TORONTO - The Roma are an insular community, rendered fearful of authority after centuries of discrimination and persecution.
In Canada, many are unable to communicate with outsiders without an interpreter. That language barrier places serious strictures on their ability to avail themselves of medical care.
For these and other reasons, meeting this community's health needs is an extraordinarily challenging undertaking, experts suggest. And it's one at which some feel they are currently failing.
"We have as a society very weak tools to know who's here and what their social, cultural identity is. So as a result of that, we have no firm handle on who we're dealing with, how many people are here and what their health needs are," says Ruby Lam, manager of access and equity at Toronto Public Health.
Lam's department is keen to fill those gaps. This week it will host a Roma health forum, drawing together roughly 200 people from service agencies and health organizations throughout the city.
"We don't know enough about this community. What we do know is anecdotal," Lam says. "We know that this is a community that is presenting with high and complex health needs."
The Roma Community Centre in Toronto — the only Roma organization in Canada — estimates there are about 80,000 people of Roma origin in this country. Some families came to Canada in the early part of the 20th century or even before.
But there has been a massive influx of Roma since the late 1990s, with some estimating that as many as 20,000 have come to Canada in that time. The vast majority have settled in Toronto, in the Parkdale neighbourhood in the city's west end. Hamilton too has a significant number of Roma people, and communities are growing in Vancouver and Edmonton, says Gina Csanyi-Robah, executive director of the Roma Community Centre.
Many come seeking refugee status, claiming persecution in Hungary, the Czech Republic or other parts of Europe. Those claims, once frequently accepted by Canadian authorities, are more commonly rejected these days.
The uncertainty of their status in Canada is creating great mental and emotional stress among people in the community, say people who work with the Roma.
As well, federal government efforts to clamp down on health-care system usage by refugee claimants are creating confusion about what services are available to the community.
For instance, someone exhibiting symptoms of what might be tuberculosis has to weigh whether or not to seek care. If they have TB, they will be treated under rules meant to ensure diseases that could be transmitted to the general Canadian public don't go unchecked.
But if they seek care and they don't have TB, they will be presented with a bill for the care, says Lam. "It drives the problem underground."
"Often people wait and wait, because they can't afford to pay for the health care bills. They wait and wait until they're really sick," she says.
But even without those changes, serving the needs of this community is difficult, Lam notes.
Unlike doctors, who will only be reimbursed for the care of people with health-care coverage, Toronto Public Health offers services to anyone in the city who needs them. That is their mandate.
But Lam says the system knows something isn't working. Roma people may turn up for the first in a series of courses on nutrition or prenatal health. But that may be the only time they come.
"In our programs we're seeing that often the Roma come once, and they don't come again," Lam says. "So as health-care providers, it poses a challenge of, 'What can we do for an individual with needs when we aren't sure we'll see them again?'"
Contributing to the problem may be the fact that the people available to serve as translators for public health — Hungarian speakers, for instance — may be people the Roma find difficult to trust.
"We have a very unique challenge which is that the Hungarian-speaking interpreters are sometimes the very people the Roma are the most scared of," Lam says.
Victoria Perez, a settlement worker with Culture Link, a Toronto-based settlement assistance agency, has been dealing with nearly 1,400 new Roma clients this year alone. Their health needs are enormous, she says, but the system has a hard time filling them.
"One-hundred per cent," she says, when asked it there is a lack of services for this group. "I wish we could do more."
Csanyi-Robah says the community's mental health needs are substantial.
"There's a massive amount of stress being experienced," Csanyi-Robah says, noting that many of the people her centre works with have sold everything to come to Canada, and are living in precarious circumstances. "I have to say the mental and the physical effects begin to manifest after awhile."
After centuries of being hounded from their homes and marginalized, the Roma don't trust authorities — even authorities who offer services, she says.
"In Canada, Roma have come with this huge fear of society. A huge fear of institutional settings. A huge fear of people in power," Csanyi-Robah says.
"And having our community come out to services that are offered by health centres, it's very rare you're going to get people to participate in these sorts of things. Especially if you don't have a member of the community present that is running the workshop."
Catherine Zeman, a professor of preventive medicine at the University of Northern Iowa, has done extensive research on the health needs of the Roma. She says programs that don't hit the right note won't entice this community to participate.
"Those programs, if they're not carefully done so that they respect the culture and so that you identify the people within the culture who can help you make it happen — so, sort of lay health workers — then you're going to end up with just challenges and difficulties. And the program's not going to work," says Zeman.
"You can't come across like some individual who's telling them what's good for them from the outside."