S01 E01

Patient Groups in the Age of Covid-19


Durhane Wong-Rieger

Canadian Organization
for Rare Disorders

In the first in our summer series podcasts, Peter Brenders, Founder & President of Kontollo Health, talks with the President of the Canadian Organization for Rare Disorders, Durhane Wong-Rieger, about patient organization interactions with pharma.


Thank you for downloading the first episode of the NPC podcast from the National Pharmaceutical Congress. This program is all about discussing and considering the purpose, process and people of the pharma industry during the age of Covid. Today we're continuing the healthcare conversation by answering questions sent by listeners like you.

This program is presented in cooperation with Impres. Impres'  best-in-class commercial solutions drive top-line and bottom-line growth with maximum salesforce flexibility, speed and efficiency. Learn more about their next-generation commercial model at www.impres.com.

On today's podcast our guest is Dr, Durhane Wong-Reiger, president of the Canadian Organization for Rare Disorders. Your host for today's podcast is Peter Brenders of Kontollo Health.

First, here's Mitch Shannon of Chronicle Companies.


Thanks, Liona. It's common during the Covid crisis that there are more questions than answers. If you attended the spring or summer webinars of the National Pharmaceutical Congress, you may have had questions for our speakers, and it's very likely you didn't get answers because of time constraints.

That's the purpose of this new podcast series, getting you informed responses to the things that we in the life sciences need to know about the future of our business.

So let's get right to it. NPC delegate Dale Acorn is the executive director of the Canadian Foundation for Pharmacy in Mississauga, Ontario. Dale asks: "Is there any early feedback from customers on how they want the digital interaction with pharma to move forward? How much will stakeholders determine the direction pharma takes?”

To get some answers, our host, Peter Brenders, spoke with Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders: CORD.

Here are some highlights from their conversation.


So joining me today, I'm delighted to have Dr. Durhane Wong-Rieger, the president of the Canadian Organization of Rare Disorders, a true delight. And she's a true pioneer in terms of patient advocacy and awareness. And we're lucky today to have her join us for the NPC podcast series. Durhane, you've done so many things, and you've led so many patient engagement sessions over the years. But Covid came upon us, and part of the question out there is our world has changed, and I'll start it off with the first question.

How has Covid changed the interactions that patient groups and the pharma industry have been having over these last several months?


It has changed to some degree in terms of patients and patients lives and our interactions, but it really hasn't changed that much. I think what it’s done is that it's actually accentuated the edges that were there. Frankly, for us in the rare disease community, we're having better than ever kind of relationships with pharma and certainly those that serve the rare disease community. One of the first thing we did with Covid was to send out a survey for our patients. Find out, are you having an impact? Are you having problems getting access to medicines? What about getting in for your infusions if you have to go to the hospital? What about other medical services? And we also sent a survey off to our companies to say, Hey, are there any concerns? Do we need to be aware? Are we gonna have shortages? And what about clinical trials? And certainly for us in Canada, though, it's not the same internationally because, you know, I also had a rare disease international.

So we did the survey, partly internationally and also in our Asia Pacific groups, which I also serve as vice-chair on. In Canada we’re pretty, I think, good from the point of view, our relations with pharma. They're there to strongly support us. We do not get any sense that we’re going to have any kind of problem. And in fact, they've bent over backwards. They've actually held clinical trials. They've kind of made arrangements that, you know, if you can't get the hospital, we can actually do a whole lot more in terms of collecting data from home. We can get you to an alternative site. We can actually come out to you. So these are the kind of things that patients always wanted anyway.

Like, Why do we have to come in to fill out this questionnaire and have you can ask me these questions. Why can't we do this elsewhere? So that's actually helped.

Patients that need infusions. We've had pharma that has made arrangements. We don't want you in the hospital. Let's go here. Let's go there. Again, can we send somebody to you? And I think that's been a huge benefit. Also, we have had no real, I think, break in terms of what it is that we get in terms of support. Some of the companies have stepped forward and said, "Hey, you know, what can we do if you're trying to do outreach and education in terms of your patient community? You need extra support for that."

