The Power of Patient Advocates and Professional Collaboration

 On this episode of TMU, we sit down with Ray Wezik, the Director of Policy and Advocacy for the American Urological Association (AUA), as we dive into the world of patient advocacy and lobbying. Ray shares his perspective as someone who works with over 75 patient advocacy organizations to leverage their voices and become better advocates together. We discuss the importance of collaboration between patient advocacy and medical professionals for effective efforts, and Ray shares insights on how networking events are bringing patients and urologists to state capitals to advocate for solutions and funding for research programs. Ray also shares valuable insights on working with regulatory agencies like CMS, and the value of determining CPT codes.

Transcript

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0:00:04.2 Myriad Genetics proudly presents The Modern Urologist Podcast. This casual, yet educational podcast, is committed to keeping you informed on all things urology, so you can continue to provide the highest level of care for your patients.

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0:00:23.1 Dr. Mark Edney: Hello, and welcome to The Modern Urology Podcast. My name is Dr. Mark Edney, and it's my honor to take over the hosting duties from Dr. Todd Cohen, who is a good friend who's moved on to other duties. A little background on myself, I am a Senior Physician with Chesapeake Urology Associates, which is a member of the United Urology Group. I practice in Salisbury, Maryland. I have quite a bit of experience in policy and advocacy in the business of urology. I've, in the past, held positions on the AUA's Legislative Affairs Committee, I was a past Gallagher scholar. I've held several terms on the AUA's Public Policy Council. I'm a past President of the American Association of Clinical Urologists. I'm currently chair of the AUA State Advocacy Committee. I am the editor of the Business of Urology section of the Urology Practice journal. And I'm... In fact, I'm chair-elect of the Public Policy Council. And just a little bit in terms of my background and what I bring to this podcast, I want to let the listeners know that it's my intent to continue to drive this podcast in a positive direction the way Dr. Cohen has and to really bring to you critical thought leaders in the House of Urology from a business and policy and advocacy perspective, the people who are on the ground every day doing the work for the practicing urologist.

0:01:42.0 DE: And I want to be asking the questions that you want answered. I want you to let me know if there are questions that you have that weren't answered. And please, let me know if there are future guests that you'd like to hear interviewed on this podcast. I really want this to be a service to the practicing urologists out there, we're doing this for you. I wanna provide you valuable information, and I don't wanna waste your time. And so that's what I'm about. I am very honored and grateful to our first guest of this new phase of the Modern Urologist, to welcome, Ray Wezik. Ray is the Director of Policy and Advocacy for the American Urological Association. Ray holds a Juris Doctorate Degree from Tulane University Law School and a Bachelor of Arts degree in Political Science and Criminal Justice from Roanoke College. Ray and I have worked together through our roles in the AUA over the last couple years, and I've found him to be incredibly insightful and very effective advocate for the House of Urology, for the AUA in general. And so I'm happy to welcome him. Ray, welcome to the program.

0:02:43.0 Ray Wezik: Thank you so much, Dr. Edney. I'm really honored to be here. I really appreciate it. And after listening to your introduction, I can't believe you have time to do this podcast.

0:02:49.0 DE: [laughter] I fit things into the cracks here and there, so happy to do it. And so, let me start out by asking you, certainly, far more specific and better than me introducing you and what you do, let me let you introduce yourself and describe your role at the AUA.

0:03:07.0 RW: Yeah, sure, absolutely. So, I kind of sit in a very interesting place within the AUA. I was brought on board 'cause of my experience with patient advocacy. I actually worked for a patient advocacy organization called the International Myeloma Foundation for about six years. I was the Director of Policy and Advocacy there, and we really were working to improve the lives of patients and find a cure for myeloma. But I also have a law degree and I'm actually a barred attorney in the state of Maryland, and so a lot of my experience also sits in the realm of lobbying. I did work for... Very briefly, for a lobbying firm and just have had a desire and interest around politics for quite some time. And so when the opportunity arose with the AUA to come on board... So, what I actually do is twofold. On one hand, I have the patient advocacy and research advocacy side of things, we have a manager there who helps me run that side of the house, we have three alliances, we have a prostate cancer impact alliance, a kidney cancer impact alliance, and a bladder health alliance.

