Laurie is another member of CAPA, the Canadian Arthritis Patients Alliance, an organization that recently joined the movement by adding their name to the Declaration for Affordable Medicine. Laurie was one of the first people in Canada to receive a new Arthritis treatment, biologics. Today, she shares her story of access barriers to this life-changing new treatment. Her access story mirrors many that we hear from around the world today:
I have Juvenile Idiopathic Arthritis (JIA). I’ve been living with this disease since I was 14 years old. I’m a real veteran of this disease at the ripe old age of 36.
Going back to my story means going back to a time in my life that I would, frankly, rather forget. I’ve pushed it to the back of my brain but it’s always there.
My JIA came suddenly – initially forcing me from competing in a dance competition. Yes, I was very physically active before I got JIA, a competitive highland dancer. The arthritis quickly spread everywhere. I was now limping to school, limping to class and I quickly withdrew into myself. I was in complete and utter denial so much so that I competed for my school’s track and field team. This escapade landed me in an Ottawa hospital – an hour away from my parents – for 2 weeks.
By the time I was sent to a pediatric rheumatologist at CHEO I was 16,weighing only 100 pounds with no muscle the doctors and nurses thought I was anorexic. My sed rate was 130. They put me on methotrexate and things improved but not nearly enough to have a ‘normal life’.
The doctors told me to quit playing the piano. By this time, I was preparing for my grade 10 exam with the Royal Conservatory of Music. My career plans as a pianist and musician were quickly discarded.
The trips to the shopping mall with my friends were quickly replaced with trips to see my pediatric rheumatologist in Ottawa with my Mom. She would try to cheer me up by bringing me shopping at the malls here. For one year, I was at my rheumatologist’s every month at least, and for a large time, weekly, far different from dance and track and field competitions.
Mom pleaded with my rheumatologist to do more, telling them I was moaning in pain in my sleep. When I woke up in the morning, the stiffness and fatigue would be too much, arriving at school late, often not until 10:30 am, hardly able to learn and concentrate. By my final year of highschool, I could hardly keep up in Calculus class – a class I needed to be considered in the program of my choice in university. My parents got me a tutor and I made it to university.
In university, things were more stable because I took the maximum dose of methotrexate. After receiving my shot, I would vomit for an entire evening. My roommates sadly looked on and checked in on me to make sure I was OK. I would time my weekly injections so I could miss as little class as possible.
But still, when I was 21, I couldn’t suffer through this anymore. The side effects were getting harder to manage. But my rheumatologist told me there was nothing more to do. A sobering message for someone to hear, particularly at 21. Most young adults were dreaming of the future. I was dreading mine. My parents were infuriated when they heard this and found out there was a new drug approved in the US to treat Rheumatoid Arthritis (RA). So we went to Boston and I was prescribed one of the first biologics developed for RA. I felt amazing and noticed a response 12 hours after the first injection. My parents paid for it out of their own pocket to the tune of $20,000/year. I was incredibly lucky that for 18 months, they were able to pay $1,800/month for my medicine. Eventually I was approved for using it through Health Canada’s Special Access Program.
To this day, my Dad jokes that it was a good “investment”. I suppose anyone who could would do this for their child, but they shouldn’t have to. Even now, I feel like a part of my childhood was stolen from me. The damage in those first 7 years was severe and haunts me to this day.
Thanks to the biologics I’ve been on for the last 15 years, this broken body can still do a lot. I exercise vigorously three times a week, I am gainfully employed as a human resources professional, I married to a wonderful man who has endured a lot with a sick wife and I have given birth to two beautiful children. They make me work hard to stay well.
I was lucky my parents were willing to move mountains to get me my medicine. In my role with Canadian Arthritis Patient Alliance, I still see people struggling to pay for all their medicine costs. I also know that when my body becomes desensitized to this medication, I will have to try another. In the back of my mind, I’m fearful that it will be another one that will be exorbitantly priced out of my reach, but I’m also hopeful that initiatives like Access Our Medicine are indicative of a coming change to a system that values human lives equally, and a system that refuses to price life-saving medicines as luxury items.
I’ve signed the Declaration for Affordable Medicine so that we can start to rethink the way medicines are developed and distributed. Join me by signing at www.accesssourmedicine.com.
