CODED: Genetics
CODED is a podcast brought to you by Genetic Support Foundation and hosted by Katie Stoll, MS, CGC and Dr. Stephanie Meredith. We explore the most pressing issues at the intersection of genetics, healthcare policy, and bioethics. CODED will be of interest to healthcare professionals, policy makers, and anyone interested in understanding how advances in genetic medicine are reshaping healthcare delivery and society at large.
CODED: Genetics
Genetic Counseling Reimbursement: Challenges and Solutions for Patient Access
Think billing for genetic counseling services is just about paperwork and numbers? Think again. In this eye-opening episode, we pull back the curtain on one of the most critical yet overlooked challenges facing genetic counselors today—getting fairly paid for their expertise.
Joined by billing expert Brian Reyes, MS, CGC from UT Southwestern Medical Center (speaking in his personal capacity), we dive into the perfect storm of obstacles preventing genetic counselors from being properly recognized and reimbursed. From outdated Medicare policies to missing dropdown menus in insurance systems, these seemingly small administrative issues create massive barriers to patient care. Brian shares his journey from billing-avoidant genetic counselor to passionate advocate, offering a masterclass in navigating these complex systems.
The conversation reveals a surprising truth: when genetic counselors can reach insurance decision-makers, they often find allies who understand the value genetic counselors bring to appropriate testing and patient care. The real challenge? Getting past gatekeepers to have these crucial conversations. We explore the new CPT code 96041 that finally recognizes the substantial behind-the-scenes work genetic counselors perform, and why this matters for sustainable practice.
Most powerfully, we reframe billing not as a tedious administrative task but as a fundamental equity issue. When genetic counseling centers don't bill for their services—whether through grant funding or giving up on reimbursement—they may inadvertently perpetuate a system where vulnerable populations lose access to critical genetic services. As Brian passionately argues, "Are we leaving money on the table that should rightly belong to the healthcare system for providing that service?"
Ready to advocate for change? Listen now to understand how the Access to Genetic Counseling Services Act could transform genetic counseling accessibility nationwide, and what steps you can take today to improve recognition and reimbursement in your practice.
Genetic Support Foundation: https://geneticsupportfoundation.org/
Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/
Greetings and welcome to the Coded Podcast. I'm Katie Stoll, Executive Director at Genetic Support Foundation.
Speaker 3:And I'm Dr Stephanie Meredith, the Development Director at GSF and the Supervisor of our Lettercase National Center for Prenatal and Postnatal Resources. All right, so we're going to start off with some highlights going on at GSF and related news. We published a couple of blog series on pronatalism and disability pride in the past couple of months and you can check those out at bloggeneticsupportfoundationorg and pronatalism has actually become a big issue in the popular media over the past month or so. But know that we got the first scoop in June, before that even happened, so that's really exciting followed by some other people who'd also given us great information.
Speaker 3:We also have the National Society of Genetic Counselors annual meeting coming up November 6 to the 10th in Seattle, washington. Most of the GSF staff will be there for you to connect with us and we'll have a booth with all of our educational materials and our letter case resources. We'll also be hosting GC's Got Talent event on November 8th and we would love for you to check out that event on our website under the events subheader and come join us for the fun. It's really a great night of sharing our talents among genetic counselors. We have a silent auction to benefit all the good work we do. We'll have light appetizers and drinks and inspirational messages from our team and friends and ultimately, this is an event by GCs and for GCs and, quite frankly, the most fun and uplifting thing you could attend that evening. So don't miss it.
Speaker 1:So today we're gonna be talking about a topic that might sound a little less fun. We're going to be talking about billing and reimbursement for genetic counseling. While this might not be the most lively topic, I'll say it's a pretty important one for us at Genetic Support Foundation and I really think in the genetic counseling community in general, it's something that deserves some attention. I also know that it's a great concern for a lot of our partners and our patients, who often struggle with issues around reimbursement for the genetic counseling services we provide. Central to our mission at Genetic Support Foundation is to make genetic counseling accessible as an independent service, and by that I mean it's not tied to any other financial interest. That genetic counseling services as a standalone service is something that is accessible to people who need it, and doing that, we really need to see fair reimbursement for these services, and there's been some real progress in this area, but also some challenges and, I think, things that we can do at GSF and hopefully our partners in our community can help us in advocating for as well. I'm really excited to introduce our guest for the podcast today.