0:04:00.7 RW: We also run a patient advocacy connections program that's sort of in conjunction with the Annual Urology Summit, and we missed you there this year but I know you had good reason not to be there. And what we're trying to do is we're trying to get the over 75 patient advocacy organizations that we work with involved in the activities and interests of the AUA and urologists and help where we can sort of dovetail those interests to leverage everybody's voices and actually become better advocates together. Because what we've always heard when we go up to the Hill or we go to state legislatures is, "Oh man, we've heard from these patient groups and you guys care about the same things. And you know what? Now, that we're hearing from both sides of the coin, we can see why this is so important. It makes a huge difference." The other thing I do, and what would probably be of interest for this podcast, centers around physician payment reimbursement. So RUC and CPT, I actually handle both of those teams that go up, talk with the AMA and have conversations about values and codes, how different procedures should be coded, how they should be described, edits to those CPT codes and then how to actually value them.

0:05:02.4 RW: Interestingly enough, this is sort of where the rubber meets the road with CMS because while the AMA both owns the CPT codes and they are actually copyrighted by the AMA, CMS can decide whether or not they want to accept those values at any time. And so it's a strange sort of dance where we do a lot of work meeting about three times a year for both RUC and CPT to develop a lot of this every day sort of utilization for billing. I think it's about 76% or 78% of codes are actually accepted for value at this point going down from what was in the... Like the 80 percentile previously. So that's pretty fascinating.

0:05:36.8 RW: We also handle, when the fee schedule comes out, sort of looking at the fee schedule, how that'll impact urology, kinda giving a quick drill down to everyone, everyone being our AUA members, so they understand how this might impact them and their practice, if they might make changes to their practice, what that might need to be. And then we provide comments to CMS within the 90-day comment period on our opinion about changes we would like to have. Sometimes, and this has happened in the last two years, we've actually met with CMS directly before the end of the comment period to have a bit of a conversation really about our viewpoint on specific things, and those would become increasingly valuable. And I've always really appreciate CMS in taking that time to talk to us and evaluating that feedback. It seems to be beneficial for them. So that's kind of it in a nutshell, if that makes any sense. Yeah.

0:06:24.3 DE: Yeah, no, that's fantastic. And that's really a broad scope of responsibility. I wanna tease a part, the CPT coding. And that's a statistic I've heard before, is that historically, a very large proportion of CPT valuations was accepted by CMS and that number is dropping. Do you have a sense of why over time that's dropping? I mean there are budgetary constraints and fiscal constraints which appear to be worsening at the federal level. That's certainly one thing that's obvious. Is there anything sort of from an insider perspective, behind the scenes, that you get a... Can glean that may also be contributing?

0:06:58.0 RW: I'm not 100% sure. Anything I would kinda come up here with would be totally conjecture, but I feel sometimes as if CMS is trying to feel out process... They're there at the table during RUC and CPT, so they are a part of that process on the floor. And sometimes they just tend to disagree and they feel like they have a better process for valuing a certain code or they might be looking at trying to keep costs low for the entire system 'cause as we know, budget neutrality is very difficult. When they made updates to the clinical labor inputs, when we look at that sort of large formula that sits across the board for RUC, it makes things difficult, really to kind of play well within the parameters that they're given to operate, and I do not envy them at all when it comes to trying to make that all work.

0:07:45.9 DE: Sure, absolutely. And as we advocate for CMS to accept these CPT codes and sort of advocate for ourselves, the AUA recognizes that they were a very large international organization but particularly in the United States, there are a couple other significant advocacy organizations in the House of Urology that it's important that we collaborate with. So, we've done a lot of work over the years and we've worked very well with LUGPA with whom we share a lot of very common advocacy goals, and the AACU for that matter, which is the nation's oldest, the most historic advocacy organization. So, can you speak for a little bit about the importance of collaboration within the House of Urology when we approach a CMS with these sorts of asks?

0:08:27.0 RW: Oh, it's incredibly important. So, we work, as you said, very closely with LUGPA and the AACU. As a former AACU President, you would know that. And we really want to make sure that whatever we are saying to CMS is with a unified voice because the worst thing that could happen is that a proposed rule comes out whether that's OPPS, IPPS, the fee schedule and we say... We all say something slightly different because then CMS starts to get mixed signals, they don't quite know who is right or who might be wrong. And that's really a disservice to everybody when it comes down to the House of Urology. So the House of Urology needs to stand united, we need to stand with one voice and make sure that whatever we are saying, that we're in agreement and that CMS only hears one message coming from all three of those organizations. And we've been really able to do that the last couple of years, really appreciated working with all of the staff over at AACU and LUGPA, they've been fantastic to work with. Before we actually do our fee schedule comments, for example, we actually sit down with them, we share our letters back and forth and just kinda pick out things like, "Oh, we missed this," or, "Are you guys gonna comment on that? That's okay, we're coming from this direction. Is that okay?" And everybody seems to work well with that system so far.

