Graeme’s story: Living a full life in the face of ankylosing spondylitis
For the hundreds of thousands of Canadians with inflammatory arthritis, the road to effective treatment can be rocky.
Arthritis comes in many forms beyond the rheumatoid arthritis and osteoarthritis we’re all familiar with. For those with ankylosing spondylitis (AS), one of a larger group of conditions known collectively as axial spondyloarthritis, the disabling effects of the disease can strike hard and fast, often at a young age.
Graeme Reed of Ottawa was 19 years old when he began to experience severe stiffness in his back. “I played a lot of competitive sports growing up and during my high school years: soccer, rugby, hockey,” says Graeme, now 28 years old and Interim President of the Canadian Spondyloarthritis Assocation (CSA). “As I transitioned to university, though, my body, particularly my spine, began to get increasingly stiff. At first, I attributed it to just not being in the same sort of shape I had been in before, but it eventually reached the point where it was clear that it was something more.”
Understanding the link between inflammatory conditions
For Graeme, as for so many with this condition, the journey to diagnosis was a frustrating one. Between X-rays, second opinions, blood tests, CAT scans, and referrals to multiple specialists, Graeme lived through four and a half years of pain, stiffness, fatigue, and increasing immobility before receiving a definitive AS diagnosis in 2016.
And that was relatively quick, in the greater scheme of things. The average patient goes seven to eight years before receiving a diagnosis, which is especially concerning given that AS is a progressive and systemic disease that, untreated, can lead to irreversible spinal fusion and increased risk of heart attack and stroke.
“The primary reason for the delay in diagnosis is that back pain is such a common symptom in the general population,” says Dr. Nigil Haroon, Co-Director of the Spondylitis Program at the University Health Network (UHN) in Toronto. “Roughly 50 per cent of North American adults have experienced significant back pain in their lives and there’s no single test you can do with adequate specificity to identify AS. There are some features, however, that can help us better identify AS. If there’s chronic back pain that’s inflammatory in nature, then about 15 per cent of patients will have AS. We can also have higher confidence if we see associated features like uveitis (inflammation in the eyes), bowel involvement, or inflammation in one or two other joints such as an ankle or knee.”
The connection between AS and inflammatory bowel disease (IBD), such as Crohn’s disease or ulcerative colitis, is particularly strong. Though less than one Canadian in 100 suffers from either IBD or AS independently, as many as 13 per cent of IBD patients also have AS. Graeme himself is in the subset of the population that lives with both.
The two delays to effective treatment
The unfortunate reality is that, though effective treatments for AS exists, many people not only suffer through a long diagnostic delay but must also endure a second delay before receiving a treatment that works for them. Worse, because of associated features like uveitis and IBD, there’s always the danger that treatment for one aspect of the disease may worsen another aspect.
First-line treatment for AS today still consists of traditional anti-inflammatories, though evidence for biologic treatments is strong. “When anti-inflammatories fail, nothing else works in AS; only biologics help,” says Dr. Haroon. “The guideline in Ontario is to try two different anti-inflammatories for four weeks each. If neither shows a benefit, then the patient goes on the biologics.”
Unfortunately, with so much conflicting information about biologics being disseminated, especially online, it’s essential that all patients talk to a health care provider to be sure that they’re receiving accurate guidance. “The most important thing I would say to someone who’s hesitant about biologics is that, as of today, there’s nothing else that has been proven to improve their symptoms if anti-inflammatories didn’t work,” emphasizes Dr. Haroon. “It’s important to remember that many patients have been on these biologics for almost 20 years, so we have so much medical experience. The benefits far outweigh the potential risks. And if patients have IBD alongside AS, then we can choose a biologic that’s helpful for both issues.”
With support, access, and advocacy, AS patients can have a bright future
As for Graeme, he was able to receive biologic therapy relatively quickly after his diagnosis. He recognizes, however, that he was lucky in doing so. “I first got on this medication in September of 2016, and it fundamentally changed my life,” he recalls. “It gave me back the life that I’d had before. I was lucky enough to have private insurance through my job, which meant I was able to access the biologics much faster than someone going through the public system.”
Through his work at the CSA, Graeme has dedicated himself to ensuring that every AS patient is empowered to advocate for equal access to treatment and an equal opportunity to write their own future. “It ends up falling on AS folks to advocate for themselves, as it often does for anyone living with a chronic condition that involves multiple different specialists,” he says. “But just because there’s a need to self-advocate, doesn’t necessarily mean you need to do everything on your own.”
Graeme’s own plans for the future are ambitious. In addition to heading the CSA and working full-time, he has recently begun pursuing a PhD and is simultaneously training for a triathlon. He recognizes that there are still challenges ahead, but also that maintaining a positive outlook is essential. “Health is about an individual’s well-being and that has to include not only physical well-being but also mental and emotional well-being,” he says. “I’ve dealt with feelings of helplessness and frustration myself and I’ve had some very low points. But there are also high points, and you can slowly learn to navigate your way through. Right now I feel good about the future.”