Speaker 1:Today we have Brian Reyes here with us. Brian is a genetic counselor who shares GSF's passion about increasing access to genetic counseling. He's also been a real leader in the field of genetic counseling around advocacy for billing and reimbursement. Brian currently works as a genetic counselor manager at the University of Texas Southwestern Medical Center's Cancer Genetic Program. In addition to this, he has been a CPT coding advisor to the National Society of Genetic Counselors and recently, just out of the blue, brian reached out to me after hearing through the grapevine that we were having some challenges at GSF around reimbursement and he's just been, you know, really so, so gracious and sharing his expertise and really instrumental in helping us move some things forward with some of the payers that we've been struggling with around reimbursement. So we're so thankful to have Brian here with us on the podcast today.
Speaker 2:Well y'all, thank you for having me.
Speaker 1:Brian, this is. This is a little bit of a niche thing for a genetic counselor to get focused in on, and I'd love if you'd share a little bit about your history and your passion for this area around billing and reimbursement for genetic counseling.
Speaker 2:Yeah, I'm so happy to. So I know we talked. I am here on my own today giving my own perspective that doesn't represent my employers or any of the groups that I work with, but my own passion came, I think, from a very similar vein that I think I share with a lot of people, which is a deep dislike of talking about billing and having to interface with it when it comes to healthcare. I was working as a supervisor for the Cancer Gen X team at UT Southwestern in 2019, when the administration reached out to us and was like hey, y'all haven't been billing and it's time to have a conversation about it. And when you go so long and you're supported and you never have to have these conversations, I was mortified at this idea that we would have to turn patients away or tell people that there would be a cost for service, and I threw myself into this conversation of what is billing going to look like, what are the practical costs going to be to our patients and especially as a leader to a team that was going to have these conversations on the daily.
Speaker 2:I wanted to do this really ethically but thoughtfully when we rolled it out and we were fortunate to have really incredible administrative support at the time.
Speaker 2:We got to spend almost a year preparing to bill before we started, so it wasn't something that we had to kind of do within two months type of thing, but at the same time, it really took a lot of time to both realize, okay, there's a price point set to this.
Speaker 2:What does it look like to calculate someone's deductible copay, Know if it's even going to be covered in the first place, and then relay that information to a patient at the time of scheduling when all they really want to know is like, how quickly can you get me in for this thing that my care provider has told me is important to me or potentially important to my cancer care? And so I became really passionate about it at that time, as you can probably tell, and it really grew from there I joined the Access and Service Delivery Committee with NSGC. I got involved in our CPT coding efforts and really learned way more than I ever wanted to know about CPT coding. And now we're here today with a new CBT code for genetic counseling that launched this year and lots of conversations about billing.
Speaker 1:So you were really instrumental in, I think, leading this update to the CBT code change for genetic counselors. Could you share a little bit just about what's happened? This is a big change just in 2025. And I know a lot of work behind the scenes for a long time before that.
Speaker 2:Yes, so I didn't lead it to begin with. I was a co-chair for the Access and Service Delivery Committee when the NSGC leadership was approached with the idea to update the code and at that time they had reached out to Access and Service Delivery. They knew we had experts that worked in billing and they said, hey, do you have anyone that is willing to take this on? It's going to be a lot of effort and in 2023, we had no idea how much effort it would be, how many months and inevitably years of our lives would be spent in that process.
Speaker 2:But we knew that there were some problems with the prior code 96040. We knew that it specifically limited the time that chant counselors could count toward their billing service to only face-to-face time, whether or not that be over the phone or video or in person. It had to be direct patient time. They couldn't count any time prepping to see the person that they were going to serve or really spend in a lot of documentation that genetic counselors are known for doing in the medical community, including writing letters, and so we knew that it was time to update the code. We also knew that there was an opportunity to really adjust some of the language to remove that face-to-face component so that there was less confusion about its eligibility with telehealth codes. Were there, a code could be used for telehealth. But that's not necessarily as obvious downstream to the billers who are looking at the code, seeing that face-to-face language, and saying, does telehealth apply? And we're really happy to see that the AMA has since kind of updated their language across the board away from that traditional face-to-face usage.
Speaker 3:And I'd like to jump in a little bit as one of the non-genetic counselors in this meeting and just kind of figure out what's an example of some of the prep work that genetic counselors do before an appointment, Because I think a lot of patients don't see that end of it and it's really helpful to have a better idea of what's done.
Speaker 2:I can definitely speak to my own clinic's experience.
Speaker 2:I can definitely speak to my own clinic's experience.
Speaker 2:When we meet with a patient, most of us will have spent at least five to 10 minutes going through that patient's medical record to review things like about, because then we want to start the conversation to align what we've learned about the patient with what their actual lived experience is coming into that appointment.
