Navigating Insurance Denials: How Claimable is Helping PANS/PANDAS Families Win Appeals
This is the transcript of the second episode of Flying Through Fog: A Podcast For PANS/PANDAS Caregivers. Note that there may be some mistakes in the transcription.
Krystal: Welcome to Flying Through Fog, a podcast for PANS/PANDAS families. I’m your host, Krystal Vivian, and I’m joined in studio with my co-host Lindsey Forsyth, a mom of kids with PANDAS. Welcome, Lindsay.
Lindsey: Thank you.
Krystal: Thank you for being here.
For many families, getting a diagnosis and a treatment plan is a challenge on its own.
That can take weeks, months, or even years. Once families get the hope of a treatment plan, another battle starts this time with insurance companies. Since PANS/PANDAS is still not widely understood, including by medical doctors, insurance companies are often quick to deny coverage for treatment. Inter Claimable, a company that helps families appeal insurance denials.
In 2024, Claimable launched an AI platform specifically to help PANS/PANDAS families with insurance denials. Today we’re joined by Claimable co-founder Dr. Warris Bokhari, to talk about Claimable and share some information that can help families get insurance coverage for PANS/PANDAS treatment. Warris, tthank you for joining us.
Warris: My pleasure. Good morning. How are you?
Krystal: We’re doing well. How are you?
Warris: Yeah, good. Thank you. Thanks for having me on.
Krystal: Good. Thanks for joining us. So we wanna begin by talking a little bit about your background. Can you tell us a little bit more about your background in healthcare and tech and how that prepared you for the work you’re doing now with Claimable?
Warris: Sure. Um, I’ll try not to bore your audience to tears with, with a long story, but, um, effectively, medical doctor, I trained in London, so the accents,
Warris: non-native, uh, and grew up really in a socialized medicine type environment, but also very much like living with two disabled parents. And, uh, you know, so I saw a lot of ill health from when I was young and that kind of drove me into a career in medicine and, and really a lot of that was kind of centered around like urgent care, uh, sorry, kind of, um, emergency care and, and intensive care, which is where I’ve, where I started my training, uh, and I ended up.
Funnily enough, like after achieving all of that, I ended up leaving medicine to go into biotechnology to work on like new kind of faster cures for oncology and also for infectious diseases. And then that moved me out to the us. Uh, I ended up starting my first company, which was an interesting journey.
Taught me a lot about company building, which I hopefully, you know, tried to apply into this one. And then ended up, ended up taking various roles inside of corporate America. ’cause I just got very curious about US healthcare and, and that was partly from reading a lot of Elizabeth Rosenthal’s work when she was writing for the New York Times, like way back when.
And kind of realizing that many Americans like really struggle to get access to basic healthcare and that can lead them on this kind of irrevocable, irrevocable path to bankruptcy, which is, you know. Just extremely difficult to navigate, extremely perilous. And it wasn’t until I actually, you know, moved to the US and tried to use my insurance card for the first time that I realized how bad this was.
In fact, I just ended up fighting Aetna last week to get access to my inhaler, which was like a very interesting thing. So like the problem still persist even when you run a company, but fights health insurance. Um, so yeah, we can talk about that. But I ended up, um. I ended up taking role GE Healthcare, and then eventually I was recruited into Apple.
And Apple were really very much focused on health, not healthcare. And as much as I’d like had high hopes that, you know, a massive company of an enormous brand could come in and transform how we think about consuming healthcare in the us that really wasn’t where they were thinking. And you can kind of see that in a lot of the great features, which were in the Apple Watch and whatever else.
But they, they didn’t really cut deep enough into like real kind of morbidity that surrounds the experience of, of kind of receiving, uh, healthcare here in this country. So that was ultimately not a long lived as I had hoped. And then I got, I, I took a job, got this way to the audience, Crohn’s, but an insurance company running all the digital health.
And that was intriguing because. It was probably the only place that had a real connection to patients. Like I’d found GE was afraid to talk to patients. Apple, their patients are really consumers. They’re not really sick people. Right. But insurance companies in theory, had that relationship until they found out that really they don’t, and they, they build a lot of their products in a vacuum, which means that they don’t really know if they work or not.
