Did you know that some forms of arthritis, like Rheumatoid Arthritis, Lupus and Juvenile Idiopathic Arthritis, are more common in Indigenous people? Health outcomes are also worse when considering pain, fatigue, sleep, quality of life, and mortality. Dr. Cheryl Barnabe is a Calgary-based rheumatologist and a member of the Metis Nation of Alberta. She has a unique practice focus serving Indigenous people with rheumatic conditions both on-reserve and in an urban Indigenous primary care service. She is also a health services researcher meaning she studies the organization of the health care system and identifies improvements or gaps in care.
Dr. Barnabe joined the ranks of rheumatology when treatment options for people with rheumatic conditions shifted in the early 2000’s. While attending her residency program interviews in Vancouver, she opened up the curtains of her hotel room and directly outside the window was the Mary Pack Arthritis Program clinic. This chance encounter combined with a personal family history of rheumatic disease kept her on the path to rheumatology, instead of other medical specialities like dermatology.
She started working with First Nations communities as a medical student and once she completed internal medicine training in Winnipeg, she moved to Calgary to train in and then practice rheumatology. At that time, patients had access to biologics, and this was revolutionizing the treatment of rheumatoid arthritis. However, she remembers a person from a First Nations community that visited the clinic, and this person was still on gold therapy – one of the earliest treatments for Rheumatoid Arthritis 75 years ago and no longer used today. This person was unable to access better therapies because they could not find transportation to access newer intravenous treatments in specialized clinics. “It was the mid 2000’s, and we should be doing better” says Dr. Barnabe. Logistical barriers like this are all too common combined with restrictive formulary options through the Non-insured health benefits (available to some First Nations and Inuit people) and other systematic barriers and racism in health care. The health situation for this person was in stark contrast to other people with rheumatic diseases that she saw – this pushed Dr. Barnabe to reflect on what she was going to do as a rheumatologist to change the situation.
She decided to provide rheumatology care directly to people in their own home clinic and community. This was more accessible for the community and Dr. Barnabe notes: “It makes sense for one person to travel to see them, instead of 100 people coming to see me.” The care experience is different for the community too – they come to a familiar clinic location where people are conversing in their own language. The clinic visits focus on building relationships. Not only is she trying to get to know the patient but Dr. Barnabe shares who she is, i.e., Métis-born and originally from the Red River area of Manitoba. Team-based care is the norm and primary care physicians are also part of the clinic. The physicians know each other well and pick up the phone (no fax machine here!) to provide holistic care to patients.
Dr. Barnabe is sharing her expertise with rheumatologists across Canada. She teaches them how to better communicate and engage with Indigenous people with rheumatic diseases. “We practice together to bring culture into the treatment journey.” The cohort has grown and now the original program participants are now teaching other rheumatologists.
When asked what patient organizations, like CAPA, can do for Indigenous people with rheumatic diseases, she noted the importance of translating resources into different Indigenous languages and adapting educational resources to use culturally appropriate words. The people in her clinic note the value of peer support and connecting with each other.
In reflecting on our conversation, I hope that we can see rheumatology care change to better support Indigenous people with rheumatic conditions. We need to better support them to ensure we do not leave them even farther behind.