Speaker 2:Is the reason that their clinician referred them matching what they hope to get out of their encounter, and how can I make sure, as a gen counselor, that we address both those needs, both what the clinician who referred wants from the visit, but also what the patient is bringing in their own experience? I would also say that that prep work looks really different depending on the specialty of the genetic counselor. In PEDS, especially in rare disease, where you may be helping someone who's gone through a diagnostic odyssey and has had hundreds of genetic tests, maybe not genetic tests, hundreds of tests and multiple genetic tests there's a significant burden of time that comes in reviewing those thoughtfully, looking at the results of those tests, checking to see if those results match what we would currently interpret those results as, and being really prepared to take care of a patient the way they deserve. Katie, I know you are also in practice.
Speaker 1:Oh yeah, no, I would echo that I see patients in both the cancer setting but also in prenatal preconception and we have people on our team that see patients in the pediatric and rare disease space and other indications as well. And it is often the case that you might spend hours outside of that face-to-face time obtaining records, reviewing records, you know, preparing for the visit so we really can make the most of that time with the patient, but also in follow-up, documenting information so that it can go back to the referring provider in a, you know, coherent way, and providing resources to the patient and their family, jumping through any of the hoops necessary for what the work we need to do to get pre-authorization for genetic testing that may be recommended after the visit. So I mean, it's not uncommon that the time we spend, you know, really focused on one patient might be a majority of the time outside of that face-to-face encounter. So it's really important change that's happened with the CPT code to allow for accounting that time.
Speaker 1:I think there's some challenges that we've seen with just it's hard sometimes hard to predict that time right. So it's hard for patients, for us to prepare patients ahead of time how much time there might be involved in that case, without just kind of laying things everything out like this is what we're going to do, this is what that prep and follow-up and care coordination might involve, and I think it's also hard for, I think, people to recognize that there is can be substantial time without really understanding what all of the pieces of our preparation and follow-up are. So that's a great question, stephanie, to kind of consider that, because I do think oftentimes it's hard to recognize how involved some of that preparation and follow-up can be.
Speaker 3:Yeah, it sounds like a real, like you really have to put the puzzle together in some cases where it's a complicated condition, so that you can give people all make sure you're considering all of the variables and also then giving them the resources that they might need, as well as the guidance on the genetic condition itself. So thanks for the insight.
Speaker 1:Thanks also for the introduction. I think, brian, about your experience and what motivated this for you, and I know that there are many institutions that don't bill for genetic counseling services at all because it's so complicated and sometimes the return on investment isn't great, so it's just a service that's often offered at no cost. I know, as we've been considering this both under our GSF direct services but also with the partners that we work with, I think, from a billing compliance standpoint, my understanding and correct me if yours is different but you really need to have a standard process in how you're handling this. In other words, you can't say we're gonna bill patients who have this type of insurance one way and people who don't have insurance this way. I mean you have to have a standard in terms of how you're billing and transparency around that process. So I think that's one of the big barriers that centers that aren't billing for services have is that they know that maybe they do see reimbursements from some payers but, for instance, you know Medicare doesn't recognize genetic counselors, so we're not able to bill Medicare for our services, or some payers don't bill at all. So I'll share a little bit about how we've navigated that and I'd love to hear about your experience as well or other experiences you've heard from other centers. But it's quite labor intensive too, just these conversations we have prior to scheduling a patient around what to expect from billing.
Speaker 1:We talk about the possibility of billing insurance or billing patients directly. If patients are paying directly for services and we're not going through insurance, there is a prompt pay or cash pay discount that patient that's paying directly would have for the service. We also have financial assistance which is really funded by donors and grant support. So I think not all centers would have that opportunity, but we do provide financial assistance to patients who qualify, and those qualifications are the same Every patient, regardless of what their insurance is or not. You know there's certain standard criteria for that.
Speaker 1:We've seen, unfortunately, that sometimes, even with some payers, if patients call in advance, we might find out that they don't pre-authorize genetic counseling. In other words, they're not going to give any kind of assurance ahead of time that the service is covered. But they'll say, yes, this is a covered benefit. They'll work through all the different codes that we give them the CPT code for genetic counseling, 96041, the diagnosis codes that they're being referred for and they'll be told that it is a covered service but then ultimately claims are rejected. And that can be even a bigger challenge now with the new code, because where we might have only been billing for one 96040 unit of that face-to-face time, now we might be billing three 96041 codes so that you know the actual cost of the patient.
Speaker 1:If the insurance doesn't cover the visit can be substantially more. You know, we've really tried to do a lot of upfront education and provide patients information that as much as we're advocating for insurance reimbursement, unfortunately that's not always the case. These are the different pathways for coverage and hopefully people are able to make an informed choice about how to proceed with that. Are you able to share, maybe not from your institution but just in general other perspectives you've heard through this work about how other centers are handling this?
Speaker 2:Yeah, I'm also happy to share from our institution or our experience what I see. I think that there's a few things. One, I have lots of ideas as to how we continue to improve this process, how I advocate and encourage others to advocate. But to just start with what we're seeing right now, it's important to remember that the CBD change really was never meant to address existing billing barriers. There's nothing about the CBT code that would help billing as it stood.
