's rheumatologists.
The lack of scientific and demographic data is evident in the response by the government and the Brazilian population.
"There is a lack of public policies. There is also a lack of health education for the population," says Dr. Klumb, the coordinator of the rheumatology teaching unit at Rio de Janeiro State University.
The Brazilian Society of Rheumatology (SBR) has initiated the first research that will provide epidemiological data on the population with lupus. "It is an important initiative for us to know the difficulties of people with lupus in the country, the points of improvement and medication, how the patient behaves," said Dr. Edgard Torres dos Reis Neto, coordinator rheumatologist of the lupus commission at SBR.
It can’t come soon enough for Irma de Almeida, 48, who started having joint pain three years ago when she lived in São Paulo. With swollen fingers and back pain, she sought specialized care, but could not find rheumatologists through the public health system. She decided to pay for a private consultation and have all the tests done as well. To cover the costs, she took out a loan of approximately $1,500. Eight months later, she was diagnosed with lupus.
Irma was going to the doctor’s office every three months, but since August 2020 she has not been able to schedule an appointment with a rheumatologist. First, the pandemic disrupted medical services. Then she moved to Roraima, a state on the border with Venezuela where only three rheumatologists practice. "I worry too much, I lose sleep. When we visit the doctor, it takes a weight off our shoulders.” Irma made a doctor’s appointment in February and she’s still waiting.
The AHF study, with Brazilian researchers, showed that the six main barriers to early diagnosis and access to treatment in the country are: a lack of rheumatologists, with the addition of inequalities in their distribution in the country; lack of training of primary care professionals; outdated government guidelines for treatment and provision of new drugs; poor access to diagnostic tests; lack of epidemiological data; and treatment failures and interruptions.
Patient associations are often created out desperation by of those living with lupus, spurred by the determination to fight, to survive. For the leaders, it is also an occupation because many lose their jobs as a result of treatment. But carrying on the activities requires commitment and sheer will. Several associations die along with their leaders, leaving other patients stranded and in need of information.
"I want to transfer the association to someone else because of the health problems I have, but no one wants to be in charge,” says Sandra Lucas, member of the Association of Lupus Carriers and Friends of Rio de Janeiro (APALURJ). “They are afraid of losses, sometimes it's one after another. We get attached to people."
Patients such as Saionara put their hopes for treatment in the association. "Lupus makes you depressed, it makes you unable to have a normal life," she says. Saionara finds strength in being with others who understand how she feels.
The pandemic robbed her of that when everyone had to interrupt their activities. "We spent a year without being able to hug each other, without talking, it was horrible,” Saionara laments.
Jacira Santana keeps her schedule busy with activities at the association she founded. She discovered she had lupus 25 years ago and she knows what a difference joining forces can make.
"We have to fight for people to recover and see that we are equal human beings," she says.