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The most at risk people in the world for developing rheumatoid arthritis are Aboriginal people, who are immediate family members of someone who already has the disease.
"Aboriginal people have a two to three times higher rate than anyone in the world," said Dr. David Robinson. "Rheumatoid arthritis is an ancient North American disease. It's been hanging out in North America for a long, long time."
Robinson is a rheumatologist at the Health Science Centre at the University of Manitoba, in Winnipeg. He has teamed up with Hani El-Gabalawy to study the causes and effects of arthritis in Aboriginal Canadians.
A Statistics Canada survey released in 2003 indicated that 19 per cent of the Aboriginal population living off reserve had physician-diagnosed arthritis. With an age adjustment (because the Aboriginal population is much younger than the overall Canadian population) that number jumps to 27 per cent. It's a stark contrast to the one in six non-Aboriginals that has arthritis. There are no on reserve figures.
"That data has not been collected and that's something that really needs to be addressed," said Quincey Kirschner, joint health projects director with Arthritis Consumer Experts, in Vancouver.
The high prevalence of arthritis in the Aboriginal population can be linked to a gene that is present in 60 per cent of the population. "Not everybody who has these genes gets rheumatoid arthritis," points out Robinson, "but lots do."
Elaine Alec, of the Okanagan and Shuswap nations, is one of those people. Diagnosed with rheumatoid arthritis when she was 22 years old, Alec fought a battle that included attempted suicide. "The first part, after the diagnosis, I had a lot of frustration, anger and depression," she recalls. In those days she could neither brush her hair nor attend pow wows because she couldn't bare to shake hands.
But this gene is not the only trigger for arthritis in Aboriginal people. There are other genes that may predispose the population to arthritis and Robinson notes that First Nations people who do have rheumatoid arthritis also have rheumatoid factor and anti-CCP antibodies in their blood.
Smoking also puts Aboriginals at a high risk of developing rheumatoid arthritis and poor dental hygiene may also be a link to the disease.
Robinson points out that rheumatoid arthritis is high with women immediately after childbirth.
"Rheumatoid arthritis settles down during pregnancy and then flares again right afterwards. The onset is frequently a few weeks after delivering a child."
As the number of pregnancies is higher in the Aboriginal population, young Aboriginal women are impacted at greater numbers than their non-Aboriginal counterparts. As well, women get rheumatoid arthritis at a two to one or three to one ratio to men.
Since 2005, Robinson and his team have been studying the Aboriginal population in Norway House and St. Theresa Point in northern Manitoba. They have applied for funding from the Canadian Institute for Health Research to extend their project another five years. In that time they are hoping to have 700 immediate family members (children, brothers and sisters) of arthritis patients signed on. "We expect in five years, five to 10 per cent of these relations may develop rheumatoid arthritis."
Through the study in which blood samples and other pertinent information will be collected, Robinson is hoping to identify more of the triggers that cause the disease. By reducing these triggers, he hopes that rates of rheumatoid arthritis can be reduced.
"We may be able to find markers that put people at a higher risk and to start to treat them early," said Robinson. "We know that (with) people in the general population who have rheumatoid arthritis that the earlier we treat them the easier the disease is to treat."
But identifying the triggers and treating them early is only one concern with the disease.
Kirschner notes that for many Aboriginal people, biologic response modifiers, which are classified as gold standard level of drugs and which can help fight arthritis, are not available through the federal non-insured health benefit drug reimbursement plan. "A really big problem in treating inflammatory arthritis in Aboriginal communities is that non-insured health benefits simply doesn't make available the medication that are proved to treat the underlying causes."
To access that medication, Aboriginal people, the majority of whom do not have private insurance, must dig into their own pockets to pay the expense and most cannot afford the cost. There are close to 100 types of arthritis with inflammatory arthritis accounting for 90 per cent. While one per cent of the non-Aboriginal Canadian population lives with inflammatory arthritis, five per cent of the Aboriginal population is inflicted.
Rheumatoid arthritis is one of the more common types of inflammatory arthritis for Aboriginal people, but ankylosing spondylitis (an inflammation in the spine highly prevalent in Inuit) and psoriatic arthritis (associated with psoriasis) are also high. Ankylosing spondylitis is "highly related to the genes," said Robinson, even more so than rheumatoid or the other group of arthritis, osteoarthritis, which has a "wear and tear" effect on the joints.
While not all arthritis needs to be treated with gold standard medications, "the most seriously affected people need these medications," said Kirschner. "We know that when Aboriginal people get arthritis they tend to be more debilitated by it."
NIHB does not reimburse for biologic response modifiers needed to combat psoriatic arthritis or ankylosing spondylitis. First Nations and Inuit people covered under NIHB have some of the worst access to medications in the country.
However, Enbrel, which Alec refers to as a "miracle drug" that helped turn her life around is covered under NIHB. But it's been a long journey for Alec to qualify for the expensive medication.
Alec began noticing stiffness shortly after giving birth to her son. Her initial steps to deal with the pain included talking with her Elders and using natural ways. When neither had an impact on how the disease was progressing, she met with a rheumatologist. That relationship has spanned eight years. "At first, I rebelled against him. I didn't like anything he had to say and every now and then, he reminds me of that!"
The major turning point came three and a half years after she was diagnosed. She was hospitalized after arthritis in her chest walls caused what seemed like a heart attack. Returning home, she concluded she could no longer live like that and overdosed on her medication. She realized what she had done and called her husband for help. In the hospital once more, Alec's rheumatologist met with her and this time she was ready to do what she could to fight the pain and the disease. However, before she could switch to Enbrel, she had to remain for one and a half years on a medication that was offering her little help; the results of this lesser medication was documented by her rheumatologist. Once she started Enbrel in December 2005 the changes were almost immediate. "I'm completely pain free. I've had three flare-ups, but I can take Ibuprofen to deal with it."
Alec is employed by the B.C. Ministry of Children and Family Development in the Aboriginal Youth Internship program,
In mid-February, ACE launched an awareness campaign of the drug coverage offered by NIHB.
"We're definitely writing a lot of letters and trying to set up more meetings with various elected officials," said Kirschner, noting that the organization is also in the process of replacing First Nations representative Joyce Greene, who recently stepped down for personal reasons.
As ACE works to raise awareness around the medication issue and the seriousness of the disease, Robinson's team works to raise awareness through call-in radio shows in Norway House and St. Theresa Point about the importance of maintaining a healthy weight, refraining from smoking, and practicing proper dental care.
"It is about education to some degree," said Robinson, who is optimistic that as his research team becomes clearer on the triggers that bring about arthritis, they will be able to discover ways to prevent it.
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