'i am number 12' campaign reignites push to start building a rare disease strategy
it has been almost a year since the government announced an investment of $1.5 billion over three years to support a national strategy for drugs for rare diseases, with no sign of movement forward.
4 minute read
canadians with rare diseases face delays in diagnosis, timely access to medication and care, stigma, isolation and even discrimination.
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we represent the one in 12 canadians who live with a rare disease. across canada, we face immense challenges — delays in diagnosis, timely access to medication and care, stigma, isolation and even discrimination – but that does not stop us from increasing understanding of the impact of rare diseases, advocating and sharing our stories in hopes of inspiring continued action. today, one in 12 canadians will be affected by a rare disease. they are a loved one, a friend, a colleague, or even yourself. progress is impeded by a multitude of challenges — including missed or delayed diagnosis and delays in access to new treatments. on average, it takes six to eight years before a patient receives a correct diagnosis. in this time, a patient will see an average of eight physicians and receive two to three misdiagnoses. when it comes to treatment options, canada lags other countries in approvals. treatments for rare disorders get approved up to six years later than in the u.s.a and europe, often resulting in avoidable disease progression, which only amplifies the effect of the diseases on the patient and their caregivers.
it’s estimated that there are almost 7,000 rare disorders. diseases like alpha-1 disease, cystic fibrosis, thrombotic thrombocytopenic purpura (ttp), sanfilippo syndrome, guillain-barré syndrome, immunodeficiency, sickle cell disease, mucopolysaccharide, hereditary angioedema, fabry’s disease, von hippel-lindau syndrome, and so many more, are affecting many canadians. and beyond those living with these illnesses directly, are their communities and networks of support — families, caregivers, healthcare providers, friends, and coworkers.
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where is the government’s investment in rare disease strategy?
in march 2023, the federal government announced an investment of up to $1.5 billion over three years in support of the first-ever national strategy for drugs for rare diseases, with funding made available to provinces and territories through bilateral agreements. this funding is to help increase access and affordability for innovative new therapies, support early screening, research and collection of real-world evidence, data infrastructure, development of better diagnostic tools, and more clinical trials, with the goal of improving the health of patients living with rare diseases.
‘i am number 12’ is an awareness campaign launched with 13 canadian rare disease patient organizations.
in october, the federal government announced the creation of the implementation advisory group (iag) for treatments for rare diseases to provide a forum for our community and stakeholders to give “patient-centred advice, share key information, and best practices that will inform the implementation of the national strategy.”
a comprehensive, solutions-approach to progress and action
thanks to the work of our rare diseases communities over many decades and canada’s new investment in a drugs for rare diseases strategy, we have an opportunity to implement meaningful change at a critical moment in our history.
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first, canadians need to rally behind the rare diseases community and help to raise their collective voice. when we unite our voices, we’re reminded that rare diseases are not so rare, and can impact all of us. the burden of rare disorders is significant, not only for those living with an illness, but on families, the healthcare and social systems, the workplace, the economy, and our collective social welfare.
second, patient organizations that directly support rare disease groups need our support. patient organizations (most being charities) provide community support, engage in essential advocacy efforts, work directly on canadian agency for drugs and technologies in health (cadth) and institut national d’excellence en santé et en services sociaux (iness) submissions that lead to access to new treatments, and connect members of rare disease communities.
since the covid-19 pandemic, many of our charities have lost revenue, while over half experience demand challenges. by providing support through donations, engaging with advocacy work, and even helping to amplify their messages through social media, we can help ensure these important organizations can continue their work.
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finally, provincial governments must prioritize implementing the national strategy for drugs for rare diseases. as we continue to wait for progress and action, lack of research, diagnosis, treatment, and access, will continue to impact canadians. signing the bilateral agreements and implementing this funding in a timely manner will bridge the delay gap, which benefits all of us.
the time to move the rare disease strategy forward is now
while this progress has been a significant improvement, canada has dramatically lagged on a global level in supporting rare diseases. we need to move from walking to running. we must continue our progress and momentum to support those with rare diseases in canada.
we are the one in 12, and we’re calling on your collective voice and continued support during this historical time to make a lasting impact on canada’s rare disease community.
ashley hickey (nova scotia), beth vanstone and madi vanstone (ontario), claudia caminiti (ontario), dr. aneal khan (alberta), elisabeth linton (ontario), gail ouellette (quebec), holly frances (alberta) kelly newell (newfoundland), Éloïse beaupré (quebec), martine landry (quebec), kerstyn lane (british columbia), somtochukwu ibezi (saskatchewan) and stephen parrott (ontario).
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i am number 12 is an awareness campaign launched with 13 canadian rare disease patient organizations: hae canada, immunity canada, alpha-1 canada, canadian fabry association, national gaucher foundation of canada, canadian mps society, gbs/cidp foundation of canada, answering ttp, regroupement québécois des maladies orphelines (rqmo), association des patients immunodéficients du québec (apiq), angio-oedème héréditaire du québec (aohq), sickle cell disease association of canada, canadian organization for rare disorders.
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