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It’s a Revolution for Rare Diseases

Rare Disease Advocates

It's a Revolution for Rare Diseases

Rare Disease Advocates

What happens to a person who finds out they have a rare disease? When you’re diagnosed with a condition that affects one in a thousand or one in ten thousand, where do you turn to find information, help, and support? Recognizing the need for that resource, a team of dedicated individuals on Rare Revolution, a magazine dedicated to spotlighting the rare disease community. Their goal is to bring about a dramatic and wide reaching change in conditions and attitudes for the rare disease community. We are honored to bring Rebecca Stewart, CEO of Rare Revolution Magazine, to the podcast. Her conversation with our host, Janet Kennedy, truly reflects our philosophy – People Always, Patients Sometimes.

Janet Kennedy: (00:50)

Welcome to People Always, Patients Sometimes. Today we’re really taking a patient perspective and we’re taking a unique look at patients who really need some attention right now, and those are the patients that reflect the rare disease community. With me is the CEO and founder of Rare Revolution Magazine, Rebecca Stewart, and we’re going to be talking about the thousands of patients who may not be getting the attention they deserve and need – those with a rare disease. Rebecca, welcome to the podcast.

Rebecca Stewart: (01:24)

Rare Revolution MagazineThank you very much for having me, Janet. It’s a pleasure to be here.

Janet Kennedy: (01:27)

I would like to think that we really are having a Rare Revolution, but is yours a call to action or a reflection of what’s actually happening in the rare disease community?

Rebecca Stewart: (01:39)

So to give you some context, there are over 7,000 known rare diseases, which affect globally 350 million people. So we’re the biggest, rare community that there is. It’s a huge number of patients, but of course, individually, each individual disease affects a small number. But globally it’s a huge health crisis.

Janet Kennedy: (02:05)

How about how the community is being served? Is this something where individual patients are truly having to learn how to advocate for themselves, or are they growing together as a community to speak and support each other?

Rebecca Stewart: (02:20)

I think there’s both. So, as a community, the rare disease community has both really good individual disease communities, mostly. Of course, there are those rare diseases that are so rare that there aren’t support groups, there aren’t patient communities. And so those people find themselves really quite isolated. And then collectively the rare disease community comes together to really help influence policy, to help influence healthcare, to help push for things like interest in orphan diseases, from pharmaceutical companies and research, and to support each other because individually, the individual nuances of each rare disease, whilst those might be very different, collectively people with rare diseases tend to have very similar problems; that’s access to expertise, access to healthcare, education, meaningful employment, social services. These are all shared problems. And so they can really support each other across disease. So, you know, really disease, agnostic support as well as the absolutely amazing job that individual support charities and organizations provide on a specific disease level.

Janet Kennedy: (03:34)

So what is the Rare Revolution Magazine role in all of this? What is your mission and how do you become involved in this community?

Rebecca Stewart: (03:43)

In 2012, my sister, who’s also my co-founder, and I actually began a disease-specific support group called Teddington Trust, which is to support families affected by the ultra-rare disease Xeroderma Pigmentosum. And through that, what we found was a real gap in our ability to raise meaningful awareness for the work that we did and for the condition and that it was done in a way that we felt was sensitively dealt with and valuable to us as an organization and a community. And we thought, well, we can’t be the only people that struggle with this. And of course, we discovered we weren’t. So Rare Revelation Magazine was founded out of a real gap in rare disease education and awareness materials. And what we wanted to do was to become a platform where it didn’t matter whether you were a patient, a caregiver, an advocacy leader, someone from industry, someone from research, or a healthcare professional: right across the ecosystem, you could come to us and both be heard, talk about the work that you’re doing, but also gain value and find information and education in what you read. But it was really important to us that the tone, the design, the curation was something that added value and was sensitive to people’s lives. And that’s really, our mission is to be a source of awareness, education, signposting so that people can find each other and really be a platform to elevate the voices of our communities. So we don’t speak for our community. We’re just here to elevate the voices of the community that exists and already do a great job.

Janet Kennedy: (05:24)

Well, you know when I look at the magazine, which is digital-only, is that correct?

Rebecca Stewart: (05:28)

It is. We do occasionally print them if we’re going to conferences in pre-COVID times, but you know, it’s a digital e-reader and then a website as well. So web-based content, and then the magazine itself has produced as a digital e-reader.

Janet Kennedy: (05:42)

Well, kudos to you. It is a fabulous looking magazine. It is so professionally produced. The photography’s incredible. Your design is great. This is not a newsletter typed out in your backyard. This is an amazingly beautiful magazine.

