The Canadian Organization for Rare Disorders (CORD) and the Canadian Cancer Survivor Network (CCSN) have a shared goal when it comes to getting people treated in Canada.
Rare Disease Day has given reason to highlight a common cause shared between our two organizations. As their name suggests, CORD advocates for those who have a rare disease, which they say affects one in 12 Canadians. But even though rare diseases affect that many people, each one is specific, and expertise in treating it may be limited.
We also know that rare cancers are particularly difficult to fight. Some experts say that nearly one-in-five cancers diagnosed are rare, and a further third of those cancers are considered particularly rare. Even though they are uncommon, these 200 or so different cancer types represent 22 per cent of all cancers.
But despite these numbers, there are still treatments available for these conditions. Unfortunately, they are not getting to Canadians. CORD says that 60 per cent of treatments for rare disorders are approved in Canada. Further, it takes around six years for them to become available to patients once they are approved in the US or Europe.
Our two organizations have worked to make sure that any changes to institutions like the Patented Medicines Prices Review Board (PMPRB) create affordable access to these medicines. CORD’s concerns are that the focus of driving medicine prices as low as possible is adversely affecting their availability in Canada.
The prevalence of cancer research in common cancers such as lung, breast, colon, or prostate creates a gap of adequate research on rare cancers. Often, information about rare cancers is hard to come by, and patients, caregivers and survivors might feel isolated in their journey. It is always good to talk about one’s illness with professionals and family members, as well as finding others with the same disease, perhaps through a support group or an online forum.
Rare diseases and cancers may be unique and individual, but together, they are anything but rare. With more research and better access to treatments, our understanding of these conditions will allow us to have better outcomes, and understand why these diseases occur in the first place.