Scientists find diabetes link in Oji-Cree

By Joan Black
Windspeaker Contributor

Scientists at the John P. Robarts Research Institute and spokesmen for the Sandy Lake First Nation announced a genetic discovery last month that may lead to better prediction and control of diabetes in Aboriginal people.

The doctors have discovered a genetic mutation in the Oji-Cree of Sandy Lake, Man. that may hold the answer to that population's diabetes epidemic. The new gene has so far only been seen in Sandy Lake people, although other Native groups have been tested. The Cree in the Sandy Lake area do not seem to have the genetic abnormality.

Dr. Robert Hegele, director of the Blackburn Cardiovascular Genetics Laboratory at Robarts, discovered the mutation. Other principal researchers were Dr. Stewart Harris from the Centre for Studies in Family Medicine at the University of Western Ontario, and Dr. Bernard Zinman from the Samuel Lunenfield Research Institute, Mount Sinai Hospital and University of Toronto. Also delivering presentations were former chief of Sandy Lake, Jonas Fiddler, who holds the band's health portfolio; Deputy Chief Harry Meekis; Dr. Mark Pozansky, president and scientific director of Robarts; and Robarts scientist Dr. Tom McDonald, past chairman of the Canadian Diabetes Association National Research Council.

Dr. Hegele hailed the discovery as "the strongest genetic effect on diabetes that I have seen in 15 years of research. I am unaware of any other diabetic population in the world that is so strongly affected by a single gene variant," he said.

The Oji-Cree of Sandy Lake have the third highest rate of Type 2 diabetes in the world. A 1992 survey showed that 25 to 30 per cent of the population has diabetes; at least another 10 per cent have impaired glucose tolerance, which means they are at greater risk of developing the disease. Complications of diabetes include blindness, heart disease and stroke, kidney failure and gangrene, which results in amputations.

"Until 80 years ago," Dr. Hegele said, "few Aboriginal people in the Sioux Lookout zone had diabetes. In the last 10 to 20 years, diabetes started to be expressed at an epidemic rate. A gene or tendency was always thought to be there, but we think that the change in food and lowering of physical activity - plus the gene - results in diabetes."

In 1990, the people of Sandy Lake were so alarmed at the high incidence of the disease among their population that they asked their chief and council to approach Dr. Harris in Sioux Lookout to investigate the problem. Dr. Harris contacted Dr. Zinman and they undertook the survey, which confirmed the Sandy Lake people have five times more diabetes cases than the national average. Setting up protocols and methodology for their study took them three to four years.

At that point, they asked Dr. Hegele to get involved in testing for a genetic link. Dr. Hegele thought the problem was in the people's DNA, so he tested one blood sample from each of the 728 band members who agreed to participate in the study.

The results were startling. Dr. Hegele's group found that a person who inherited one copy of the mutated gene from their parents was more than twice as likely to have diabetes as a person who did not inherit the mutation. If a person inherited two copies of the mutation, however, he was up to 15 times more likely to have diabetes.

They also found that people with one copy of the mutated gene tended to develop diabetes in their thirties. On average, people with two copies of the mutation developed diabetes in their twenties. The findings were published in the March issue of the Journal of Clinical Endocrinology and Metabolism.

The researchers don't claim to have all the answers. They want to know why some people who do not have diabetes have the variant gene, which could indicate they are predisposed to developing diabetes, Dr. Hegele said.

They also found that 50 per cent of the people in Sandy Lake who have diabetes don't have the genetic mutation. Doctors suspect there could be yet another gene connected to the puzzle.

Finally, they say that two additional studies showed more than 100 people had a variant form of the gene, raising still more questions. And no one can say why eight Inuit communities or the Ojibway of Manitoulin Island they tested do not have the gene, although a high rate of diabetes exists in these places too.

"This discovery is a major contribution to further our ongoing research," Dr. Harris said. "Diabetes is emerging as a major epidemic among First Nations . . . and there is an urgent need to develop (prevention) strategies."
Drs. Harris and Zinman and the people of Sandy Lake decided they needed to do more than conduct laboratory research to get this urgent problem under control. They consulted with anthropologists and nutritionists and, starting in 1995, they set up a prevention program, which is ongoing.

One thing they did was to start diabetes education for Grades 3 through 5. They also aired a "Dr. Diabetes" show on the radio. Even the community's Northern Store assisted the project by agreeing to identify healthy food choices through the use of icons, colors and syllabics on their products. Health workers also undertook home visits to treat and educate those with diabetes.

Dr. Zinman said of the gene mutation discovery that it is important "but not earth-shattering." While he sees it as "an important advance" in doctors' understanding of diabetes, he believes the emphasis will have to remain on prevention through education for a considerable time yet.

All the doctors agree that it could be years before an effective new treatment for diabetes is found. Right now, even the test for the aberrant gene is not available outside the research lab and it is not covered by any health care plan.

"This announcement today confirms the importance of committing research dollars to finding new solutions," Harry Meekis said.