Speaker 2:It was meant to capture the fact that genetic counselors were not reporting time, that they were in fact spending in service to their patient and that every provider who is performing work deserves to be recognized for that work, and that, really, cpt codes are about recognition of work being done. They're not necessarily about specific payments, and the AMA does a great job of trying to kind of separate that out. Even the process itself is two steps First you describe the code, then the code gets valued, and we knew prior to updating the code that there were still a lot of existing issues with payers, the number one issue not being that they didn't recognize 96040, but being that they didn't recognize genetic counselors as a provider type. This is a pervasive billing issue that I have witnessed nationally. We have this code listed, we know what 96040 is. Our patient calls up, they ask is 96040 covered by my plan? Yes, and then we bill it and it's denied because the provider type is a Gen Ed counselor. This is obviously a fundamental issue, right, because we have payers saying that they're covering something that only is billable by Gen Ed counselors. That's one of the most fundamentally important things to remember about this code is that Gen Ed counselor is the only approved provider type for it, but then not recognizing gen counselors in their plan. And why does this happen? It happens because when payers enroll providers, they need to have a we all know it right. There's a dropdown in the software we're using. It says physician, it says APP, it says nurse and there's no other listing. There's no listing for gen counselors when it comes to enrolling them to act as a provider type.
Speaker 2:And this is something that we've seen as a widespread issue amongst payers and there's probably some foundational reasons. We have been working continuously over time to get state licensure for many gent counselors, but still many states don't have it. We know that not having Medicare recognition is a foundational barrier, that this is also perpetuating. And then there's also that a lot of Gen Counselors aren't billing and that a lot of institutions that have a lot of power in this space are not billing. So what really frustrates me, katie, on y'all's behalf, is when we see some really large organizations with so much clout and influence in this space and then I hear that they're billing all their gen counseling services on a grant or that they just don't charge for them because they have the institutional funds not to, and then, as a field, we talk about all this equity work and things we want to do for patients. Then, as a field, we talk about all this equity work and things we want to do for patients, not recognizing that in not billing, what we're doing is creating the system by which there's workarounds, where payers don't have to recognize genetic counselors, where we're not forcing the conversation. So I have lots of ideas on how we address this, but I want to just start off by validating that, yes, billing issues are real for Genetic Counseling. They were real before the 96041 code was rolled out. They're going to be real after it. Where do I see 96041 fitting into that?
Speaker 2:Well, two things. One, it is probably causing some renewed payer issues. Specifically, we need to talk about bundled on this podcast together so that people are aware of kind of what that means and why it's being a problem. And then the second is it caused payers to re-look at things that we just weren't expecting. It's a rollover code. It replaced the prior code and yet some of them y'all, katie, have told me this have now seen things like it was covered for telehealth before and now it's not, and that makes no sense to those of us that worked on this project because it was a replacement code. Its status on Medicare never changed. 96040 was never listed on Medicare's telehealth schedule, 96041 is not, so we weren't expecting some of that to be an issue.
Speaker 2:And so there's a lot of education that is going to need to happen for payers in this space, and that's what a lot of education that is going to need to happen for payers in this space, and that's what a lot of what I've been working on. But I know it's particularly frustrating, especially because payers can be very opaque in how these decisions are made. Who has the power to change these things and how do you get a hold of that person? If I have anything to say to payers who might be listening, we need better access to communicate when there's frustrations that are systemic, not just a single patient, a single claim that needs to be righted. Payers can often make that happen. We need to be able to fix the foundational issues. When there's a policy problem, when there's a reimbursement problem, I think I can.
Speaker 3:I interject with a couple of questions. Yeah, so I want to make sure I'm understanding correctly. So, basically, if they, if an entity wasn't covering genetic counseling before, it doesn't change whether they're covering it now. It's just that this particular code expanded the kind of the hours that genetic counselors could be covered for their time for preparation, right, am I understanding that correctly?
Speaker 2:That's exactly right.
Speaker 3:And I think then my other question though and this comes from being a public health systems person Is it also possible that in some of the cases with these payors, that in some ways the system is working the way that it was designed in causing that confusion? Because I think sometimes that confusion can lead to nobody ending up having to pay anything, and you know, the burden of responsibility does fall on the providers and the patients, and so that's more of my kind of systems question.