Rebecca Stewart: (05:59)

Thank you. And you know that was actually really important to us that I think when you have a rare disease or a chronic illness, you spend a lot of your time online carrying out research. And it was really important to us that when we produce this magazine, it was something that told a story, but it was really, it was, we spent enough time on our screens. We wanted something that was really lovely to look at that it was an enjoyable process. Because to us, that means people spend longer in the publication, looking at things and reading articles that they might not normally read and that we have found to be true. Certainly, our average time that people spend on the magazine is much longer than you might expect people to spend on digital content. And I think that is down to the amazing job that our two designers and also to our editor and chief creative director, Nicola Miller, who curates and has a hand in overseeing all of the publications that we do.

Janet Kennedy: (06:58)

Tell me a little bit about the process of putting the magazine together. You’ve mentioned over 7,000 rare diseases; well you’d think it would end up being something as big as the Encyclopedia Britannica. So how do you curate and where do you get your content and how is it put together?

Rebecca Stewart: (07:14)

Well, we do between three and four core additions of the magazine each year. And then on top of that, we do a number of spotlights additions, which tend to be smaller and more focused. And we will do three of those perhaps in a year. And then we have our online content as well. And when it comes to what themes we’re going to tackle, we keep quite a close ear in the community. We see where people are talking, what they’re talking about, what the current challenges are. But also people will reach out to us and say, you know, we have this condition, have you ever thought about covering it? And so we’ll put together an editorial calendar over the year that are topical things that are going on in the community or areas where we feel we can really reach out to the community and add value.

Rebecca Stewart: (08:03)

For example, we have just done an edition on inclusion, equity, and diversity. Prior to that, we have looked at rare bone diseases or rare cancers, rare kidney diseases. You know, what we’re trying to do with those core additions is have a very broad topic that we can encompass many rare diseases in under that. Obviously, Nicola and I will not live long enough to cover every rare disease at 7,000 plus, but we’re giving it a good shot and we’re doing it as best we can with these topics. And then with our spotlight additions, those really allow us to get very, very detailed on very specific subjects. And generally, those additions are brought to us by sponsors who have got a particular need to talk in an area and they want to really shine a light on something. And so we will work with those sponsors to produce those spotlights.

Janet Kennedy: (08:56)

And how do you vet out in essence, the difference between say paid and editorial content?

Rebecca Stewart: (09:02)

In our core additions, we have an editorial sponsor, but that editorial sponsor only has any control over the articles that they give us for that particular edition. Everything else is the copyright of the contributor and of Rare Revolution. So they don’t have any editorial control there, which really allows us to make sure that the conversations that we’re having are genuine and are not influenced by a sponsor. And even when we do our spotlight additions, which tend to be solely sponsored still in that situation, the sponsor does not have editorial control. And what we generally do in that situation is we will carry out all of the patient group and healthcare professional interviews; which again, allows us to make sure that we’re asking appropriate questions, that we’re keeping all of that content compliant and valuable. And we understand what our readers are looking for. So, you know, we very much have an input in any brief that’s being laid out for the spotlight edition. But in our core additions, over 90% of the content will be from individuals and charities. There’s very little paid-for content actually makes its way into those additions.

Janet Kennedy: (10:16)

Which makes it even more amazing that this is a free publication.

Rebecca Stewart: (10:21)

Yes. It is a challenge, I won’t lie. Our revenue stream for the magazine – we are a not-for-profit organization – but we’re not funded by grants. So all of the funding that we receive is through paid-for content. So things are tight. We’re not sitting here with a big fund or a huge team. We’re a very small team of eight. So we have four full-time, four part-time members of the team, and they do an incredible job of delivering all of the content that we do.

Janet Kennedy: (10:50)

I’m so impressed with the quality of the content. I think it’s really amazing considering what a small team you have. It’s just absolutely gorgeously put together. So kudos to you. Let me ask you a question about sponsors. And when we say sponsors, what I’m really asking is about some of the pharma community, some of the organizations that are involved in drug development for rare disease; how do you think that they can be more involved in supporting patients? I definitely see that there are more and more companies that are starting to have patient advocates. They’re starting to have patient engagement titles, but how are they connecting with the rare disease community?

Rebecca Stewart: (11:36)

I think you’re right. The role of patient engagement within pharmaceutical companies we have seen, I mean, although it’s been something that has been around for more than twenty years, I think really in the last five years, it has really grown and there has been more pressure on companies to really include the patient voice in what they are doing. And it is done very well and it has done very poorly. I think there’s still a long way to go, but we are definitely heading in the right direction in terms of how pharma is engaging with patient communities. I think it’s a really challenging area for them. Obviously, pharmaceutical companies, quite rightly so are heavily regulated and there are tight controls on how pharmaceutical and biotechnology companies can engage with patient communities. And that is all correct. And as it should be, I think there is a gap in that while patient engagement has grown and become better and become more prolific, the regulatory environment that surrounds that has not matured at the same rate.

