Featuring a conversation between Denise Balch, President, Connex Health and Rachael Manion, Executive Director, Canadian Skin Patient Alliance (CSPA). A lawyer by training Rachael has spent time with 3Sixty Public Affairs as a Senior Associate and Director of Research, and Legal Counsel at the Department of Justice, Government of Canada.
In this podcast Rachael Manion and Denise Balch will speak about Rachael’s dedication to patients, and the challenges of timely access to medications for patients and the impact of prior authorization requirements. Her exposure to patient experiences has led the CSPA’s development of an interactive drug coverage finder Is My Prescription Covered. She has also been active on the working group of the Simplify Prior Authorization (SPA) initiative and the development of the new online stakeholder resource launching later this month.
Listen and learn from Rachael Manion how what more can be done to improve the patient experience when they are prescribed a drug requiring prior authorization.
You can find a copy of the original Simplify Prior Authorization white paper and links to our articles, podcasts and blogs at www.simplifypriorauth.ca.
Featuring a conversation between Denise Balch, President, Connex Health and Rachael Manion, Executive Director, Canadian Skin Patient Alliance (CSPA). A lawyer by training Rachael has spent time with 3Sixty Public Affairs as a Senior Associate and Director of Research, and Legal Counsel at the Department of Justice, Government of Canada.
In this podcast Rachael Manion and Denise Balch will speak about Rachael’s dedication to patients, and the challenges of timely access to medications for patients and the impact of prior authorization requirements. Her exposure to patient experiences has led the CSPA’s development of an interactive drug coverage finder Is My Prescription Covered. She has also been active on the working group of the Simplify Prior Authorization (SPA) initiative and the development of the new online stakeholder resource launching later this month.
Listen and learn from Rachael Manion how what more can be done to improve the patient experience when they are prescribed a drug requiring prior authorization.
You can find a copy of the original Simplify Prior Authorization white paper and links to our articles, podcasts and blogs at www.simplifypriorauth.ca.
My name is Denise Balch and I'd like to welcome you to the next in our Simplify Prior Authorization podcast series. Today we'll be talking about the role of patient groups in prior authorization, and I'm fortunate to be joined by Rachael Manion, who's the executive director at the Canadian Skin Patient Alliance. Prior to joining CSPA, she was a consultant with a public affairs firm and lawyer with the Department of Justice. She has a law degree from the University of British Columbia and an honours degree in mathematics from Dalhousie University. Rachael, thank you for joining us today.
Rachael Manion:Thanks, Denise, it's a pleasure to be here.
Denise Balch:Maybe you can tell me a little bit more about yourself and the Canadian Skin Patient Alliance before we get started.
Rachael Manion:I'd love to. The Canadian Skin Patient Alliance was founded 15 years ago, as a home for anybody in Canada who's impacted by a skin, hair, or nail condition. There are more than 3000 of these types of conditions, and about 1000 of them are actually rare diseases. So there's a lot of diversity in the skin patient community, and there's not a great deal of awareness about the impacts of these diseases, and how people's lives are really transformed when they when they have some of them.
Denise Balch:So when we talk about prior authorization and specialty drugs, then many of your patients are probably exposed to the prior authorization process and are taking specialty drugs.
Rachael Manion:That's true for some of the skin patient communities, Denise. In treating skin conditions, when you think of the 3000 different kinds of conditions, we don't have a great deal of tailored treatment options. There's a lot of off-label prescribing in dermatology because we're using tools for the purposes for which they weren't necessarily initially developed. But we do have some communities that I'm thinking of the psoriasis community, urticaria, atopic dermatitis, and melanoma communities. There are also different communities of skin patients who are treated with rituximab. So there are a lot of folks who - actually I shouldn't shouldn't leave out the Hidradenitis Suppurativa community as well. So there are some specific skin patient communities who have benefited from the development of certain biologics. And now we're into some of the Janus kinase (JAK) inhibitors, which are some of the more advanced treatments, as well as immunotherapy in the cancer space for people living with melanoma, and increasingly other types of non-melanoma skin cancers. So, yes, there are some skin patient communities that interface with the prior authorization process quite a bit. And then there are others for whom we hope that this is in their future, as nutrients continue to be developed.