Speaker 2:And I was quickly, very pleasantly surprised. When you talk to the people that are actually making these decisions, when you talk to the people where the clarity kind of hits of like, oh, this is the problem. I personally and I can't speak to other people's experiences have had a really positive experience with the payers in saying, oh, this was a mistake. We actually would like to cover genetic counselors, and I can't speak to the details of this particular conversation, but I was honored to be part of a call where we had a conversation with national group of payers and the medical directors that made policy really got it. They're like genetic counselors help patients get appropriate genetic testing. Appropriate genetic testing is a much bigger payment issue for payers than covering genetic counselors. They really saw it. They were like, okay, tell us how we can make sure genetic counselors get covered. And then we were able to have that conversation.
Speaker 2:But I think you're exactly right, stephanie, in that there is this public health challenge of education. And then we were able to have that conversation. But I think you're exactly right, stephanie, in that there is this public health challenge of education how do we reach those people that make the decisions? And then also this perception of well, payers just don't want to cover something. Therefore, they're putting up these barriers in the first place, and that may be true, right. It may be that the reasons we're having a hard time reaching people is because there is some of that, but I've personally had a very positive experience when I've been able to reach the decision makers and people invested in this. It's the barrier of getting to them that has been a particular challenge.
Speaker 3:That's huge and I feel like that has become a bigger and bigger issue that, like reaching decision makers is, feels almost impossible angles that are helpful in, you know, moving toward things like the Access to Genetic Counseling Services Act, because if you can demonstrate that it's for not only yes, the better health of patients, but also for payers, it's going to mean that you have more accurate, targeted, precise genetic testing and genetic interventions. That that's beneficial too, and sometimes that appeals to different people that you need to have be on your side. So, thank you.
Speaker 2:Yeah, it's also a numbers game For the pessimists out there. It is a straight up genetic counselors are a 10th or less of the average genetic test and so if you can even reduce one in ten inappropriately ordered genetic tests, genetic counseling immediately meets its benefits. And we have to remember that there's so many benefits to genetic counseling besides tests. It's the reduce and repeat tests for the exact same thing, because genetic counselors actually look through the literature or look through the medical record and find a test that someone's done. It is the appropriate interpretation of testing so that people aren't receiving inappropriate services or bad advice from the genetic results that are given. I think we're really fortunate, in all the work that the genetic counseling community has been doing in the public health space, to really now have data that suggests genetic counselors make the genetic experience for patients better and that when you reduce the human involvement, and specifically the genetic counseling involvement in the genetic testing process, outcomes are worse. So I think payers hear that. But to get us back on track with some of the challenges, katie, what I see, and especially for Genk Support Foundation, is that y'all are dealing with many payers right Things that seem like they have the same name but are actually different companies. One of my. I feel like it's a soapbox, but like there's a common insurance company that has a color in its name and it has this nationwide label. But that is exactly what it is. It's a label, but it's a franchised, almost in design type company and I'm not sure that that's how they'd endorse it. But to me, as a lay person who doesn't understand business structure, it is actually a multi-business platform where each of the different labels underneath its brand produce their own policies. And that can be particularly frustrating to someone when they say, well, but why is this one plan covering but this other plan not covering? Or why are we seeing this pervasive genetic counselor recognition issue? It's because there isn't just one system operating that we need to fix the dropdown, to add GenetCounselor, for there are over a thousand by most recent count of the number of individual health insurers in the United States.
Speaker 2:So I'm going to double down back on large practices pushing back, because y'all ask me who has the power to reach through to the people that can make decisions, and I've heard Jack Support Foundation kind of mentioned patients. But I also want to reiterate that large health systems have people that talk to these health plans all of the time. They're the people that contract, that make the negotiations with the health plans. They're the people that have one-on-one relationships with the people at the health plans, even though they don't work in the same company together. They know each other by name because they're the person that daily communicates on a large health systems behalf on the needs that are in dollar amounts much, much larger than what we're looking at in genetic counseling space.
Speaker 2:They're trying to negotiate contracts that look like NFL deals and are the types of things that you hear about on the radio for whether or not this particular health system is going to be in my network next year. Those are the people that can really help us very quickly move the needle, which isn't to say that patients and grassroots efforts are not worthwhile, because they absolutely are, but if you're looking for foundational system change in a rapid way, those are the people that I turn to to say, hey, who is your contact at this payer that can help us bring this issue to the table in a meaningful and rapid way, and that is how I've helped a few systems kind of address this more quickly when they need to is by turning to area partners that have a little bit of that clout.
Speaker 1:That's huge. That's huge, so we need anybody listening to this who's working with an institution that's not billing for services, or if they don't know what the success is. It could be really, really helpful to make those contacts and see what's going on.
Speaker 2:And Katie. It reminds me of what you said, though is that the larger the system, the more Jack Counselor may not feel the burden of having to worry about billing or to even be thinking about it. Maybe they are billing, but it's just not something it's taking care of for them, right, because they're in a large health system. And so genetic counselors that are really interested in equity in this space and addressing this, I would encourage them to have a conversation with their administration Know how is your services being funded, how are they being reimbursed, what does coverage look like and how can you be actively working to improve it?
