Postal code health care and the real impact on Canadian lives

Christine MacFadyen

Charlottetown, PEI

“I was living a normal 24-year-old’s life and then, in a flash, it all changed. I’d just graduated with a degree in early childhood care and education, my passion. I’d started my first contract at an early childcare centre here in Prince Edward Island. I was ready to start saving for a house and planning for a family of my own. My future felt bright.

Then I started feeling nauseous, getting migraines and back pains, and urinating blood. Initially, I was diagnosed with a urinary tract infection and sent home twice. But when I finally went to the ER, blood work showed I was critically ill and on the verge of death. I was stabilized at the local hospital and then rushed by ambulance to Halifax. 

I still didn’t have a concrete diagnosis. I received a standard treatment for autoimmune disorders affecting the lungs and kidneys. For a month, I was hospitalized in Nova Scotia, a four-hour drive and $50 bridge fare away from my support network. There simply wasn’t a rheumatologist in PEI who could treat me.

Ten years later, I was hospitalized again with a severe relapse. This time, I was referred to the Vasculitis and Autoimmune Disease Centre in Toronto where they finally diagnosed me with granulomatosis with polyangiitis (GPA), a rare form of ANCA-associated vasculitis. Once that crisis had passed, my mother was able to find a rheumatologist in Moncton who could prescribe the medications for GPA, but I knew I needed to find a long-term care solution. GPA is a lifelong, incurable disease. 

To this day, I still travel to see a specialist in Toronto, because no rheumatologist in the Maritimes has the specialized knowledge of vasculitis I need. In fact, PEI only has one rheumatologist for 170,000 people. Postal code health care is massively unjust and a huge financial burden — I even had to declare bankruptcy. My mom, a single mother who has been my rock through all of this, had to work well past retirement age to help me cover costs.

My partner and I sometimes think about moving to Toronto to be closer to the specialists, but PEI is my home, and no one should have to leave their community to get the care they need. My mom is now 73, and I can’t uproot her to Ontario or leave her behind. I still dream of working with the children of PEI, or giving back to the island in another way. I’m active as a health advocate and know I’m making a difference. I’d like to start a podcast about health care, access, and rare diseases, but managing a chronic illness is already a full-time job.

I also need time to grieve all the things vasculitis has taken away from me — my career, fertility, mental health, independence, and even my identity. The old Christine is a faint memory. It’s taken years to accept my disease and the new person I need to be. But I’ll never accept the injustice of the health care system. I’ll keep fighting for better care here in PEI as long as I can.”

Karam Roberts

Vancouver, BC

“I’d been in Canada, on a work visa from the UK, for just over a year when I started getting symptoms that seemed like sinusitis, or maybe hay fever. There was a lot of smoke in the air here in Vancouver from wildfires at the time, so I thought it might just be that. But then it kept getting worse. My ears filled up with fluid. There was a constant excruciating pain in my face. I was disoriented, and I barely had the energy to stand.

I didn’t have provincial health coverage yet as an immigrant, so I was paying $200 out of pocket every time I went for an appointment at the local clinic. And each time I did go, I saw a different doctor, making it feel like I was restarting the whole diagnostic process from the beginning. With the help of my parents and my boyfriend, Matt, I paid thousands of dollars between the appointments, medications, scans, and blood tests before I was even diagnosed with ANCA-associated vasculitis. Financially, the ER wasn’t even an option. I did consider going back to the UK — where my mom is a nurse — to get care, but pandemic travel restrictions made that difficult and it wasn’t clear I was well enough to fly.

Once I was diagnosed with GPA in early December, I initially thought, great, they’ll get me on meds and I’ll be home by Christmas. What actually happened was that I had a heart attack and then caught COVID in the hospital. Since then, I’ve been trying to find what works for me in managing this incurable disease. 

The care I receive now, though, is absolutely incredible. I’m fortunate to have a great team of specialists within walking distance of my home in downtown Vancouver. And I finally have provincial coverage, which takes some of the stress off, although it can still be difficult to get access to therapies. I’m on a medication that seems to be making a difference, but it’s expensive and not yet widely available in Canada. I’m lucky that my rheumatologist was able to get me access to the treatment on compassionate grounds.

I also know that the damage to my organs that accumulated in the early stages of the disease will be with me the rest of my life. My lungs will never be the same. And, though the financial stress of treatment has lessened, I’ve been out of work for five years so far due to my health, and my career is in IT, where five years might as well be five centuries. On top of all that, my vasculitis could flare up again at any time. Matt and I used to travel all the time. Now, it’s very hard to plan for the future.”

Jon Stewart

Toronto, ON

“My vasculitis is granulomatosis with polyangiitis (GPA) — or Wegener’s granulomatosis, as it was known at the time — presented in the absolutely classic way. It started with a runny nose, a bit of leg rash, some joint pain, and fatigue. It then progressed through all the standard signs of an infection, but it didn’t respond to antibiotics. Finally, on Boxing Day, 1994, I crashed hard and ended up in emerg, nearly paralyzed by pain. I was diagnosed with Wegener’s by a very smart ophthalmologist within about six weeks, but I had no idea what that meant for me.

The internet just barely existed, so I took myself to the library. I found information about Wegener’s in the 1975 Merck Manual and it was immediately clear that this disease was the real deal. I recall that one hundred percent of the Wegener’s patients described in the Merck Manual were dead within two years, most within one. I started freaking out.

Fortunately, even though medicine moves slowly, there were research advancements for Wegener’s patients between 1975 and my diagnosis. I had more options than I would've if I'd been diagnosed 20 years earlier.

Over the three decades I’ve been living with this disease, I’ve been able to transition between treatments. One thing I’ve learned is that, with this disease, you always want to have options. It’s possible that your management routine might work for a while, but then can stop working. When that happens, you have to move fast.

The good news is that the research is moving faster these days, too. Unfortunately, access to treatments can be very slow. In Canada, specifically, we’re simply not approving medications fast enough. We’re last among G7 countries in this regard, and it directly affects patients like me. I’ve stayed afloat with vasculitis for 30 years, but now the key markers of my disease are rising again and I don’t yet know what my next move will be.
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Getting a GPA diagnosis changed every single thing in my life in a fraction of a second. Hope can be hard to find. I often think back to how I felt in 1994, reading those terrible prognoses, and I don’t want anyone else to ever feel the way I did. Driven by that search for hope, in 1997 I helped found Vasculitis Foundation Canada, and today I’m honoured to serve as its president. Our purpose is to help people care for their disease, and to understand and manage their vasculitis while we all work toward the cause and cure. We provide education, we provide community, we fund research when we can, and we help people advocate for themselves, which is sometimes the most important thing with vasculitis. Patients need to know what their options are, and that they’re within their reach. 

Every Canadian with vasculitis deserves hope and they deserve to know that they’ll have equal access to all therapies. Treating these serious, life-threatening diseases requires a full toolbox. You want to be able to throw everything at it.”

If you or someone you know is living with vasculitis, talk to your doctor for more treatment-related information.