So even things like, you know, when you think about buying an insurance product, it’s not clear whether that would work for you if you got sick. And they wouldn’t know either, because it turns out they didn’t really test it. Uh, and that was kind of the challenge. And then I also observed a denial problem, and I observed that denials and appeals were like two completely disparate experiences and very disconnected and, um.
You know, you had a team that was doing approvals and denials upfront, and then you had a separate team that was managing grievance and appeals, and they were never really correcting the policies that were causing all of these unnecessary denials on the front end. And then, you know, it, I’ll skip over Amazon because it was just boring and I didn’t find them particularly serious in healthcare either.
But when I, I spent most of that time I think, trying to think about what I was gonna do with the rest of my life. And in, in the intervening time, I’d done hospice care for my dad. I’d gone home. Um, you know, he, he passed away and I, you know, I was talking to a lot of male friends at that time who had been through similar things.
And it, we kind of reflected on it as like having the starting gun for your life being fired and you really trying to figure out with what you’re gonna do with the rest of your time. And I wanted to focus on real problems. And when you take out all of like the corporate dogma, what you are left with is real problems and via appeal.
L problem was a really big one. And I was reading yet another Elizabeth Fel article, I think it was in the Washington Post in 2023. And it was intriguing as, um, it was kind of saying that this denial problem, like still very much existed for numbers were pretty staggering. And I was like, well, this is interesting because if you could effectively lower the knowledge asymmetry
Between a patient and an insurance company, you could actually, you could actually get more people to be able to appeal and take action on their own healthcare. And then as a result, you’d get more people on therapy. As a result, you’d have, uh, more people are able to stay in the workforce. You’d have more people who are contributing to the tax base.
And these are things that like, I think everyone in the country should be able to agree on. And when you talk to patients, like most of ’em wanna be working, they wanna be living productive lives, they wanna be around for their kids and their grandkids. And so we were like, well. For technologies of age, we could do this using ai.
What we needed to understand very deeply was the experience. And so, you know, this took us, uh, you know, as co-founders, um, my co-founder Zach, and my co-founder Alicia, we went to work with a clinic in Missouri who was specifically working in rheumatology. And the clinic was also, uh, a guy called Steve Bark, who unfortunately, uh, passed away in September.
Mm-hmm. Uh, very beloved by his community. He let us work with his patients, uh, as did, uh, his wife, a practice manager there, Julie Bark, and you know, her and, and, uh, Claudia Holly do an incredible amount of, uh, advocacy on social media for patients. They’re helping them get approved. So we started appealing for their patients and we started like winning, like, and, and you know, significantly.
So we ended up winning like over 80% of the appeals that we filed. Wow. And yeah, I mean, so it just kind of shows you that if you. If you appeal, you had a good chance of winning. Um, and then we kind of automated a lot of that and we launched a company in October. So that’s kind of the, I guess that was a long story long, but yeah.
I mean, I’ll, I’ll stop there. But yeah, it was, it’s, it is been a ride.
Krystal: Well, I think that’s an incredible journey though, because you take such valuable experience on, from multiple different facets of the insurance, the medical, and the insurance perspectives. Um, and it is really interesting and I think gratifying for, for us and for probably a lot of parents listening to hear you say things like their insurance or developing programs that they don’t necessarily know that work.
Mm-hmm. And that also there’s a lot of denials and, but people don’t, do people typically not realize that they can appeal?
Warris: Yeah. I mean, that’s the fundamental problem, but it’s a huge awareness problem where. Patients really don’t understand any of the rights they have to them. Mm-hmm. Uh, you know, I went through this last week with Aetna, uh, where I got denied for my own inhaler.
I’m asthmatic. I’ve been asthmatic since I was a child, and I’ve been on, I’ve been stable on medications since, I don’t know, 20 years I would say, uh, on the same medication, which works for me. And so when we switched, when we switched insurance for the company over to Aetna, uh, I found myself being denied at the pharmacy counter.