Speaker 2:One of my favorite things is that, ever since we started billing, we have an every other month meeting with our billing team, and it's this amazing guy that runs spreadsheets that tells us what percentage coverage we're getting, and then an actual billing manager whose team processes the claims and sees the denials coming through, and we look at that report together as a leadership team and we say, okay, what are the denial codes coming in and are we seeing them in line with any particular insurer?
Speaker 2:And when we do, as a small group, we then reach out to our payer relations team, or we call it the managed care team, people that manage the conversations with really big payers, and we say, hey, connect us with someone or you take care of it yourself. Here's exactly what we want you to say Get this fixed for us and as a large health system, as a health system in Texas, that works for us because we have those contacts. But I also think that for groups like Genetic Support Foundation, if you don't have a group in your area doing that same thing, you may not see the benefit. And I think the pair mix is really different too. In Texas we have only about five pairs, whereas some areas in the United States, particularly the Northeast, it may be very common to have 100 payers in a particular state.
Speaker 3:I really love the way you framed billing, which you know we kind of introduced as maybe a dry thing. That really the heart of billing, though, is equity, because you're getting funding for the care that we know people need, so I think that's a really beautiful way to look at it.
Speaker 2:I think you won't meet a patient that isn't like oh no, my healthcare provider that I like doesn't deserve to get paid for their services.
Speaker 2:And unfortunately, I think, as people that live in the United States and deal with our own healthcare economy, we're pretty cognizant of the fact that it's an expensive system and that we expect to pay for things.
Speaker 2:But what we want from our healthcare team is to know that they're taking care of us so that whatever we don't have to pay for, whatever isn't intended to be our portion of the cost, isn't being unjustly shelved onto us. What Genetic Support Foundation is trying to push back against this unjust cost where payers are simply creating barriers? Maybe they don't know they exist because I really like to make sure that that space is held open that a lot of these are systemic issues where someone is just auto pressing an update on a computer, it's matching to CMS and CMS says no coverage and no covering for telehealth, and no human is taking a look at it and saying, oh, we're cutting costs and therefore we're not going to cover gen counseling for all these people on our plan. That really doesn't sound like most of the payers that I talk to, but it's still. It's enormously frustrating to then be advocating on your patient's behalf and have so many barriers to getting these conversations resolved.
Speaker 1:The drop down menu example you gave us, just perfect and, like you can understand, like there's probably there are these just like system problems that no one person is really responsible for, but create a lot of challenges for us downstream.
Speaker 1:One thing I wanted I have talked with peers that work in big institutions about how they're billing and I think that I get feedback that many are uncomfortable with opening up this can of worms because they don't necessarily want to bring scrutiny onto the fact that they're not getting reimbursed. Well, like you know, maybe maybe in a big system genetic counselors are kind of budget dust and nobody's really paying that much attention to it. But if you go in and start, you know, raising these questions, is that going to cause more issues? I've also heard from concerns that people are worried that maybe the way that their system is handling it isn't necessarily the way that they should be. Like. Are they billing genetic counselors services under a non-genetic counselor provider just to, or is it just, you know, facility fee that's paying for their services? So I think that I do think that like limits some of the willingness to open these questions up in some places, unfortunately.
Speaker 2:Katie, I love you for bringing up this question right now, because, oh my goodness, did I feel that way when we opened the billing can. I was was like, surely they don't know how much we cost and if we bring it up at all by billing, like they're just going to recognize what a deficit we are. And I need to like gently push back on all of us with this mentality and stephanie works in public health so she can help validate this they already know what a deficit we are. People that work in finance are detail-oriented. They pay attention to the bottom line. They know exactly how much they're paying each person on staff, they know exactly how much that person costs and they know exactly how little that department is bringing in.
Speaker 2:A phrase that I am a big fan of is are we leaving money left on the table? Are we just letting insurers not cover things for patients that should rightly belong to the healthcare system for providing that service? And the answer in many of those cases is yes. Now I think the opposing answer is like but wouldn't we be passing a lot of costs on to patients? And I think that I'm a very practical person. I think when you set up billing, you need to be very conscious about what that looks like. In our own practice, we made sure that the price, when adjusted for co-pays or deductibles, could look like a typical co-pay or co-insurance that someone might receive if they needed to pay cash. There are practical ways to start billing without destroying the financial ability of your patients to access it and, katie, I love that your group has access to a financial assistance scale, because a lot of people don't think that they're allowed to do that or that they could put their own together. But generally speaking, those can really add flexibility to your ability to, for example, see Medicare patients or be able to offer services in a more flexible way.
