LISBON — Across the world, the Covid-19 pandemic laid bare the fact that widespread racial and ethnic inequities often determine whether people can access health care, and who survives. The United States was among nations that saw far higher death rates among its Black and immigrant communities.
Was the same true in Portugal? No one knows.
“I would love to have data to give you an answer,” said Luciana Gomes, a physician who migrated to Portugal from Brazil two decades ago and is completing her residency in a public health unit near Lisbon. “But we don’t have the data.”
Even though Portugal is ahead of the U.S. on almost every health metric, it falls short in one crucial area: The country does not collect racial data on its citizens. That obscures the extent of health disparities and the impact of racism on health outcomes.
In this, Portugal is not an outlier in Europe. It is common across this continent of once quite homogenous countries to not collect racial data. In some cases it is outlawed; in Portugal, doing so was long considered to violate the constitution.
In many cases, it’s a vestige of nationalism. “We are all Portuguese” is a common phrase here. The research gap reflects discomfort with discussing race, as well as concerns about violating privacy and increasing discrimination. But critics say it also reveals a lack of interest in understanding problems marginalized communities face.
“They don’t want to have data,” said Evalina Dias, the co-founder and president of DJASS (Portugal’s Association of African Descendents), an antidiscrimination group here. “Because then they’d have to do something about it.”
This seafaring nation colonized Africa more than 200 years before Britain, initiated the transatlantic slave trade, fought colonial wars into the 1970s, and to this day maintains close connections with former colonies that include Mozambique, Angola, and Brazil. The legacy of that colonialism is a large number of Black and multiracial Portuguese citizens, residents, and migrants that advocates say can suffer from health disparities caused by lack of access, language barriers, and poverty. Poorer health outcomes also affect Portugal’s Romani population and newer migrants coming from South Asian countries like Nepal and Bangladesh.
Dias and Gomes say racism is also at play, reflected in some patients being treated poorly by their physicians and in how few of those physicians are native Black Portuguese. Gomes, who stressed she was speaking for herself only, said the lack of diversity in the medical field means few voices discuss racism and racial disparities in medicine. “Why, every time we go to a health institution, the Black people are security guards or secretaries?” she asked.
The few studies that exist suggest disparities do exist: Those with lower education are more likely to be in ill health and obese and those who are poor, or migrants, or both, face earlier deaths.
“Interest in health equality has been practically non-existent in the country,” noted scholars who conducted a review of more than a decade of research and found an ingrained belief that the country’s low-cost, universal health care system is enough to prevent inequalities. “This is apparently not true,” they wrote.
In Cova da Moura, a hillside suburb outside Lisbon where many Cape Verdean residents live, women at street stands sell fresh fish heads and squid in inky tubs, the pavement is broken, and electrical wires run in chaotic tangles between houses, a testament to the impromptu nature of the neighborhood’s construction.
It’s in such crowded suburbs where many migrants live, literally pushed to the edges by high housing prices in the city center. It’s also in these fast-growing areas where newer residents have less access to health care. Even if they are registered with the health system, many have not been assigned a physician because of the nations’ doctor shortage and must often wait in long clinic lines.
Other countries in Europe, most notably the U.K. and Ireland, are starting to collect racial data and employ it in efforts to combat racism. The United Nations has asked Portugal to do so as well.
The request triggered a major domestic debate. A working group in 2019 argued that Portugal’s 2021 census should include questions about race, ethnicity, and country of origin. But many scholars argued that introducing racial categories into official statistics would reinforce racist ideas and that the collection of such data in the U.K. did little to stem racism there.
The leader of Statistics Portugal said his agency was not experienced enough to collect racial and ethnic data and it would not be included in the census. Instead, it conducted a survey of 35,000 households to understand ethnic and racial backgrounds of residents and assess living conditions. The survey included questions on employment, housing, and discrimination, and was conducted in a variety of languages, not just Portuguese.
The groundbreaking results were released late last year. The survey found that more than 1.2 million people, 16% of the population, reported experiencing discrimination, particularly people who identified as Romani, Black, or mixed-race. Another 65% said they believed discrimination exists, and 36% said they had witnessed it.
While the survey did not focus on health, it found that people of Romani origin were more likely than the average population to have a chronic illness and, somewhat surprisingly, that people who were Black or mixed-race were less likely to have one. Fewer than 8% of those surveyed were unable to receive the appointments or treatments they needed — probably because all residents here have access to low-cost care.
Of those reporting discrimination, nearly one-quarter said it occurred in a health care setting; job seeking was the only other situation with more discrimination reported.
Though the results were released with much fanfare, Pedro Magalhães, a political scientist and polling expert at the University of Lisbon who helped develop the survey, said there has been little follow-up, even from those most vocal in demanding racial data be collected. “I’ve seen very little work with these results. The news coverage was almost nothing,” he said. “It’s very disappointing.”
That lack of interest, says Dias, stems from Portugal’s denial of the racism that exists within its borders. The country sees itself as the birthplace not of colonizers, but of great discoverers. It has its own “Mt. Rushmore,” a gleaming white, 170-foot-tall stone sailing caravel that juts toward the sea just west of Lisbon, carrying the carved likenesses of storied navigators, among them Ferdinand Magellan, Henry the Navigator, and Vasco da Gama. In contrast, a planned monument to enslaved people that Dias spearheaded and was approved by city leaders in 2017, has yet to be built.