Attention to culture extremely important
By Debora Lockyer
Staff Writer

The Canadian Diabetes Association's 2nd Professional Conference and Annual Meetings were held on Oct. 14 to 17 and about an hour-and-a-half of the three-day agenda was devoted specifically to Aboriginal people and the disease.

Diabetes, as you know, is a growing concern in many Aboriginal communities. Some communities report that a large percentage to the membership have been diagnosed with the illness. One such community is Sandy Lake First Nation in Ontario, where the diabetes rate is 26 per cent, the third highest rate in the world.

Diabetes care and prevention programs have had little success in Aboriginal communities in the past, because physicians and educators did not understand the cultural aspects that go hand in hand with the treatment of the disease.

But that is beginning to change, and evidence of that change was seen in a number of the presentations in the Native focus sessions at the conference.

Judi Whiting was with the Saskatoon Health District and is now working for the Canadian Diabetes Association. Her presentation, titled Diabetes Self-care Practices and Cultural Beliefs of Urban Dwelling Aboriginal People with Diabetes, revealed some interesting things about what people believe diabetes to be and how it is best treated.

Whiting explained that the prevalence rate of Aboriginal people with diabetes living in Saskatchewan is about 11.5 per cent of the Aboriginal population. That compares to 3.5 per cent of people with diabetes in the non-Aboriginal population. Aboriginal people make up about 7.5 per cent of the total population of Saskatoon, so, according to 1996 population numbers, as many as 1,800 Aboriginal people in Saskatoon may have diabetes.

The study began with 50 people, more women than men, with the average age of the study group being 51 years and the average length of time the participants had diabetes being 8.9 years. In Saskatchewan the average age of diagnoses for Type 2 diabetes is 49 years old in the Aboriginal community as compared to 62 years old in the non-Aboriginal community.

For the most part, the people in the study did not explain the cause of diabetes in cultural terms. One-third of those studied believed that Indian medicine could cure the disease. One-third had taken Indian medicine before, and 10 per cent of the people were taking Indian medicine at the time of the interview. Only eight per cent of those studied believed doctors could cure the disease.

The length of time living in an urban setting seemed to impact the participants' beliefs in the effectiveness of traditional medicines.

But that didn't mean the people were buying into a more conventional approach to treating their illness. In fact, in many cases, the people did not have the self-care skills to help them cope and survive with diabetes. While 75 per cent of the study participants knew the symptoms of low blood sugar, only 30 per cent knew how to treat those symptoms. Only 54 per cent were testing their blood sugar levels and only 33 per cent knew about nutrition.

This is a population at risk.

The next presentation, title A Grounded Theory Study of Type 2 Diabetes in First Nations Adults, was conducted with the participation of 10 people on a reserve in southwestern Ontario. Diabetes was uncommon in Aboriginal communities as late as the 1940s, said Cheri Ann Hernandez, but the disease has now reached epidemic proportions. Hernandez first step was to review existing literature to get an idea of what others had observed in Aboriginal people with diabetes. She found that while some people blamed European settlers for causing the disease because of changes to the food and the environment upon their arrival, others blamed lifestyle or spiritual weakness for the disease in Aboriginal people.

Hernandez's 10 subjects, however, did not blame early Europeans for bringing the illness. They blamed themselves and their own behavior, including alcohol consumption, inappropriate food choices and other lifestyle choices.

The participants went through three stages. Having diabetes was the first stage where they denied that anything was wrong with them, longed for their normal life to return and minimized the effects that diabetes was having on their lives. People were too busy to take care of themselves or learn about diabetes, or just refused to recognize the significance of the disease in their lives.

The second stage, the turning point, demonstrated that a number of factors led participants to finally focus on life with diabetes. One woman suffered a variety of complications before she fully realized the seriousness of the disease. It was when her sight was endangered that she came to terms with the condition. Diabetes can lead to blindness, amputations, kidney failure, heart disease and a myriad other afflictions. Individuals in the turning point stage were focused on their diabetes, learning about it and how to live with it. They were preoccupied with their illness.

The third stage was what Hernandez described as the 'science of one.' In this stage there was integration of the personal self (the self that existed prior to diabetes) and the diabetic self (the new entity that emerged after the diagnosis of diabetes). These individuals became experts in their own diabetes, tuned into (listening to) their bodies and made regimen adjustments based on these body cues. The focus was on living, but on living with their diabetes.

Another interesting aspect to the study was that participants were insistent it was important that diabetics receive advice about the illness from people who had the disease themselves. It was not even important that the educator be Aboriginal, the study noted, just that the educator have this experiential knowledge about the disease. A subsequent debate on what is causing the increases in diabetes seen in Aboriginal people over the years led to a variety of opinions and theories. The feast and famine theory, describing a differing genetic make-up for Aboriginal people, one more suited to the traditional lifestyle of hunting and gathering, including the physical effort it took to get the food, was but one of those opinions put forward. Loss of traditional food and replacement of that food with the "five white gifts" brought to Indian nations from European settlers - sugar, salt, flour, milk and lard - are slowly destroying Aboriginal people, said one woman. The group was reminded, however, that diabetes may not be rooted in the same cause for all Aboriginal people across the country.