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rare diseases: 'it's difficult to get the government to understand the importance of adopting new drugs'

john clark, who lives with polycythemia vera, a myeloproliferative neoplasm (mpn), says one of the biggest challenges for people with an mpn is access to medication. his treatment costs $60k per year.

by vanessa hrvatin

feb 18 2022

4 minute read

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rare diseases: one of the challenges for people with mpns is drug access

john clark (left, with his wife, bea) was diagnosed with polycythemia vera in 1995, kicking off his involvement in patient advocacy. supplied

leading up to rare disease day on february 28, some of canada’s top rare disease advocates share how advocacy became a part of their lives, what they are fighting for and how they find optimism in difficult times.

myeloproliferative neoplasms (mpns) is a group of conditions sometimes referred to as blood cancers. there are three types of mpns — myelofibrosis (mf), polycythemia vera (pv) and essential thrombocythemia (et) — all of which originate in the bone marrow. mpns happen when abnormal stem cells produce an excessive amount of red blood cells, white blood cells and/or platelets. the disorders mostly affect people over the age of 50.

healthing spoke with mpns advocate john clark, who lives with pv, about his life as an advocate.

this interview has been edited for length and clarity.

what are some challenges the mpns community faces?

finding a hematologist who is knowledgeable about mpns can be difficult because, being a rare disease, the average doctor might not come across many mpn patients, if any.

the other challenge is that in some parts of canada there’s a real shortage, if not an absence of hematologists in general, so often, patients in those areas don’t have access to anybody that has knowledge of these cancers.

it’s also difficult to get the government to understand the importance of adopting new drugs as they come onto the market and making them available to patients. these medications tend to be pricey. the medication i’m currently on costs about $60,000 a year. fortunately, it’s covered in ontario, but only fairly recently has that been the case.

what role do you play in the advocacy world?

i am the coordinator of the mpn ontario support group which started back in 2012. we have over 100 members and we’re one of nine support groups across canada. there’s also an advocacy group at the national level, called the canadian mpn network .

one of my primary roles is helping patients advocate for themselves and making them more aware of the options they have to manage their disease. we also reach out to the patient community to inform them about ongoing clinical trials and encourage them to participate — one of the challenges with running a clinical trial in canada is enrolling a sufficient number of patients.

what is one advocacy effort that you’re especially proud of?

during the pandemic, we advocated for early second and third doses of the vaccine, and in many cases that has been successful. we worked in collaboration with other blood cancer groups to make this happen.

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.

what do you do for self-care?

photography is something i love to do. it really helps keep me sane, especially over the last two years with the pandemic. i’m mostly interested in landscape and nature photography.

what is your favourite treat?

i’m not just being politically correct here, but i think anything my wife bakes! apple pie and cheese scones are probably my two favourites.

vanessa hrvatin is a b.c.-based freelance writer.

interested in other stories about rare disease advocacy? read about catherine boivin’s life as an advocate for people living with spinal muscular atrophy.

february 28 is rare disease day, a global movement focused on improving equity in social opportunity, health care, and access to diagnosis and therapies for people living with a rare disease. for ways you can support canadians living with rare diseases visit the canadian organization for rare disorders. click here to join cord as it launches the year of action to bring canada’s rare drug strategy from vision to reality on february 24 .

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rare diseases: 'it's difficult to get the government to understand the importance of adopting new drugs'

john clark, who lives with polycythemia vera, a myeloproliferative neoplasm (mpn), says one of the biggest challenges for people with an mpn is access to medication. his treatment costs $60k per year.

what are some challenges the mpns community faces?

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what role do you play in the advocacy world?

what is one advocacy effort that you’re especially proud of?

advocating for rare diseases can be tough. what advice do you have for other advocates?

how has your experience as an mpn advocate changed you on a personal level?

what do you do for self-care?

what is your favourite treat?

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rare diseases: 'it's difficult to get the government to understand the importance of adopting new drugs'

john clark, who lives with polycythemia vera, a myeloproliferative neoplasm (mpn), says one of the biggest challenges for people with an mpn is access to medication. his treatment costs $60k per year.

what are some challenges the mpns community faces?

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what role do you play in the advocacy world?

what is one advocacy effort that you’re especially proud of?

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advocating for rare diseases can be tough. what advice do you have for other advocates?

how has your experience as an mpn advocate changed you on a personal level?

what do you do for self-care?

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what is your favourite treat?

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