0:09:38.8 DE: Sure. One of the conversations we have when we get together for policy meetings amongst folks who are involved in legislative advocacy and policy, are the importance of the surveys, the RUC surveys. And again, for the listeners, the RUC stands for the Relative Value Update Committee which is a committee of the AMA that values CPT codes. And they value new CPT codes, but they also sometimes bring old codes back for reevaluation. And most of that valuation is dependent, very dependent on surveys that are done of the population of practicing urologists. And so you will get emails from the AUA, sometimes from the AACU, saying, "Hey, please participate in this survey, it may take you 15 or 20 minutes. And the ask is to be honest with your volume and be really honest with your time. The goal here is not to say you're the speediest guy in the world. You may be very efficient, but be realistic about what are the average time it takes you in terms of the work to do these things?"

0:10:36.9 DE: These surveys are incredibly important and they notoriously have very low return rates. Can you speak a little bit for the audience on the... Just to underscore the importance of not trashing those surveys because I think a lot of people... We're all busy and we're all stretched for time, and we got a lot of patients to see and we wanna get home and live our lives after we see our patients. And one more email from the AUA about a survey that you don't really recognize is very tempting just to hit delete. But we are shooting ourselves in the foot when we do that. If there's one email that I would urge you not to delete, it's the RUC survey. Please fill it out, please be honest because it can make or break the difference between a favorable valuation of a RUC code or a low response rate. The RUC Committee says, hey, you didn't... You guys didn't care enough to actually respond to this, we're gonna downgrade you. Is that accurate? And please talk to that.

0:11:28.0 RW: Yeah. So first off, you're my favorite person right now because you're bringing this up. This is so incredibly vital, and you've hit the nail on the head. We need to respond to these RUC surveys. Honestly, we need to respond with your average time, not your fastest time or your slowest time if you're doing a procedure. It really needs to be sort of the basic undertaking of the procedure. If we do not get enough responses, the survey will not count, we have to resurvey again. We actually send out... Depending on the utilization for that particular procedure, we can send anywhere between 1000-5000 requests for surveys and we're hoping to get between... Again, depending on the number of utilization, we're hoping to get anywhere between 30-60 responses. And we, oftentimes or in the past, would struggle to do that. I think we've done a lot of work to educate everyone, and this podcast included, about the value of participating in those surveys. And our survey responses in the last several surveys that we've conducted have been great. And it makes it so much easier for our RUC team to go up in front of the editorial panel and sort of present our case when we can show that the data is there to back up what we're asking for.

0:12:42.5 DE: So, that's fantastic. I wanna move on to sort of another point we touched on earlier which respect to you've done a lot of work with patient advocacy groups, and I think this is one of the best advents sort of... In advocacy, I've been doing advocacy in urology at the national level for a long time. And when I started, patient groups were out there but there was no collaboration, there was really no cross talk. And it's so important that we start working together. And I think the AUA has made huge gains. They're a very prominent presence now with the AUA and at the Advocacy Summit. We've got patients groups there, we've got people at the table, and we're starting to really have conversations together, they've got podium time in our meetings. And I think it's incredibly critical because one of the things I advised advocates, whether you're going to your state house to talk to a representative or if you're going to Capitol Hill to talk to a representative or a member of the Senate, patient stories, which, again, from their perspective, from these lawmakers' perspectives, are constituent stories, and it's important that you understand that distinction.

0:13:41.7 DE: There are patients... We care very deeply about the care of our patients. These politicians care about really two things, politicians care about votes and they care about money. And so leave the money thing aside. In terms of votes, they wanna do constituent service, and they want their constituents to like them. And so when they hear constituent stories, you pique their attention. So we can talk all day long about data and about how costs are way outstripping reimbursements and all of this sort of vague general things about how the house of medicine is struggling. But when we have a specific ask and we have a patient story to go with it... A patient, your constituent, was in my office, and this happened to them because of whatever policy failure or whatever legislative failure, that resonates with them. And we need to start speaking more in those terms when we're in our state capitols and when we're on Capitol Hill. And it's the patient advocacy groups that are really gonna help us to develop those things and develop that messaging. One of my asks of the listeners today is that a lot of you will be actively involved in advocacy and start collecting those patient stories and bring them with you to the state capitol, bring them with you to Capitol Hill.