I will say, though, we've had huge problems for patients getting access to hospital services, health care services. Getting to their specialist, getting even the medicines, not because they are there because their pharmacy may not have any. So I think there have been huge problems in terms of the health services being ready for this, or finding alternative pathways. But with pharma we've had a great response, and we have been really impressed with how much they bent over backwards to try to accommodate.


So you say that pharma has been innovative in its approaches to try and to help patients get access to clinical trials, getting to new drugs and new areas as these changes. So would it be fair to say that Covid has actually been positive, in the tiny respect in terms of breaking down the inertia and change in care? And do you think this will last beyond the Covid pandemic?


Well, I'll tell you where we hope it will go, Peter. And that is some of the relationships between government and the pharma, the relationships between the payers and pharma. We have had tremendous feedback from even the governments that say we've never had such good relationships. When we asked them for something, they respond. We asked them to do this for us, and they can respond. Ask for insurances and they can respond. You do. I mean, we all know they're working hand in glove in terms of developing vaccines, looking at new therapies, expediting the access.

That, to me, is absolutely a positive sign that, “you know what? We can work together. We can do this, you know, in a collaborative fashion; we don't have to be natural enemies” which we've always been very puzzled by, from the patient community. You know, why are the most important forces in our lives, our governments, and payers, and our industry, you know, enemies of each other? You often felt like, you know, the kid in the middle of divorced parents trying to figure out, "How do we keep people from killing each other and coming together for the mutual benefit?"

I think that's something that we really would like to encourage. I think the other thing we've seen is some recognition, among others, including payers, that you know what? Bringing a drug to market, getting a new vaccine, is not just easy. There are in fact, you know, many vaccines that are actually in a trial. Eighteen in active trials. We may not get any of them, and we have 120 different therapeutics. You know what? None of them necessarily may work. It takes a lot of products that are going to fail in order to get to a positive.

It takes a long time to get a product to market. You have to be concerned about the safety of it. We see all those things and we say, yes, this has actually been great. The other thing that I think is really helpful for us, you know, again in the rare diseases is we kind of feel like, you know, some of the things we've been able to do in rare diseases are actually paying off in terms of Covid. I mean, you look at gene therapies and you look at how they're developing new vaccines. They are actually taken a technology of understanding everything from manufacturing antibodies. How do we actually re-engineer a gene in order for it to maybe perform differently once we put it into, you know, the body?

So all this kind of technology is actually, you know, something that we feel has actually been polished a great deal perfected a great deal in the rare disease world, right? You know what you're learning from rare diseases isn't just put that rare disease, There are tremendous benefits... So we're hoping that there will, in fact, be even greater interest in terms of supporting rare disease research and development.


You're listening to an interview with Dr. Durhane Wong Regier, president and CEO of the Canadian Organization for Rare Disorders.

So let's talk a little bit about government in the relationship and you've suggested that the relationship is better than it's ever been, that they're stronger engagement and you have some great hope. So does that translate into better access for patients in future drugs? And does that message carry over to the pharma industry to the point where you think the industry will not shy away from Canada due to all the other policy noise that we're hearing and on pricing and other pieces? Will drugs come to patients for rare diseases?


Well, we haven't seen that happen yet. I mean, that would take a minor miracle.

We're engaged right now in a battle to try to get a gene therapy for a child before he turns two in like, two weeks. You know, I reflect back on my initial experiences in terms of getting access to pharma says that, good gosh, we're still doing the same things. No, 14 years later, we're playing the same tune over and over again. So as the system improved in order to get better access to people for the most appropriate therapies, it's still hand-to-hand combat, you know, unfortunately, that still the case and even where we see the willingness to say we will invest in these therapies and bring them out quicker for Covid.