Denise Balch:No, absolutely. And of course, we know that much of the new drug development is in specialty space. So what, maybe you can tell me, are some of the common goals that patient groups share. So groups not only like the Canadian Skin Patient Alliance, but some of the other patient groups that are out there, and maybe, what are some of the differences as well as the commonalities?
Rachael Manion:Well, I think every patient group has its own story. And I think that one of the main commonalities across those stories is the desire to help people who are going through a difficult, stressful, often painful and confusing time, and how that sort of is brought together. In terms of the mandate of a patient group - it can vary widely. There are dozens of patient groups here in Canada that focus on specific communities, and at the Skin Patient Alliance, We work with over 30 specific Canadian patient organizations that work to educate and to support specific skin patient communities, whether that be scleroderma, psoriasis, eczema, melanoma and skin cancers. So there's a lot of variety out there, and some of them are volunteer driven, some have professional staff, some fund research, some do a lot of advocacy, some offer support groups. So how they understand the needs of their community, and how they respond to them can really differ. But ultimately, I think we're all here because we recognize that patients lives and the impacts of their conditions on them doesn't stop when they leave the clinic office. Sometimes the really hard work is to get them into a clinic to get them diagnosed, to get them on a treatment plan that works for them. And sometimes our work starts when they when they leave that clinic environment. So Though there is a lot of passion, and there is a lot of commonality in terms of being driven to help people. But how we do that, where we do that? And what tools we use to do that vary quite a bit.
Denise Balch:So there's a lot of diversity in patient groups, and it's very interesting to hear the different, you know, services and roles and functions that patient groups play. In terms of the Canadian Skin Patient Alliance specifically, why do patients reach out to you? What is that connectivity?
Rachael Manion:Well, at the CSPA, we do a lot of work to help educate and inform people about different skin conditions and the impacts of them. We also do a lot of advocacy, that sort of it often looks like work that's happening in the background. But, you know, we want to make sure that the healthcare system that we have today is working well, for skin patients, we want to make sure that skin patients have access to treatments that work well for them that are safe, effective, and really make sense for them. We want to make sure that the healthcare system, and in terms of the health care system's infrastructure, that that is stable, sustainable, and really geared to ensure that skin patients have great health outcomes and really good quality of life.
Denise Balch:Excellent. And to what extent is timely access to medication an issue for patients in the dermatological space, and what do you learn from your patients?
Rachael Manion:Well, I think one of the biggest hurdles that we face as a bigger community, as a community of skin patients, is often a sort of misapprehension that skin conditions are just a rash, they're cosmetic, or they're not really a big deal, they don't really impact people that much. And so when we have newer treatments, when we have tailored treatments coming forward that quite frankly often have a bigger price tag, that they're not necessarily as urgently needed. And I just want to say, unequivocally, that's false. There are a lot of chronic skin conditions that do require ongoing management. And when they're driven by inflammatory processes, they can contribute to fatigue, they can contribute to worsening periods of disease, like flares, and other types of issues that mean that we really have to address a lot of the stigma around skin conditions in order to ensure that people who are making these decisions and reviewing these files recognize the unmet needs in our community and the urgency for many people to have access to a new treatment option.
Denise Balch:Yeah, no, absolutely. I can appreciate that. What about other patient groups? You know, to what extent have you had discussions with other patient groups? Or do you discuss on an ongoing basis, that timely access to medication- like, in terms of sort of an overview of patient groups, you find that they struggle, their patients struggle with this? And they're often asked about access issues?
Rachael Manion:Absolutely. I think most of us, in this space, encounter timely access to medication as a challenge. And many of us talk together, either through a formal network or formal coalition, or, you know, informally, we do chat together about the issues that are being faced by specific communities, because everybody looks a little bit different in terms of what those barriers/delays/challenges are. The system that we use in Canada to come up with those decisions by payers, but whether or not they're going to cover something is really long. And that has to do with the structure of Canada as a federation. But mostly, it's really a long process. And there are so many steps along the way. Specifically to get things on public formularies. But we know this is also an issue for for private formularies as increasingly as private drug plans, look to the analysis that's done for public Drug Formularies to make their decisions.