And that is like, probably my biggest fear. Like every month I’m being denied for something that I know I need. Mm-hmm. Uh, I’ve always gonna end up sick. I’m gonna end up probably in the emergency room, you know, I, I don’t sleep well, et cetera, et cetera. Like, it, it has huge knock on effects for me. And, you know, I.
Filed, I actually spent the weekend a couple of weeks ago writing an appeal and it was, you know, probably about 14 pages long, quoting all the evidence and why I need it, and going through my health history, yada, yada, yada. And, you know, I file it and I send it to the CEO of tna. I send it to their general counsel.
So they can’t say they didn’t get it. I send it to the Attorney general, the Attorney General of California, uh, and the governor, uh, because it’s a fully insured plan. So that means like, it was like we’re a small company, so you buy, your plans tend to be a little more expensive. They’re fully insured. Um, and you know, someone on the executive.
Team, uh, the executive concierge team calls me up to explain to me that I, I didn’t need to appeal and this just needs to be prior off and et cetera, et cetera. And I’m like, well, actually no. I know the law. This is a former exception request. There’s a letter in there from my doctor. This is all you need.
You have 72 hours. Have a nice day. Um, and they did not really love that. They were, I mean, they were nice enough, but they, they kept trying to move this from being an appeal into being something else. So the insurers don’t want you to appeal either. And that’s the other thing, because it’s expensive for them to manage.
So, you know, and, and that doesn’t mean that it, you know, it portends to a game. It means that, you know, your appeals have to be well formulated. They have to be appropriate. Um, but yeah, if you appeal, you’ve got a very good chance of winning. And I beat it in under three days. And that was, you know, that was for an asthma denial.
Lindsey: Wow. Well, and I think which PS I’d love
Warris: to automate
Lindsey: coming from a, from a parent perspective in the PANDAS world. Sure. Um, some of the things that you said were. It just hit me a little different is you talked about knowledge asymmetry and Crystal just asked like, do people just not know that they can, you know, appeal these denials?
I think a couple of things are happening at play as a parent in the, in the, the PANDAS arena. First of all, there is a real fatigue that these parents feel when you’re trying to survive this illness within the walls of your home, which we’ve talked, we’ve exhausted that conversation right, with our Surviving The Flares podcast.
Um, but also you as a parent are fatigued by the fact that you have to then bring everything to your doctor team.
Krystal: Mm-hmm.
Lindsey: And oftentimes fight to be even just taken seriously by your primary care physician. Um, and you’re trying to be the one coordinating care among specialists and getting them to communicate and talking to the schools and all of this other stuff.
But when you talk about the knowledge asymmetry, I think parents have historically in that process until insurance. Been the one pushing the cart mm-hmm. For their children and educating sometimes medical doctors and the knowledge asymmetry falls heavily on the knowledge being on the side of the parent because it’s survival.
We have to do that for our child. Yeah. And it’s changing a bit, but then parents get to the insurance world and the as asymmetry to Warris’s point heavily weighs toward insurance companies and parents feel so out of sorts and they feel intimidated and are intimidated by the process, by the people that they speak to, by obviously being tossed around and not actually being taken seriously in their experience anyway.
Mm-hmm. So it’s just this weird paradigm shift that, to your point about the asthma inhaler war, this is one more thing that is hours and hours. I mean, in my case it was months of time. There was no Claimable in the world when I was appealing for my son three years ago, and that was. Days of work in gathering studies, in figuring out what the next reason for the denial will be like.
That takes a lot of effort and that’s something that parents simply have to put on the back burner when the the house is burning down because your kids are unable to function
Krystal: at all. Well, and think about how many families are able to actually put that time in. Right. And Exactly. A lot of ’em may not be able to, especially if you have both parents working or there’s multiple children, or there’s so many different circumstances in trauma.
