Why are Canadians living with rare diseases waiting for treatment? - via healthing_ca RareDiseases raredisorders healthing health RareDisordersDay
Durhane Wong-Rieger says the strategy must focus on building infrastructure that will make it possible for clinical trials to be done effectively and efficiently in Canada so more companies will be inclined to market their products here. Currently, only 60 per cent of treatments for rare diseases make it into Canada, and most get approved up to six years later than in the USA and Europe.
“This is where we think the biggest change will happen with this rare disease drug strategy,” says Wong-Rieger. “We need to approve these drugs, make them available now, and then have the infrastructure to monitor patients in real time to see how they’re working. The drugs are there and could make a profound difference in peoples’ lives, so we don’t need to wait until we have all the evidence or until we’ve done these big clinical trials.
“We got the vaccines and learned they were waning after four months just by studying patients in real time,” she says. “We’re not asking for money to be put toward drugs — that’s a given, just like having the money for vaccines was a given. We need the $1 billion to be invested in setting up clinics, communications and long-term monitoring, just like we’ve seen with COVID.”
Wong-Rieger says the rare disease drug strategy likely won’t consist of a fully fleshed out framework; it needs to be flexible as new infrastructure is put in place and more innovative therapies become available. And if Canada gets it right, she’s hopeful this strategy could act as a blueprint for other diseases.
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