Denise Balch:Yeah, no, absolutely. Yeah. So to help combat some of these challenges, I understand that the CSPA has developed an interactive drug coverage finder and I believe that people can access that via the Canadian skin dot CA(www.canadianskin.ca) site, is that right?
Rachael Manion:That's absolutely correct. We built this tool to help people figure out whether or not they actually had access to coverage. So some people already know that they're covered either under a group benefits plan that they got through work, or they're covered by the government drug plan put out in their province, or by one of the federal programs. So that's not a huge issue for them. But within those, there are often multiple different drug plans. So we talked about whether it's something is covered, but there's not actually a lot of deep understanding about where it might be covered, how it might be covered when it might be covered. And so what we did is we synthesized all of the public drug plans in Canada. And we created a yes or no module. So people just have to answer the questions, yes, or no. They don't have to tell us anything about themselves, their condition or what drug they're interested in. And this tool walks them through, as I mentioned, a series of questions to help them understand, or figure out, rather, whether they're covered by a specific drug plan. And if they are, it takes them to that drug plan site, and they can search up that specific medication and figure out if it's covered for them.
Denise Balch:No, that's fantastic. And I think in the past discussions that we've had about this site, it's not just for patients with skin conditions, right? It's for any patient, is that right?
Rachael Manion:It's for any patient in Canada. It was a very similar process to build it for everybody, as it was to build it for the 3000 different kinds of skin conditions that there are. So we did that, we built it as a resource for everybody in Canada.
Denise Balch:And just to confirm with people, and we'll put this in the written promotion, that the site is Canadian skin dot CA backslash is dash, my dash prescription dash covered question mark(www.canadianskin.ca/is-my-prescription-covered?)
Rachael Manion:That's correct. It's also available in French. So the entire system is available in both English and French. It was really important to us as a national organization that we're offering the same resources in both of the official languages.
Denise Balch:Yeah, no, absolutely. No, that's great. Well, I think that's something that's been, sadly, you know, badly needed, rather. So let's switch tack a little bit. So if patients have group benefits coverage, and they claim through their benefits plan, there may be a Prior Authorization requirement for the drug that they've been prescribed, which is, you know, kind of why we're talking today. So, in terms of the impact, how does it really impact patients based on your experience, what's the feedback that you get?
Rachael Manion:Well, Prior Authorization, you know, on the ground, it really translates to the criteria that you have to meet in order to actually access the drug in order to have that drug covered. So I think patients have a really, really intimate understanding of what it is that they're already supposed to have done or tried or experienced in order to actually get their drug plan to cover something. So that is what we're talking about when we're talking about Prior Authorization. And so I think that, you know, that is not always a really clear, transparent or obvious set of steps for people. There's a lot of different analysis, and data and evidence that goes into creating that sort of list of conditions that have to be met for something to be covered. And for patients to figure out what those are is often really challenging. And once they figure out what those who are, working with their provider, their healthcare provider, of course, figuring out whether the drug plan thinks that they have met that actually can be a really long process. I remember speaking with one patient who, during the pandemic, experienced a flare, so they were treated with a Prior Authorization drug, so they'd already met criteria, they were taking their medication, and then their condition got worse. They experienced a flare. And so their provider wanted to put them on a different medication just to manage the flare, with the idea that they would then have another plan once this person was stabilized. And at the time when I spoke with that person, he had been waiting six weeks to hear from the private drug plan, whether that second drug to treat his flare that he was living through was was actually going to be covered. So that's a really clear example to me of the impact that a delay, that a long process and that a non transparent process can have on a patient when they are living through something that is particularly agonizing.
Denise Balch:Yeah, absolutely. I know healthcare practitioners do do their best to sort of help patients through this process, and there are patient support programs, but I can only imagine, if you're already doing with either a new diagnosis or a prolonged debilitating condition that affects your quality of life, and obviously your mental health as well, how much harder it is when you're sort of dragged through a bureaucratic claims process. There's a bunch of hoops to jump through. In terms of the CSPA, I think, when we're leading up to this discussion, I know that you certainly do your best to advocate on the public side, for patients. So how much interaction do you have with private payers?