Rebecca Stewart: (12:43)

And so I think there is still a bit of a disconnect between what could happen and what should happen and how comfortable pharmaceutical companies feel about doing it. I also think that in terms of where pharmaceutical companies go next, there’s a huge burden on charities and support groups in engaging with pharma. And they want to do it. Don’t get me wrong, It’s a burden that they want to take on. However, it’s a really complicated landscape and there’s an education gap there both for patient groups when it comes to navigating these complex pathways and also pharma and what’s appropriate in the way that they should engage. So I think there’s definitely some more education piece there that can be looked at to improve that. And I think some of that can be driven and come from regulators and overarching bodies in the space. I think the other area that we need to collaboratively look at is one of innovative medicines.

Rebecca Stewart: (13:43)

You know, we are in an era where we have gene therapies, gene editing, some really innovative therapies, and treatments, which are making their way into rare diseases, which is absolutely fantastic and amazing. However, with this kind of research and with these kinds of developments, there comes high prices for drugs and at the moment, there’s little, that’s understood about the way that these drugs will be paid for by payers. And so I think we are beginning to see the problems where we have, you know, I don’t know what it is, I think it’s several hundred gene therapies now in the pipeline through the FDA and EMA, but we’re very, very unclear as to how these will be paid for, especially in countries like the UK, where we have a national health system and we have an approvals process for that. So I think access to innovative medicines is really an emerging problem that really we need to tackle collaboratively.

Janet Kennedy: (14:44)

Well, the reality is patients can’t afford any of them. So somebody has got to figure that out.

Rebecca Stewart: (14:50)

Exactly. I mean, when you’ve got a single medicine in the region of over a million dollars and upwards, we have to look at how these are going to be paid for because to not have a treatment – only 5% of rare diseases have a licensed treatment. So we are desperate for more treatments within the field of rare disease. However, the only thing that is more desperate than not having a treatment is having a treatment, which has proved to be efficacious and safe and you cannot access it because either insurers or health boards won’t pay for it. And so there is a responsibility for everybody, I think to work this out before we suddenly have all of these drugs on the market and patients still not being able to access them.

Janet Kennedy: (15:32)

I can’t imagine a more heartbreaking situation is to know that there is a potential solution that you cannot afford to have.

Rebecca Stewart: (15:42)

Yeah. Yeah, exactly. And I think that’s something that really is a matter of priority. We need to be looking at. And some countries are. For example, we’ve just done some work in the Middle East with a particular additional focus on the MENA region. And some of their health boards are having dedicated advanced therapy panels so that they can look at it, become experts in that particular field of medicine, and start looking at it from an advanced therapies point of view. So I think there are countries that are starting to tackle and address this, but we do need to move with some speed, I think if we’re not going to have this kind of potential problem with access.

Janet Kennedy: (16:24)

Well, it sounds like advocacy has to extend beyond the easy advocacy. Sounds like the media, for instance, could step up and instead of focusing just on heart disease or diabetes or the well-known well-understood, and to be honest, well-funded diseases to really start to shine a spotlight on the rare community.

Rebecca Stewart: (16:49)

Yeah. And I think along with that, there is a responsibility for health journalism. And this is one of the reasons we exist is because typically health journalism when you come outside of those well-known diseases, is relatively poor. And what we tend to find within the rare disease community is that what journalists are looking for is a human interest story. And of course, they always want a very sad account of somebody’s life. And the problem we were facing with our communities and why we founded was because our patients weren’t finding that that was reflective. And they were giving lots of access to journalism to help raise awareness, but then they didn’t feel that they were being treated sensitively at the other end of that with some, you know, quite sensational headlines perhaps, or an account of their lives that they didn’t really feel was reflective. And I think for journalism, what would be beneficial I think is to move away from just focusing on those human interest stories, to talk about some of the really big challenges that we have within the rare disease ecosystem and start looking at things like drug prices, access, equity, for those with rare diseases.

Janet Kennedy: (17:59)

All right. I consider that a challenge now to mainstream journalism, to pharmaceutical companies, and to the regulatory bodies that are out there. So folks it’s time to step up and let’s really take a deeper look and not just look at the cover.

Rebecca Stewart: (18:16)

Absolutely.

Janet Kennedy: (18:17)

So Rebecca, I’m so impressed with the work that you are doing. How can we as private citizens, as individuals step up and help you?

