we also once worked with a patient and her hematologist to advocate for access to a drug that wasn’t available in canada yet — nothing else was working and her health was deteriorating. she was eventually able to get the drug, which felt like a big win.
“photography is something i love to do,” says john clark, who lives with polycythemia vera. “it really helps keep me sane, especially over the last two years with the pandemic.” supplied
advocating for rare diseases can be tough. what advice do you have for other advocates?
another advocate once told me to focus on one or two things you want to advocate for at one time, and i’ve found that to be very helpful advice. also, know that things take time and that you won’t always have immediate success. plus, always take the time to look back and see all the changes and progress that has been made.
how has your experience as an mpn advocate changed you on a personal level?
it’s definitely made me more empathetic. i was diagnosed with an mpn (polycythemia vera) back in 1995, a time i would consider to be the dark age of mpns as there wasn’t much in the way of research. there weren’t any drugs specifically targeting the disease, and there wasn’t much available information for patients like myself.
i was fortunate enough to meet another mpn patient in the hospital who had been diagnosed a few years earlier and had done a lot of research on her own. she answered a lot of my questions and gave me support. we chatted and started talking about forming a support group. it was these early conversations that first got me thinking about advocacy. we formed the ontario support group in 2012, but she unfortunately passed away in 2016. she was active with the group right up until she went into hospital for the final time. her dedication to the mpn community inspires me to continue supporting and advocating for mpn patients.
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