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Research or repair?

It’s a funding dance that leaves communities vulnerable

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IT’S not easy knocking on the doors of strangers who are feeling ill and asking for samples of their feces, as a University of Manitoba student did in Garden Hill a few years ago.

"People consider it demeaning," one of the student’s advis­ers said.

Little research has been done on the health effects of sur­viving in the grim conditions on Canada’s isolated reserves.

When the student working in Garden Hill was reviewing sci­entific literature for her master’s thesis on acute infectious diarrhea, she had to turn to studies from Australia, Pakistan and South Africa for insight.

She described Canadian First Nations as "Fourth World" — living in Third World conditions in a First World country.

Some argue there’s no point spending time and money demonstrating the obvious — that living without basic plumbing is bad for your health. Many millions of people struggling in the developing world have proved that point.

But Dr. Ethan Rubinstein, head of infectious diseases at the University of Manitoba, said authorities won’t always ac­cept the conclusions of research from other countries.

"People will say: ‘Why do you bring me statistics from tropical countries? It’s not the same here. We have sum­mer here for only two months, and those conditions that are in the tropics are here for less than two weeks a year, and therefore there is no effect of lacking water,’" he said.

"Data has to be generated locally to be applied locally."

Doctors who work with aboriginal communities say there is a "culture of suppression" when it comes to research about health problems on reserves.

"I think it’s calculated," retired Kenora public health doctor Pete Sarsfield said about the lack of epidemiological data.

"If you don’t count it, you don’t have to hide it."

Another doctor has a slightly more generous theory: The government has a crowded list of priorities on reserves, including addressing gangs, addictions and access to nutri­tious food. Officials who have already decided what to tackle when and how may not be interested in research that shines light on yet another problem. "They don’t want to change how they do business."

David Harper, then chief of Garden Hill, approached the University of Manitoba’s Northern Medical Unit for help pinning down the cause of the chronic diarrhea in his com­munity.

"There’s a lot of kids suffering from stomach pains and whatnot. We wanted to see firsthand why."

The student got approval from the university’s research ethics board and the Four Arrows Regional Health Author­ity, and made sure she had an Oji-Cree interpreter to explain the project to local residents so they could decide whether to participate. Busy nursing station staff also helped when they could.

When research projects are not initiated by the commun­ity or on Health Canada’s priority list, gaining co-operation from all the partners is often an insurmountable obstacle.

For instance, Rubinstein would like to investigate whether there are better ways of treating the superbug MRSA in northern communities where entire families are affected.

"It’s useless to treat a single person because the bug will sort of bounce between family members. The idea was to treat the whole household."

However, he hasn’t been able to win support for the pro­ject, even though more effective treatment up North might help everyone in southern Canada by slowing the spread of the superbug.

Harper said city dwellers should be concerned about the consequences for their own families of germs that work their way from the North to Winnipeg.

"It’s time to think globally."

***

GETTING governments to pay for massively expen­sive water and sewer projects on reserves would likely be easier if advocates could present proof the intervention will reduce health-care costs over the long term.

"Intuition doesn’t go well with Treasury Board — they want hard-core data," said a health adviser for First Na­tions. "If you can show you reduced teeth decay, medevacs, obesity — whatever the outcome might be from having running, clean water — it would be interesting to make the argument and we might be more successful than we are."

When data do exist, First Nations and Inuit Health often won’t release the information, citing the privacy rights of individual First Nations, but aboriginal health advocates accuse the government of hiding behind that as an excuse.

First Nations leaders who have the right to release the information themselves often don’t realize their community is a disease hot spot because they don’t have data from other reserves for comparison.

In the case of the potentially deadly superbug MRSA, even the health director for the northern chiefs organization Manitoba Keewatinowi Okimakanak does not know which First Nations have the most cases — the first step in figur­ing out if there’s a pattern. If Island Lake is the hot spot, maybe latrine pails are the culprit; if it’s communities in the northwest corner of the province, maybe infection control in Thompson health facilities is more important.

If the public had been notified that both H1N1 last year and whooping cough this year hit Island Lake harder than any other Manitoba region, there might have been pressure to speed up water and sewer upgrades to prevent the next outbreak.

Medical health officer Dr. Linda Poffenroth of First Na­tions and Inuit Health said problems such as skin infections and diarrhea on northern First Nations are not just about lack of water — and they’re not just a problem in Island Lake.

"Things like overcrowding really matter in determining whether or not this will spread between people in a home.

And poverty — access to resources like soap, towels, banda­ges — does matter in transmission of these organisms."

She’s not convinced of the value of teasing out the impact of each individual factor.

"There have been major improvements in access to water in First Nation communities in Manitoba in the last 10 to 15 years. There’s much more work to be done in that regard," she acknowledged. "The absence of outbreaks of Shigella and hepatitis A has made a huge improvement in people’s lives, regardless of the other concerns that do remain."

The northern chiefs are trying to take control of their own research agenda. Harper pointed out Health Canada is es­sentially investigating itself when it investigates outbreaks the federal government has contributed to by underfunding water services.

MKO recently submitted a proposal to First Nations and Inuit Health for funding to look at trends in communicable diseases and help First Nations prevent or respond to the next outbreak.

"When H1N1 hit, none of our First Nations was ready," said Walter Wastesicoot, who works for the northern chiefs.

"Today, they’re still not ready."

These stories were partially funded by a journalism award from the Canadian Institutes of Health Research.

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