Yes. So,
Warris: well, I. I mean, perhaps it’s, perhaps it’s worth like talking about how, how we kind of found the pants community Perfect. Which is, I I think this kind of gets pretty, um, gets all of the things you are, you’re talking about in terms of just the level of uncertainty and I think look for any chronic disease and we’ve, we’ve like taken on things, you know, as big as transplants and we’ve taken on, you know, chemo and all sorts of things.
Predominantly we’ve been working in rheumatology and Crohn’s and migraine and, you know, we’re starting to support GLP ones and, you know, other areas. So like it’s, it’s been really, it’s been really interesting to like get really deep on patient experience and what patients go through. Right. When you go into a condition that affects children, much as I had kind of anticipated for a long time, especially with the work that I I’d done previously in asthma.
Um, if you have a sick kid, you’ve got a parent who probably isn’t working, and then you’ve also got other children who probably aren’t getting the care they need, and in some cases they can’t even live in the same house. And that can be incredibly stressful on a couple, on a marriage. Um, you know, a lot of the families that I spoke to.
Where you had Eva gotten divorced, were separated, uh, had been through bankruptcy proceedings, you know, et cetera, et cetera. But I, I, I, I kinda got tagged into Pan’s, PANDAS, you know, one weekend, uh, via a LinkedIn post. And I, I, somebody tagged me into it, can’t remember who, but then I got a phone call saying, Hey, you’ve got to talk to this guy, uh, on LinkedIn and, and perhaps you can help him.
His daughter seems really sick. And, you know, it was a, a chap in Idaho, um, Logan, uh, very lovely human being and his daughter, and they had been, they’d really been through it as a family. Like they had, they’d been through it for years and it was just deeply stressful. And, you know, you could hear on, you could hear the fatigue, you know, in their voices, but.
Significantly. What had happened that weekend is I’d just kind of gotten curious about this Pan PANDAS experience and, and we’d like started building this out in the open. So like, you know, I’d responded into the LinkedIn thread and then every, like, so many parents like reached out to me. And Lindsay, that’s how I met you right, was on that weekend and we spoke and I spoke to like two other moms in Tennessee.
I spoke to like maybe 15 parents across that weekend in like many, many different states. And the experience was strikingly common and so. You know, I finished up Logan’s appeal. That was probably a good, like 20 hours of work that weekend, working with Logan and his wife. Um, we submitted that, you know, uh, we, we got a lot of support from, you know, the social media campaign that we launched, including, like Mark Cuban jumped in on that one, which was very kind of him.
He’s a really wonderful human being. Um, as did Harold Perino and him and his wife Brit, actually worked really hard to change the laws here in California, uh, to mandate coverage of IVIG.
And then I had a very nervous, like Sunday night, because I knew I was gonna come into work on Monday morning. And uh, ask to automate PANS/PANDAS, uh, for the team.
Warris: And, uh, and kind of changed the course of work for at least the next two weeks. And that’s, everybody was like, yeah, we have to do this. And, and not only did we end up having to build an experience that documented the, you know, the ill health of a child, but we had to document what was happening in the home, what was happening to the parents, were they losing their ability to work?
What was happening financially? Because we wanted the family as a unit to be seen by the insurers so they could understand the consequences of these, of these kind of capricious denials. And then above that, we also wanted to put a quote for latest science. Uh, you know, so we, uh, that weekend I got connected to Japan’s research consortium, uh, which includes Jenny f Frankevich and Sue.
Sweeter. I got connected to Diana Paulman and just so many of the. You know, incredible people working in this community and, and laterally then, you know, Susan Manful and you, you just hear all of these stories and it just became kind of an imperative that we needed to support it. So within 10 days we launched an experience for PANS/PANDAS, and we started beating, you know, a lot of these denials and, and we launched, I.
I forget the date now. I think we launched it in, in the middle of November and in that first six weeks up until January, we, we, we beat a whole hell of a lot of cases right up until the AAP dropped, uh, a clinical report, which then changed the complexion of things. And perhaps we wanna talk about that or not.
Yeah. But that was kind of an interesting one.