Many Portuguese take pride in their history of ocean exploration, of being “kind” colonizers. Portugal, they note, banned the import of enslaved people in 1761, though after that, it continued profiting off the transatlantic slave trade, placing far more people than any other country — nearly 6 million people over four centuries — into slavery. The nation’s “luso-tropicalist narrative” speaks of benevolence to natives and mixing with local populations.
“That is the narrative we learn in school. And it’s a lie,” said Dias, who has experienced racism first hand in matters large and small. She came to Portugal from Senegal at the age of seven, with parents originally from the former colony of Guinea-Bissau. And though she is Portuguese through and through, she says she is not accepted. “You feel Portuguese but then the Portuguese don’t recognize you,” she said. “People ask ‘Where are you from?’ I say ‘Lisbon.’”
Sónia Dias has been studying health disparities for two decades, a topic once outside the margins of public health research here. As the new dean of NOVA National School of Public Health, she’s now helping usher such work into the mainstream. Earlier this year, she contributed to a special issue of the Lancet, one that argued migrant health inequities in Europe were not just a health crisis but a “moral reckoning.”
The inability to collect racial and ethnic data means Dias has struggled to understand what causes health inequities here. Most new migrants, she said, are healthier than native Portuguese in the same socioeconomic brackets so it’s not that they enter the country sicker. She’s worked on teasing out what is keeping them from staying healthy after they arrive — a problem mirrored in the U.S.
“Is it because they are migrants or because they are poor, or because they have less educational opportunities or poor housing?” she asked.
Dias argues the health system is not responding quickly enough as the nation’s demographics shift. That’s especially true in obstetrics, where physicians often deliver babies from migrant women who have significant health complications and sometimes receive no prenatal care because they are afraid to access the health system.
The maternal mortality rate in Portugal remains among the world’s lowest; the death of a migrant woman in childbirth two years ago was so upsetting, it contributed to the health minister resigning. But the physician shortage has forced some maternity wards to close during holidays.
Improving care for migrants and marginalized populations is compromised by the nation’s lack of data and by the listing of migrants as Portuguese in health registries once they attain residency or citizenship. Obtaining information about migrants who are not documented is even more difficult.
None of this will change, says Dias, until marginalized groups are involved in research and not treated as tokens in studies that make no difference in their lives. Because the country is new to collecting racial and ethnic data, Portugal has a chance to do it much better and overturn the standard hierarchical approach — common in the U.S. — where white middle class researchers do studies, as Dias puts it, “on, rather than with, migrants and refugees.”
Dias turned that power dynamic on its head recently with a study in which research subjects took photos to show how they’d been affected by Covid rather than be interviewed. “The experience was really amazing,” she said. “People could participate in a way they were comfortable with.”
Frustrated by the data gap, sociologist and doula Carolina Coimbra recently helped organize an effort to collect information on health disparities. She had heard that Black women and their babies were more likely to die during and shortly after childbirth in the U.K. and U.S. and wondered if the same was true in Portugal.
Inspired by the global Black Lives Matter movement, she and a group of doulas, nurses, researchers, and psychologists teamed up to form the Health Association of Black and Racialized Mothers in Portugal, or SaMaNe, and create an online survey of Black mothers’ birth experiences.
They received 158 responses, enough to suggest that obstetrical violence — injustices suffered in clinical settings ranging from unnecessary procedures to dehumanizing treatment during pregnancy, delivery, or post-partum care — is not uncommon. More than 40% of women said they felt neglected by health care providers; more than 80% said they did not have their choice of companion with them during delivery; more than 30% said they felt humiliated.
A similar survey of Portuguese women more broadly, which did not include racial data, found nearly 44% did not have the birth experience they had wanted, but only 11% said they were not treated in a friendly manner.
In an interview with STAT months after she’d first read some of the survey responses, the experiences were still painful for Coimbra to repeat.
There was the pregnant woman of African descent who had an ultrasound and was casually told her baby didn’t have a nose and did she want an abortion? The woman refused and spent her pregnancy agonizing. After delivery, she was terrified to look at her newborn. When she did, she found her baby had a perfect nose. When she asked about what she’d been told earlier, a nurse told the woman it was because African noses look a certain way and can’t be seen on ultrasound. “Can you imagine if she’d had an abortion?” Coimbra asked.
Another woman wasn’t told her ultrasound showed a severe birth defect and had little time to deal with the news when the baby was born. “Sometimes they treat us like we don’t understand anything,” Coimbra said. Coimbra, like many of the women who shared their experiences in the survey, was born in Portugal, in her case to parents from Angola. Yet many of these AfroPortuguese women feel like outsiders and say they are not treated well.
In another response, a woman in her 20s was told by her doctor “we should sterilize you” while she was in the hospital. He assumed she had many children. It was her first. Others said they were asked repeatedly if they knew who their baby’s father was or if all their children had the same father. “People always think we are poor and have lots of children, that’s just not true,” Coimbra said.
Coimbra’s group is now disseminating the information they gathered to politicians and to community organizations so Black Portuguese women can be better informed about their rights. She had a great experience in childbirth and wants others to have that as well.
She said she often gets pushback for her work on racism from those in the medical establishment who argue that things are much worse in other countries and that people here should be grateful. “They always say, ‘We’re not like the U.S. There it’s really bad. Here you have health care. Here you have everything.’”
But there’s one thing the U.S. has in abundance that Portugal does not. “To have someone working in DEI?” Coimbra said. “That’s a dream.”
This project was funded in part by an International Health Study Fellowship from the Association of Health Care Journalists supported by the Commonwealth Fund. Our financial supporters are not involved in any decisions about our journalism.