We have not seen that translate and say, Oh, yeah, this is an amazing therapy for a patient with a rare disease and therefore we should be trying to get them that same access. We have not seen that kind of thinking that we've tried to press it upon them, that what's good for a patient with Covid is certainly good for a patient has a rare disease. So I think we would like to see that, but we have not seen yet. The pricing PMP our view does not seem to have changed his tune in terms of the strict, strict price controls they want to put out there.

But we're hoping that maybe other players will be able to impress upon them that maybe, you know, this is not a bad news industry -- that we ought to be thinking about how we can collaborate and cooperate with them to bring these therapies to people faster. I'm hoping that we can, but if I can for working hard at it.

We don't see the natural translation of that, you know, certainly from the point of view of the payers, but I get we forced a lot of ground -- this was pre-Covid, right? -- towards managed access programs; towards looking at how we can, you know, provide people with the right kinds of options in terms of getting access; trying to get earlier access before they're symptomatic. I mean, all of these things are the things that Covid playing out. And I think if we can pick up on the Covid, it threats and put them back in and say, you know, I was going to say, You know before Covid, say rare disease. If you were to substitute rare disease for every single thing that you're doing on behalf of Covid, that actually would do a lot towards getting the right access to our people. So I think it’s still a hard battle. Not like you're waking up, you know, with new enlightenment in terms of rare diseases just yet.


So the government is investing heavily in trying to save lives through Covid, and to your words, if they would have transferred that activity in that interest in trying to save rare disease lives, it make a huge difference. I reflect back on that CORD, and you have done such amazing in-person policy conferences over the years trying to get that message across. But in-person meetings in Covid world and post-Covid are in question. What are you and what are the patient groups thinking about the future of in-person conferences? How will this work in the future?


In-person conferences will always be important. I don't think there's any substitute for it. And you know, I think you know as well as I do is not necessarily sitting in the room and listen to the speeches. That is the important things that go on in between, it's the personal relationships you make. I remember way back we used to push the guys going to the washrooms when the ministers going in and they hang out in the washrooms, waylaid them as they're heading over there. You get in there, guys, you know this is what's important, right? It's those in-between kinds of contacts, getting to know people as persons and being able to have them look you in the eyes and say OK, this is what I want. This is what I need from you, right?

So I think all of those will always be important to be able to see each other as humans. It’s a little harder to do, I mean, but I think we're making tremendous progress. As you know, we have a webinar that's coming up for this baby that's trying to get access to therapy. We've done it entirely, you know, through the, uh, you know, the Internet and through, you know, social media. And it's actually had a tremendous success because we also think that governments are paying more attention to social media. This is where they're also picking up a lot of their information. So I do think that the in-person meetings will be always important, especially we just had a call this morning about an international meeting.

And, you know, really, you cannot translate easily enough just through a Zoom meeting what would happen and for patients as well. We're getting more access to patients getting into scientific meetings. Getting at the conferences. Being able to sit on policy groups. We can only be effective if we're there in person. It's really, I mean especially coming into it, it’s somewhat intimidating. You can't jump into a zoom conversation as a patient advocate in the same way as you might be able to start off a side meeting with somebody and then get encouragement to come into the main meeting to make a point. So the in persons, I think, will always be important, and we're looking forward to trying to get those going again.


I'm Peter Brenders and you're listening to the NPC podcast.

So let's pick Durhane's brain a little bit and get some sage advice for the industry. I always love getting sort of council and frankly, blunt direction from you. Durhane, in terms of what's the smartest and best thing to do for patients. So what advice would you give to the pharma teams that are listening to the podcast in working with patient groups? What should we be doing? What should we do right as we continue to struggle through this Covid world?


