In this episode of Impetus Digital‘s Fireside Chat, I had the pleasure of speaking with Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders. We explored a range of topics related to rare disease treatment and advocacy, including how to best involve patients in all aspects of the drug lifecycle and innovative approaches to drug access and financing.
Here is a sneak peek of our conversation:
Q: With all of the scrutiny and this worldwide pandemic, you can’t have more people behind one single interest than this [COVID-19]. However, we still can’t seem to get the population, infrastructure, dynamics, and the people, around the simple fact that we need the data. How can that affect what you’re doing? Should it be used to leverage the momentum behind what you’re trying to do with rare diseases and cancer?
A: Well, thank you. You’ve given me sort of an opening for talking about something that’s very exciting for us right now. It was before COVID, and yet we’re plowing through with COVID in terms of rare diseases. That’s exactly what we’re saying, it’s a big question. Again, it’s that old notion of “how do you eat an elephant?”. It’s like one bite at a time, shrink it down to what we can. With the pandemic, we can’t shrink it, it’s all around us. We have to deal with the whole big, enormous issue. In other areas, let’s shrink it down.
Right now, in fact, on December 16th, we’re going to be launching our consultation towards something that the Federal Government promised to us in February 2019, their budget of 1 billion dollars to set up Canada’s rare disease drug strategy. This will be a program that will look at how do we bring in medicines for rare diseases and make them available to people. It’s more than just “Okay, can I get the drugs in?”. It has to do with getting a diagnosis and the right diagnosis, otherwise, it doesn’t work.
It has to do with supporting centers of excellence. We’ve got clinicians. Especially, many of these therapies such as gene therapies, very complex therapies, require expertise in order to be able to even provide them. How do we actually have the support communities around them and the post-market surveillance? How do we get people to be able to have ways in which they can monitor the outcomes of these treatments that they don’t have to be actively engaged? All of these things come together.
What the government said is that “we’re having huge issues in making these, in many cases, very expensive therapies available to Canadians. We’re not really sure that we’re getting the value out of them. Are they going to the right people? Are they actually having the impact that they want? Put together a standalone drug program that will be for rare diseases without defining too sharply yet what is a rare disease or not, because as we were talking about, many of these cancers are going to be rare diseases. Many of these cardiovascular diseases are going to be rare diseases.”
They are actually going to need to benefit from the same kind of a strategy, get the diagnosis right, get to the right specialists, train up the specialists and even invest in the research so that we can develop some of these therapies ourselves. Then, make sure they’re available to the right people to monitor and manage them.
Even with all that testing, we might not necessarily get it right. Not everybody’s going to benefit. Not everybody’s going to have the level of benefit that we anticipate. How do we make sure that we’re monitoring that? It’s either improving what we’re doing or maybe moving people to do something else? All of that is part and parcel of what we’re trying to do in setting up what we’re calling a “pan-Canadian rare drug program.” This could, for me, be the proof of concept. It would be proof in terms of how precision medicine could work. We want to be able to make sure that we’re taking the best advantage of all those things that we’re talking about…
For more of our discussion, you can watch the whole Fireside Chat with Durhane Wong-Rieger, or listen to the podcast version, below.
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