Rachael Manion:We have very little interaction with private payers. As you mentioned, Denise, in the public payer system, there is a specific moment in that process where patient groups, and patients are invited to tell the decision makers about their experiences. So patients are asked about their experiences with the condition with the treatments that they're currently taking or that are currently available. They're invited to talk about the impact on their loved ones, on their ability to work, or go to school. And they're, of course asked about any experience they might have with the drug that the public plan is considering adding to their list of covered drugs. We don't have a similar process in Canada for private payers. So all of that analysis that creates that list of criteria that has to be met, so that a patient can have their drug covered, we have zero formal input into that. And I think that is one of the reasons why our engagement in the public process is even more important because, increasingly, private payers are looking at those analyses that public payers do, to figure out whether they're going to cover it too. So it would be really, really advantageous, I think, to private payers, to actually hear a little bit more from patients about what their experience is within the current treatment landscape, and what it is that they are looking to new drugs to be able to do. But that process is not really formalized here in Canada. And it's a bit of a shame, because, it's really that list of criteria that informs what's going to happen during this Prior Authorization process.
Denise Balch:Yeah, no, absolutely, I can certainly understand how valuable that input would be. And certainly for patient groups, you know, representing patients and speaking to patients, you know, on a daily basis, in significant numbers. So, we have to be really transparent here, you've been involved with the Simplify Prior Authorization initiative, that I manage, for almost a couple of years now. So obviously, we're working mostly, well really exclusively on that private payer submission process, and really advocating for a more streamlined process, preferably an electronic one. So maybe you can just share for our listeners why you decided to get involved and commit some of your valuable time to the initiative.
Rachael Manion:Thanks, Denise. Absolutely. As I mentioned, we don't actually have a lot of input into the private payer process. And with that, comes a level of opaqueness, we can't really understand that process very well, when we're not included in it. And when it's all sort of done in a private context, without a lot of transparency. So becoming involved with this initiative was important to CSPA because this was a really interesting opportunity to work with multiple stakeholders in this space to try and create a resource for patients that actually talks about what they need to know when they're talking to their private drug plan. What should they do if they get a notification that their request for coverage has been denied? For those of us who have more experience in this space, we often will consider that denial of a request for coverage as the beginning point of a conversation to make sure that the decision makers understand what's happening for that patient, and perhaps offer a bit more context as to why they may have met the criteria that they have to meet in order to get it covered. But when there's no transparency about this process, and when those processes themselves take so long, it's really challenging for us to help the people in our community. So this was a really great opportunity for us to rally some resources collectively to try and address this problem on a broader level.
Denise Balch:Yeah, no, fair enough. And I should say that the system is not totally broken, like there are people that do get timely access.
Rachael Manion:Oh, absolutely, yeah. I don't mean to imply otherwise, Denise, sorry.
Denise Balch:No, exactly. And I just want to make that clear, because I know that we do have insurers on these podcasts, and that listen to them, and I think, you know, it's a paper process, so it's tough, going back and forth when you're dealing with a paper or fax based process. And one of the things that we've talked about in the past, and we've spent quite a bit of time discussing, you know, what it would mean to patients, and really all stakeholders, payers included, to move to an electronic process where at least the submission to the payer was done electronically, and where the communication back and forth could be done electronically to really improve the time that it takes to go through this process for patients. So you've been around the initiative for quite a while, what are your thoughts on the prospect of moving to an electronic prior authorization process?
Rachael Manion:I think it's going to be really important for patients to have a sense of where they are or where the actual benefits provider is, in terms of their own process to make a decision on that. And then, of course, to be able to have that conversation if they need to, at the end, once a decision has been made. One of the things that is the biggest shame, I think, in our process in Canada, whether it's public or private, is all of the different administrative steps that have to be followed. And it's not that we have administrative steps, it's that each of them adds a little chunk of time. So if it's possible to reduce that time, we could have a huge impact on timely access to medications. We can make sure that people who need drugs, maybe because they're in the middle of a flare, for example, can get there faster. It isn't about changing the outcome of the decision necessarily. It's just about getting there faster.