0:14:54.0 DE: But if you're a listener who hasn't been really actively involved in advocacy but you're generally interested in this stuff, you may have a patient in front of you say, "Hey, this is a perfect example of this policy failure." Write down the basics and email it to me or to any one of us who are involved in state or federal advocacy because what we need to do, really proactively, start collecting these patient stories with the help of our patient advocate partners because it's an incredibly powerful form of advocacy. And we're coming to understand that, and I think we're starting to do better with that. That's one of the messages I wanna leave with the listeners today, is that when you have a patient exam in your office of a failure, maybe it's a prior authorization, delay in care that led to some harm, those are great stories to write down and either use them yourself or if you don't make it to your state capitol or to Capitol Hill, email them to one of us. And again, I'll provide my contact information at the end. Email them to us so we can use those stories 'cause they're incredibly powerful. So, if you could just talk a little bit more, Ray, about the evolution over time of the addition of the patient voice to what we do on a national level and how important that is.

0:16:03.4 RW: Yeah, absolutely. So the patient voice really is there to stand alongside the voice of the urologist. And I think I alluded to this at the very beginning when I kind of did the introduction, but the patients care about the same things our AUA members care about, our AACU members care about, LUGPA members care about. They want access to those treatments that are out there, they don't want to pay an arm and a leg for them, they wanna be able to afford them, and they want to find cures for things that they've been diagnosed with, and so do our docs. And so we really recognize where we have those similarities, where we have those areas of agreement and we try to figure out the ways that we can best work together. And so far, we've done, I think, a really good job bringing patients in, having them speak to AUA members, having them go into meetings with AUA members, just having the discussion with doctors and patients at a more relaxed level, not in the office or in the clinic, but rather...

0:17:00.9 RW: For example, we had a Patient Advocacy Connections Program right before the summit. We actually had a networking event that Sunday night after all the committee meetings were done. I budgeted for 40 people to show up, 150 showed up instead. And it was great because we had a bunch of patients there, we had about 20 groups, and then we had a good number of urologists there. And it was relaxed setting where they talked about things they cared about, they talked about advocacy initiatives, they talked about what's happening, prostate cancer, kidney cancer, bladder cancer, anywhere between research appropriation funding to things like copay accumulator programs, prior authorization issues, the gambit. And what will end up happening or what we're really driving towards, and we're trying to do this very strategically, is bringing patients with urologists to the Hill, to state capitols and sitting them in front of their own actual representatives to do exactly what you're talking about.

0:17:50.7 RW: This is... We're both constituents. We both care about this. I'm the doctor who treats patients like this. This is what I see from my practice, these are the troubles I'm running into in my practice. Now, hear from this patient who is very similar to somebody I might treat, if not my patient. Here's their concerns. This is the same problem they're having, they're just seeing it from a different perspective, how can you help us? This is a solution we have for you as well, here's a bill that we want you to cosponsor, here's something we want you to do, here's funding we want you to appropriate to a specific research program. And we're seeing that starting to happen, and I think we're just gonna see that increase as time moves forward because we're seeing so many areas where patients wanna engage and so many areas where doctors wanna engage with those patients.

0:18:31.0 DE: Fantastic. Yeah, it's an incredibly important advent in evolution in our advocacy and incredibly powerful, and I look forward to sort of pushing that envelope further as time goes on. Again, I'm talking with Director of Policy and Advocacy for the AUA, Ray Wezik. Ray, as we wind down here, I wanna switch gears just a little bit and talk to sort of another area of your expertise, the interactions with CMS. And the nuances of dealing with regulatory agencies are a little bit different than dealing with Congress. There are just some constraints, confinements that we deal with. And one of the issues that came up, this is probably, I don't know, eight months or a year ago that I emailed you was the whole notion of the inpatient only list for certain procedures. And it's something that's kind of waxed back and forth over the last couple of presidential administrations, the list is actually flopped around a little bit.

0:19:25.0 DE: One of the interests for some integrated practice is starting to explore the notion of something like robotic prostatectomy in an ASC setting, for example. And the barrier we've run into is that robotic prostatectomy is currently back on the inpatient only list. And so the question is, how do we sort of work together and ask CMS to sort of reconsider this? We had this conversation, and I think you had had some conversation with CMS and CMS kinda came back with their reasoning. But I think it was a very insightful, informative case example of the challenges of working with CMS versus Congress. If you could sort of rehash sort of our ask of CMS and what sort of they came back with and what they suggested for us, I think it would be informative for the viewers.