Rebecca Stewart: (18:28)

Well, I think if we think of it globally, one in seventeen, or in the U.S. one in ten people has a rare disease. So pretty much everybody will know somebody that is living with a rare chronic disease. I think in terms of what individuals can do is just help to spread that awareness, be aware that there might be somebody within your community that is living with a really complex and challenging condition. I think we need to be, as we do with all disabilities, keep ourselves really open-minded really check ourselves to make sure that we’re not being discriminatory. You know, it’s one of these things that can be so ingrained in us that sometimes we don’t even know that we are being discriminatory in our actions. So I think always keeping that in the forefront of our mind and making sure we’re being fair. We’re giving people fair opportunities and helping our friends and our neighbors and our communities have access and the same sort of life that we would all want. So I think just being very open-minded and aware of who’s in your community and who your neighbor is, and just being good members of society.

Janet Kennedy: (19:38)

Excellent point. And actually, let’s do a little focus here on COVID and the Coronavirus and how that’s impacting the rare disease community. And you get to educate me a little bit here. I am assuming that there are members of the rare disease community, obviously immunocompromised, but who potentially couldn’t even take the vaccine. Would that be correct?

Rebecca Stewart: (20:00)

Yes. There will be some who can be vaccinated and some who can’t. I think we were still in the early days of data from COVID vaccines. And so some of that is unknown. I was involved along with quite a few other people in a project called ARDEnt, which was Action for Rare Disease Empowerment. And what we did was we came together very early on because we could see that potentially COVID 19 was going to have a disproportionate effect on the rare disease community. And we wanted to carry out a longitudinal study to see what that impact might be. And that as things opened up for everyone else, with things and services open up for those within the rare disease community, the same, and actually the information that we collected and the data that we looked up was quite harrowing. The rare disease community felt very, very left behind, very isolated. A huge portion of the rare disease community, where – certainly in the UK, where we had big isolation policies – where for the initial 12 weeks, anyone who was compromised had to completely isolate: as in, they could not step out of their property, not even for shopping.

Rebecca Stewart: (21:12)

So both my dad and I have nephews who have rare diseases and they both spent initially 12 weeks and then longer because it was extended. So I think by the time they were able to get out in any capacity, it was about 16 weeks spent entirely just in their home, reliant on people dropping food off on their doorsteps. And so very, very isolating and alone. And then I think as the rest of us have kind of come out and about, there are still those that are very immune-compromised that are still very, very cautious. We’ve also seen, you know, returns to services. So from a hospital point of view, when all elective treatments were stopped to make space for COVID wards, that also applied to many people’s rare diseases. And while some of these treatments might be deemed elective and non-essential, actually they are essential in terms of rare disease.

Rebecca Stewart: (22:12)

And one example of that is that consultants saw a big decline in those with neurological conditions, not because of disease progression, but because of the lack of things like physio, speech therapy, sensory play. Because these are deemed non-essential of course these were all cuts, all services that were cut. And we understand why they were cuts. And I don’t know that there was a solution to not do it, but the effect has been very detrimental to those people that have not had those therapies and services, which are really essential in their development and disease management. And that’s just one example of where the loss of services has been really detrimental.

Janet Kennedy: (22:58)

And continuing today because of our low vaccination rates.

Rebecca Stewart: (23:03)

Well, here in the UK, we are not too bad in terms of vaccination rates. I believe we’ve had a very successful vaccination program and I think the uptake has been pretty good. We are seeing a return to some hospital services, not as they were for sure, still very much telemedicine triaging, but it’s starting to make its way back. However, I think the waitlists now for many things are now running into the years, because there is a huge backlog of things that, of course, couldn’t happen during COVID.

Janet Kennedy: (23:38)

Well, it sounds like Rare Revolution Magazine is serving such an important connection for people to help find their communities to support those within their communities. And to even just educate both the newly diagnosed and those who have been dealing with their condition for many years. What I’d love for you to do is to tell people how to find you.

Rebecca Stewart: (24:02)

Yeah. You can find us online at rarerevolutionmagazine.com. We’re also on Facebook and Twitter and Instagram and LinkedIn. We are like I say a small dedicated team, but we are very approachable. So do reach out, connect with us on social, connect with us online. Or emails or you can reach us through email, so do get in touch. And if we can help and support your organization or your voice or your company in anything that we do, then please do reach out and say, hello.

Janet Kennedy: (24:33)

Rebecca, thank you so much for joining me for People Always, Patients Sometimes.

Rebecca Stewart: (24:39)

Thank you. It’s a pleasure to have been here.

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