Speaker 2:So what I would say to genetic counselors who feel like their administration doesn't realize that they're a net negative or that it would be more pain, is that all you are doing is holding the conversation off for the future, because they do know that You're not bringing it up. No one's talking about it, but they're aware and in the meantime you are not bringing anything in that they care about Absolutely. They want patients to be well taken care of, but they also especially if they work in finance want to know that they are reasonably recouping costs for your services and what that looks like doesn't have to be a punch in the face. You don't have to immediately say we're not making any money. Now let's look at it together in a meeting and talk about cutting genetic counselors. But what you do need to be aware of is how you can get those numbers, how you can know what that looks like for you and how you can know if you are bringing in money. I think it's so funny, like this idea that, oh, we're not doing anything, but then also like so what is our justification for hiring new staff? When are you going to get some help in your role? How are you going to continue to have these conversations?
Speaker 2:And then lastly, because I know I'm talking a lot consultation services in the United States right now are fundamentally not very profitable, and we know this from other practices because we see, especially physician, especially primary care physicians, leaving practices and independent practices in very large amounts.
Speaker 2:And especially as someone who grew up at a time where my family med definitely owned their own practice it was this cute little like rainbow themed family practice and now they closed and they are part of an arm of a hospital we know why this is happening.
Speaker 2:Consultation services, as well as the Medicare conversion factor that is used to price rates for what Medicare will pay out, have gone down, while interest rates and inflation have continued to go up, and so we know as a healthcare community that it is very difficult, whether or not you're a physician, a genetic counselor or any type of consultative service, to really float your practice the same way you were able to in 2015. So my response to them is that people who do financing for hospitals are already aware of that. They're not expecting consultation services to be in the black. What they're expecting is for consultation services to try and build to recoup what they can, because they are already used to balancing the budget at a hospital, at a large institution, through the other services provided, and this is how public health and how hospital administration recognize these things in a way that I think a lot of genetic counselors have this fear source that doesn't fit with what's actually happening practically.
Speaker 1:That's such helpful perspective I just want to share. This has been one of the most demoralizing things about working as a genetic counselor trying to lead this nonprofit. It's really really hard and I appreciated right away, like your optimism and hopefulness about like fixing some of these things and just that realistic perspective. It's really helpful helpful to me to keep fighting the fight.
Speaker 2:so thank you for for all of that and let's fix it, katie, let's fix it together. Let's let's get some of the other groups in your area. Let's make sure we're not just having this conversation with one insurer. Let's have it with all of them. And we can, we can keep pushing, but I I know we've seen success. So there's another uh insurance on a differently color labeled uh insurance plan that I recently had a conversation with, much like the conversation with that we're having with one of your major insurers, and the conversation went well.
Speaker 2:And now they were instructed on how to bill and they were told that, yes, this was not something that was intentional and here, please perform your services and bill them this way. And if you get a payer that says, yep, perform your services, bill them this way, even if it's not the traditional way you bill. Do what the payer tells you. You have payer contracts for a reason. It's really interesting, katie, you mentioned there's this unwritten rule that consistency in billing is key, and I actually think that there's this perception that consistency in billing is key. And it's true that, from a patient experience, one patient should never be charged differently than another patient, but from a payer experience, every patient is charged differently from another patient because their contract, for how much they're willing to pay versus how much they pass on to the patient, and what the patient's plan benefits are. They're all different, right, and so when you find a solution that works for you, you need and the payer endorses it, you follow that plan and you make it work because it'll work better for your patients.
Speaker 3:You follow that plan and you make it work, because it'll work better for your patients. And I appreciate the optimism in all of this conversation because I think a lot of times in life like people just don't know what they don't know, and once you actually get in there and you're able to have those conversations, you can make headway. And on that note I wanted to just put it out to both of you you know what would then be the added benefit of access to Genetic Counseling Services Act and how could we be better advocating for that?
Speaker 1:too, yeah. So, stephanie, you're referring to the legislation that we expect will be reintroduced soon that would allow genetic counselors to be recognized under the Center for Medicare and Medicaid Services, cms, as providers that can be reimbursed. So this has been something that we've been working towards and hopefully we'll see some more activity coming up soon in this area. I'm really interested to hear, brian, your perspective on this. It seems to me like it would be a pretty major benefit, a game-changing benefit, for genetic counseling, because it's not just patients with Medicare that are seeing the effects of this. So many payers, state Medicaid plans and commercial payers look to Medicare for what they consider a covered benefit.