Krystal: Yeah, I think you, we definitely do. You, Morris, you’re incredible ’cause you’re just passing through literally all of the questions that we have. So, uh, that’s wonderful. And I, I love that. Before we get into the AAP report, I wanna ask, is it pretty much always a denial when a, a family with PANS/PANDAS is submitting a claim?
Is insurance pretty for I-I-V-I-G or any kind of treatment? Is it. Pretty much always a denial.
Warris: Yeah. So we set our kind of beachhead of what we could get done as IVIG, right? Mm-hmm. So what we’re trying to help families with is appeals for IVIG for PANS and PANDAS. Now, there are a lot of kind of ancillary requests that we get that we’d love to help, but we’re pretty small company, so it’s hard for us to do all of this.
So there are basically three different denial types that you as a family might see, which is not medically necessary, not covered, and, uh, experimental, unproven therapy.
Krystal: Wow. And then the AAP report just made all of that worse. So let’s, let’s dive into that and talk about that. Um, the report basically said this exists, but there’s no treatment, right?
Warris: Uh, it was worse actually. It was a, it was a clinical report which was signed by the board of the American Academy of Pediatrics, and they’ve only ever done that six times, like released, uh, clinical reports that were just signed by the board without direct authorship, which is like a little strange for a clinical paper.
Uh, with, in peer review, um, they consulted with experts, but they didn’t say who the experts were, nor did they state their expertise, nor did they state their conflicts of interest, which is not in keeping with kind of gen, with kind of medical ethics for publication, which is very, very much sits outside what you would expect.
And then on, on the other hand, they, um, were selective about the evidence that they chose to review. And they cherry picked studies that, you know, weren’t particularly supportive. They ignored studies that were so, they didn’t take a balanced view. They ignored the Jenny Frankevich C-Suite O Cooper Stock Guideline from 2017, which is, you know, still used.
And then, you know, it states all over the document that it’s not a clinical guideline and should not be used for clinical guidance. And it set out an incredibly onerous path for a family to even get diagnosed, let alone get treated. And it gave the insurers a lot of cover to deny care, uh, you know, for these treatments and.
And a lot of families got impacted. So from the start of January, we started getting denials, like hard denials on case after case after case. And that went on for about a month. And you know, the whole time, you know, we’ve been talking to the academic community about what the strategy had been. Uh, I, I’d written a couple of open letters to the American Academy of Pediatrics, kind of stating my concerns.
And there was, you know, uh, I think there was one week where I just had like a bunch of really sick PANS. Kids come across my desk who were kind of in extremists. I was like, okay, enough’s enough. And so my co-founder and I decided that we were going to write a rebuttal to the AAP report because we, we couldn’t wait for the process of peer review, which is necessarily going to take a long time.
Uh, so we ended up writing a rebuttal to it, kind of citing a lot of the evidence and, you know, we consulted with academics on, on the best way to do that. But it was really like a. An independent piece of work from our perspective. And we’ve included that with every appeal since. And so we’ve beaten every appeal since, and I think we’ve beaten like 10 or 12, I wanna say, since then.
Wow. Uh, which has been really great. And we’ve even inflected some that were denied by sending this kind of document to the insurers saying like, Hey, dunno if you’re aware, but you could be misusing this clinical report as, as a guideline and using it inadvertently for utilization management, which is what insurers call when they deny something.
So we kind of give them the, we give them an elegant out, and it’s inflected a lot of denials. And I think it’s actually hopefully saved quite a few families from bankruptcy since
Lindsey: mm-hmm.
Warris: Probably February.
Lindsey: And I have to say, as a parent, I, I, I’m like the, the, the token parent on these podcasts that I feel like I’ve been sitting here trying not to like Uhhuh.
Mm. Ah, like the whole time you’ve been talking Morris. I just need to say to all of the parents listening, do you not feel so seen and heard right now? Like when, when you were talking about how you got involved in the PANS/PANDAS world and this AAP thing and the way that insurance does its thing, you have wrapped up so concisely and articulately the experience of the PANDAS parent without actually being a PANDAS parent yourself.