We should continue to do the only thing that's always worked. These work for the companies that have really been there, and that is: start with the patient. I think that's been the success, and it's become more and more so. Understanding. I mean, as we know in the rare disease space. In many cases, it's the patients have gone out and found the researchers. It's the patients that have raised enough money maybe to attract the interest of some of the companies, so they've been at the center of it. But quite frankly, the companies have done the most and have been in the most successful are the ones that really do start with the patients, partner what the patients, really understand the patients, adapt and adjust -- not just in the clinical trials but in the product itself.

Can we continue to work with the patients? And I think that's been really, really valuable, and not just in terms of the delivery of the therapy, but everything else, right? And it's been amazing for us in the rare disease space. Um, you know, my reactions when a big company buys a smaller rare disease company is that what we fear we will lose most is the kind of personal contacts that those companies have with the patient community all over time.... You know, not because they are selling a product cause they know these people. They've lived with these people. They're like friends and family.

So that's what we need to continue to have. Start with the patients. I think what's happening now, though, what I'd love to see the industry doing in rare diseases, especially, is we would love to have companies think about global access. We said, I think a long time ago companies price drugs based on the fact that they're only going to get a small percentage of the patients that could be appropriate, right? We know that it's a fight to get access to them. Well, what if we could give you the whole world? What if I could say, Here's the patient world. I've got 20,000 patients. You develop your drug, we will help you make it available to the entire world.

What will you charge? What then? But it also means that you have to do some investment, right? You have to start with the patients. We do that well in the developed world where there's already clinics but where there aren't clinics. Can we invest in the clinics? I will say, you know, even today, you know, in Malaysia and Indonesia in other countries, China as well. Africa, where there are really successful clinics for rare diseases, is where companies have gone in and said, Let us help you get started. I mean, yes, we found a therapy that may also be effective here, but we're going to help you build that whole clinic and the expertise from the ground up so that we can support it. That, to me, is a strategy that actually could be replicated.

And that's what we like to think, you know, How can we make sure that as we're developing therapies that we think about global access and that we invest in the world, that really needs it? I mean, some of these new therapies coming out, we know that where they're going to be most needed is where the resource is being the least in terms of being able to make them easily available. Gene therapies are a good example, right? So how do we make sure that happens? I mean, it was like 20 or so countries coming together toward a Covid vaccine and saying, We need to make sure that when this we have a vaccine for Covid-19 that is going to be available globally. That, to me, is where we need to be. We’ve got a drug. We've got a therapy. Let's make sure it's available globally. Now how we're going to do it.


We have been listening to Dr. Durhane Wong-Rieger, the president of the Canadian Organization for Rare Disorders. She's given us some sage advice and counsel. And I think her message at the end says, "like we're doing in Covid, we need to come together. We need to be thinking about global access. And above all, start with the patient."

On behalf of the National Pharmaceutical Congress and this podcast series, I want to thank Dr. Wong-Rieger for her time today. And I hope you found this interesting.


Always interesting with you, Peter. You know that. Thank you so much for the opportunity.


Thanks to Peter and Durhane for those insights. If you want to share this episode of the NPC podcast with your colleagues, friends or social networks, just send them to www.pharmacongress.info.

You can subscribe to the NPC podcast and have it sent each week to your phone or inbox. Sign up at www.soundcloud.com or Pharmacongress.info. If you missed the last NPC webinar or if there are portions you'd like to revisit, it's available for you on YouTube. Just go to www.tiny.cc/npc-vid.

Registration will open soon for the 14th annual National Pharmaceutical Congress, which begins Wednesday, October 21st. Watch the website for details. And keep sending us your questions. We'll keep the conversation going and try to find you some answers.

Peter's next guest will be Dr. Shafiq Qadri: writer, family physician, parliamentarian and a good friend of this program. It will be out next week. The NPC podcast was presented in cooperation with Impres, Canada's Next Generation Commercial Partner. Learn more at www.impres.com. I'm Mitch Shannon of Chronicle Companies in Toronto. Our producer is Jeremy Visser. Your announcer has been Liona Void.

Have a great week and stay safe.