Speaker 2:But what are your thoughts? Yeah, this is where one of those. It's one of those times where I think it's really interesting, especially politically, to hear the word like socialized medicine be used, because I think what a lot of Americans don't recognize about our healthcare system is it's actually much more socialized than people think that it is. We have this systemic barrier as a provider type that is causing us issues with all of these private payers that, technically, can cover genetic counselors. But why are we having these issues? Well, foundationally, it's because all the private payers look to the Center for Medicare and Medicaid Services Medicare and Medicaid to direct and really lead the charge, and so, while we identify as this capitalistic health care system, we have a lot of aspects, both from how codes are priced and how codes are recognized, that really fall under more of a socialized medicine sphere, and this is one of those perfect examples. There's no reason why private insurance cannot recognize a genetic counselor, and yet the very fact that Medicare doesn't has very clearly created this barrier, and a group that I worked with this past year recently published. But when we looked at Medicades which have more flexibility than Medicare to recognize provider types, particularly it seems like in states with licensure. There are still less than 15 Medicades nationwide that cover genetic counselors as a listed drop-down provider type, as an enrollment provider, and yet there's over 30 states that license genetic counselors in the United States. So I really think that federal recognition has a world of force behind it to potentially fix a lot of these issues.
Speaker 2:It is almost certain that if it was federally recognized that then payers would almost be forced to add in that drop-down code for genetic counselors. Most payers use it as the minimum standard, so if Medicare does it, we do it too. I also think that it would really kind of ease up a lot of the billing just routine denial things that it would no longer be this exceptional service. That's odd. It would become this normalized thing and it would really put the reconfigured code 96041 in a very strong place.
Speaker 2:We always envision 96041 as being what we would want to see if we had Medicare recognition. It was this perfect thing. It was meant to improve the code so that when we did have recognition it would be better for everyone involved. It wasn't meant to make things more difficult in the meantime, but it was meant to help improve it and in the meantime I think what we can do is also work on Medicaid, and I've talked about this quite a lot with NSGC and in different forums. But there is clearly a path where Medicaid can recognize genetic counselors and in the meantime, while we're working on federal recognition until we have it, I do believe that that is a very strong opportunity, especially from a patient advocacy standpoint, to ask patients to get involved, because Medicaid's are really wonderful organizations that are often particularly interested in what patients are interested in.
Speaker 3:And to me, that's also that gets back to what you were saying before about the equity issue is that if you don't have especially and I come at this being the parent of a person with a disability right, and so that is the primary payor for our population of people who are medically vulnerable, and so if they aren't able to access genetic counseling services because they don't have appropriate codes where they live, then it is a huge equity issue for a vulnerable population and there are lots of reasons why they may have different genetic testing that needs to be done and they also especially need the guidance through that process Because, again, if you have people with intellectual, developmental disabilities, there are also we know that our people with disabilities are. There are huge disparities in income and in economic stability, and those are also reasons why we need to have those public payors covering it, and so I agree with you that I think that that can be a that could be a big source of support for for that policy.
Speaker 1:I think I could talk to Brian for another couple hours, but I know we've kept. We've kept you on a long time today. Maybe we'll have to do a follow up part two episode soon With some of our successes, any, any, any last comments on this topic that you'd like to share, or until next time.
Speaker 2:No, I want to validate just people feeling frustrations and growing pains. But I also want to give that hope that we are seeing payers recognize issues, that these conversations truly are challenging and that there really are a thousand payers that we need to educate and re-educate and make sure that they're listing gen counselors. But we can do it and they have been receptive when we talk to the right people and we just got to work together to make it happen.
Speaker 1:That seems like a great way to close things out. We're going to be working on putting together some resources kind of a toolkit if you will for advocacy around these issues that we hope we can share with our patients but also other genetic counselors working at institutions all over the country. It'd be great to get others involved. So we will share those resources through our blog and link those in our show notes for this visit or for this podcast. We always like to end with just some shout outs and gratitude and I just want to share. I'm really grateful to our whole team at GSF Nicole, julie, rachel, mariah, annie, many who have been working so hard on these issues related to reimbursement that we've been having at GSF, and also to Brian for just jumping in and sharing his expertise and also just a little burst of hope and optimism that things can get better, which we really really needed about right now. So thank you for that.
Speaker 3:Yeah, and I'm grateful to all the disability advocates, policymakers and medical professionals over the past six months who've been advocating for Medicaid and working so hard on that, and so some of our advocacy calls to action. Our next episodes that we're planning on covering are looking at CRISPR and Down syndrome. So what are the headline grabbers versus the reality of that? We've also been covering vasorotide and the perception of the chondroplasia community about that treatment and also our series on pronatalism. So lots of interesting episodes coming up.
Speaker 1:So thanks again for tuning in. We invite you to share your comments, reach out, let us know of other ideas, that things you'd like to hear, and thanks again. Thanks again, brian.
Speaker 2:Katie. Stephanie, thanks for having me on.
