E-Patient Advocacy for Rheumatoid Arthritis: Annette McKinnon

Annette McKinnon is happy with the care she gets as a Canadian citizen. “Our healthcare system covers everyone. We all pay through taxes but all are in the group.  Doctors visits, physicals, imaging, most lab tests are fully covered. I know that a serious or lengthy illness will not bankrupt me.”

Being a patient in Canada has been important since McKinnon has Rheumatoid Arthritis (RA).  RA is a chronic, degenerative, autoimmune disease.  The body’s immune system starts attacking itself, especially the membrane surrounding the joints.  It is very painful and destructive.  RA is also a systemic disease, meaning the whole body is involved.  There is no cure for it, but the earlier it is caught, the better an individual’s chances of going into remission.

McKinnon also advocates for patients with RA. “RA changed my life plan, family dynamics and career. “    She has had RA for 30 years.  When she first began to feel bad, she went to her physician but he didn’t believe her symptoms.  “My GP (general practitioner) thought I was hysterical.  I tried another doctor. That GP said take 12 aspirin a day and come back in 3 months.”  Because of the delay in her diagnosis, McKinnon has joint damage,  “if I meet you, you can see by my hands I have RA.”

This is one of the reasons McKinnon advocates for improved education and awareness, especially among providers, “Not much time is spent on the musculoskeletal system in medical school I hear so we need to bring awareness of symptoms to Primary Care Physicians.”

Since her diagnosis, treatment for RA today has improved.  Yet because of the disease’s complexity, medications used in treatment regimes are even more complex. Corticosteroids and immune suppressing medications, like methotrexate, are used.   Treatment requires sophisticated multispecialty care.  Unfortunately building a specialist care team is often left to each individual patient.

That’s why support and information sharing can be so valuable.  “I… learned to advocate starting with me.” McKinnon says. “I share information with others with RA and provide support through online groups.   [I  also do] mentoring and patient partner activity in real life.”

McKinnon is also on the Board of the Sjogren’s Society of Canada.  Sjogren is another autoimmune disease characterized by damage to the salivary glands resulting in difficulty swallowing, chewing and speaking as well as affecting the tear glands causing sun sensitivity and dry eye.  It also can affect other organs. Around 30% of those with RA have Sjogren.

Additionally, McKinnon’s advocacy “centers on early diagnosis and treatment and access to very expensive drugs.”  This is because medications are not covered by Canada’s universal system unless you are low income.  She has also advocated on a national level working to get certain drugs approved by Health Canada, “I help advocate on how the healthcare money is spent and what diseases are funded for research.”

So, though she wishes that she did not need to rely on her husband’s insurance coverage to pay for her medications, she is otherwise satisfied being in Canada single payer system.  “I hear that a health plan member in USA gets on average 33 letters a year. I get none. No paper work.“

And she feels that’s something to smile about.

This post is based on the twitter chat #hchlitss conducted on September 27, 2012.  The transcript is available.