0:20:13.8 RW: Sure, and there's actually many examples of this. So with the inpatient only list and really in dealing with CMS in general, you really have to recognize, again, that they are bound by certain constraints, they are given power by Congress to act within their authority as a regulatory agency. And so they have to reexamine that authority often when they look at things like making additions to the inpatient only list or moving certain procedures over there and deciding whether or not they're going to reimburse for whatever we're asking them for. When you talk to CMS, some people kind of wanna yell and scream and say, "Why aren't you doing the thing we want you to do?" And I always find that to never really work very well because you're automatically putting normal people, they're folks just like you and I, into a position where they're defensive and they're being kind of asked to do something that may or may not make sense but now they're sort of not listening to you anymore. So we've always taken the approach in the AUA of being a little bit more kind and understanding when it comes to CMS but also firm where we need to be. And we also recognize that if CMS feels that their regulatory authority only goes so far, well, the people who gave them that regulatory authority is who you should go speak to next.

0:21:29.9 RW: So the thing I kinda think about is, and I think we emailed about this as well, with the Inflation Reduction Act which passed... I'm sorry, the Infrastructure and Investment and Jobs Act which passed in November of 2021, included a provision for wasted units that essentially told CMS that they needed to get reimbursed by manufacturers if a percentage of the product that was being utilized by medicine in general, a certain amount of it was being wasted.

0:22:00.5 RW: And I believe it was something like 10%. And that we were a little concerned about this because we weren't sure where this might fall within the realm of urology, and it turned out that Jill Maido basically became the poster child for this issue because CMS when they created the fee schedule, which is how they were taking that legislation, that directive they got from Congress and turning it into a regulatory initiative is they put Jill Maido as the example and said, "Here's a kidney cancer or upper urinary tract treatment using glass vials, and a percentage of the treatment is actually sticking to the vial and therefore, this would classify as a wasted unit and therefore, the manufacturer would have to reimburse."

0:22:45.8 RW: Well, we had talked to the manufacturer. They acknowledged that if they had to reimburse for every one of these treatments that they essentially would go under, and that this would no longer be viable business for them to continue to conduct, which then turns into an access issue for patients. So we actually had a conversation with CMS, we had a conversation with the manufacturer and we were happy to see that in the fee schedule, CMS recognized that this would be a problem for this particular treatment. They used that as the example to say, we're gonna give an exception to the legislation and to the regulation that we were forming in order to allow this treatment to still be administered without essentially putting this company out of business. And they allowed up to 20% wastage, recognizing though, just the manufacturing process alone leads to that 20% naturally. There's no way, unless you sit there for 20 minutes or so and hold the vial upside down and let it slow drip, and I'm making that up, I don't know if that would actually work, to get that last little bit out of the jar essentially.

0:23:41.0 RW: And that sort of solved our problem. But that's a really great example of CMS getting handed down orders from Congress, having to implement them, recognizing that even what they were going to implement may not work, having the regulatory authority and discretion to make changes within their bounds to what was handed to them and then finding a solution moving forward. Now, the inpatient codes, we haven't gotten to that solution yet, but it might be an instance where we need to go to Congress and have a conversation and say, hey, we're hitting a road block.

0:24:12.5 RW: This isn't exactly what we were looking for. Is there something we can do here? Is there conversations that the members of Congress who are on the oversight committee for CMS or HHS could have conversations with? There's other instances of that as well with the Inflation Reduction Act. You continue to see legislation directing regulation developing into regulation that we comment on and having to come back around. And so there's a lot of back and forth between Congress and agencies.

0:24:37.0 DE: Fantastic. That's great, that's really insightful and I think really gives the audience some inside baseball on what happens really out of visibility for most of our day-to-day practices, which is a tremendous amount work that the AUA does, interacting with CMS and with our federal advocacy. Our federal advocates, we get together at the AUA Summit every year and we visit offices. But day-to-day, we've got an entire staff that it's their day-to-day job to actually interact with members of Congress and interact with the agencies and Ray is at the forefront of that. And so it's a little bit of... Just sort of inside view of what happens on a day-to-day basis and how much benefit folks like Ray provide to practicing urologists, to the House of Urology. And so Ray, I really appreciate your time today. I think that'll conclude our conversation, I think it was a great, wide-ranging conversation with a lot of great information. I really appreciate you taking the time to join us.

0:25:31.3 RW: Really honored to be your first guest and wish you the best of luck on rest of your podcast.

0:25:35.4 DE: I appreciate it. Alright, we'll conclude. Thanks again for joining us for The Modern Urologist. I look forward to seeing you next time.

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0:25:44.8 This podcast is brought to you by Myriad Genetics. If you'd like to learn more about our genetic testing solutions to personalize prostate cancer treatment, visit myriad.com. If you like what you're hearing, make sure to share, subscribe or leave us a review. Until next time.