Denise Balch:Yeah, and as you've pointed out, and the same is true for, particularly patients who have cancer, that timely access is really critical to their health outcomes. And that can have an impact in the workplace as well. So the other thing that we've been working on, which I know you've been very involved in, is the new and expanded, Simplify Prior Authorization website that's going to launch in the new year. It'll be launched in January. And we have a webinar on January 17. It's going to talk about that and some other issues around prior authorization. So maybe you can make comments about that website. I know you've been very involved in providing us with advice on, you know how that site can be valuable to patients. So maybe just mention that a little bit and sort of what your perspective is on the value that that site can can bring to patients. I mean, you've spoken to to it a little bit, but maybe you can expand on on the resource that we're going to be launching in the new year.
Rachael Manion:Thanks, Denise, this initiative was a really important opportunity for us to be able to build something that is useful across the board. Many patient organizations have really limited resources. And to be able to make a resource that is useful for multiple communities, I think is really important. The content that we've worked on, including in the website is a little bit of a 101 on how private drug plans work, specifically, this part, this Prior Authorization process, as more and more patients are coming into contact with it. And so I think that it was really important to us that the language used to describe very specific processes was really plain, it was really clear so that you didn't actually have to spend many years in this space like you and I, Denise, in order to understand what kind of process was having an impact on your life. So there's a lot of really interesting content for different stakeholders that intersect with the Prior Authorization process, and when it came to the information for patients and patient organizations, we wanted to make sure that it was as clear as possible, and that we had content in there that helped everybody have a really solid understanding of what Prior Authorization is, why it exists, and how to navigate it, so that we can all be more effective at getting to a solution that works best.
Denise Balch:Oh, that's great. Thanks very much. I think you've summarized that very well. So as we get to the end of our recording today, it I always like to look to the future. So you know, what, what do you what would you like to see? You know, say, if we're sitting down together at this time next year, what would you like to see happen in this space?
Rachael Manion:I would really like to see an environment where patients have a window into the decisions that are happening that are affecting their lives, and where their loved ones have access to this. This is a bigger issue in some communities than in others. Or if the patient themself is somebody who needs a little bit more support from their loved ones. But I think I think that some of the initial concerns around you know, access to your own private data and things like that, I think we've we've seen a lot of important changes happen throughout the pandemic we've been living through, I think there's more acknowledgement about the fact that we need a balance. Safeguarding people's private information has to be weighed against making their information available to them, and using that information in a way that actually serves the goal, right? The goal is to figure out whether a patient who qualifies for a drug under their benefits plan can get approved so they can they can get on with their lives and see if it works for them. So I think it will be really important for people to have access to information in a format that is useful to them, in a timely way, and for them to be able to know how to contact their group benefits plan, if they need more information, if they need to have that conversation about perhaps a negative response or some other kinds of information that they felt wasn't necessarily appreciated by by the decision makers at the time. So, maybe that's a tall order. Maybe that's small thinking. I'm not actually sure, Denise, but I think it's a really important step for us to be taking?
Denise Balch:Absolutely, and I think that if we can get some early adopters on the electronic Prior Authorization side of things, you know, I think most people that I speak to now agree that there should be an agnostic solution. So, one that all insurers and providers can have access to, to make the information flow much easier, and as you said, while obviously maintaining, you know, people's privacy and working within privacy guidelines, and legislation. But yeah, there's lots to do, and I'm really hoping that in 2023, it'll be where the rubber hits the road, and we'll make some very good inroads into deliverables.
Rachael Manion:Thanks, Denise. Me too.
Denise Balch:Well, I'd like to thank you very much for being with us today, Rachael. We're getting close to the end of the calendar year here too, and it's I know that it's been a long year for everybody. Your input into the Prior Authorization initiative has been much appreciated, and I've certainly learned a lot - not just today, but throughout the last couple of years working with you about the challenges patients face and also the opportunities available to them in the future. So thanks once again for joining us.
Rachael Manion:A pleasure. Thanks very much, Denise.