And for so long, I always felt like the only way to understand that is to be a Pan’s PANDAS parent. I just wanted to interject and say everything that you’ve said is so, so absolutely real in the day-to-day lives of these parents, and it feels so good to have that validation. And I I just wanted to ask, like, let’s say this AAP information is something that.
That’s in the way of a parent, not even in the insurance world yet, but in terms of just going to their pediatrician and the pediatrician says, yeah, no, that’s a controversial diagnosis. Look at this. There’s, you know, the AAP said, we don’t even know what causes it, that we don’t really understand the treatments.
What do you suggest to people when they’re even just at the diagnostic stage, just as somebody who understands the dynamic here, and as a doctor yourself? I know I’m not asking you to give medical advice, I’m just saying, is there another resource that they could go to if they’re not quite at the level of I need an insurance appeal so I can use Claimable?
Where could they go to get more information to even just get a diagnosis when this publication is being used against them at the beginning stages
Krystal: and being misused? Because it even says this is not to be used clinically. Right.
Warris: Yeah. I think, I think unfortunately this has set quite a few obstacles for families, right?
Like the April Beck case, which was, uh, recently published in the Wall Street Journal, like they had a hell of a time getting care even in their state. So part of the story, and there was April had to drive with her daughter, Emily, nine hours from Georgia to Arkansas to even get care, uh, because the hospital near her mm-hmm.
The clinic near her didn’t recognize Pan as a diagnosis.
Lindsey: And nine minutes in a car for some of these kids is hard. That allowed nine hours.
Warris: Yeah. Yeah. I mean, it, it’s a lot on a family, right? So I think. I think there’s a lot of education that needs to be done. I think the one thing that the AAP report did that was quote unquote helpful was recognize PANS as, as, as you know, quite possibly a real condition, which is more than they’d said previously.
Right. So I think that, I think that might help, but almost nothing in there is helpful. Like families are gonna be substantially, unfortunately it seems out of pocket to um, kind of figure out that road to getting a clear diagnosis. And a lot of the doctors, it seems, are reluctant to deal with insurance and denials.
And so it can take families, spoke to a family yesterday who got approved, it took them eight months. Yep. I think, um, to, to kind of navigate the denial process. And that’s a very, very long time. You’re dealing with a sick kid, a parent not working, et cetera. It’s extremely hard. Mm-hmm. So I don’t know if I’ve, I don’t know if I’ve unfortunately good advice for a family trying to get, um.
Get diagnosed, but I can tell you that there’s some really good doctors who, like people speak incredibly highly of. I mean, uh, mark Pak at Harvard is in incredibly kind man. Um, you know, the, uh, Dr. Melamed is incredibly, uh, well recognized. Beth Latimer mm-hmm. Her name comes up again and again. Same with Jenny f Frankevich.
Uh, and Diana Pullman has been a great resource for so many families that there are literally parents who keep telling me like, Diana Pullman saved my kid.
And that starts with, with diagnosis. So like, and there are all of these, you know, Facebook groups, which I’m not allowed in because I’m not a parent.
I don’t have a kid with pants. So like, but I, I hear But they’re great resources again for like par like parents learning of each other Yeah. As to like the best way to manage each individual stage of this chain.
Lindsey: And parents in our show notes, we’ll be happy to provide some different, um, organizations that will have directories available for you to find actual care.
Um, so that’s, I’m glad you brought that up worse. That’s a great point. Anyway, I’m sorry to digress, but I did want to just acknowledge how eloquently you spoke to the parent experience before we got into the brass tacks. ’cause it was
Krystal: validating for sure. I think it’s incredibly important. So I’m glad that you did.
I wanna take a moment and now kind of get into the practical step-by-step process of you’ve submitted the claim, it’s denied. Now what do families do? What should a family do right after receiving that denial letter and specifically with using the tool that Claimable has?
Lindsey: And can I back up really quick?
Yes. You said, submitted the claim. Parents, um, if you’ve not been through that process before, typically in order to submit a claim for pre-approval for IVIG, um, in my experience and the experience of the families that I’ve worked with, um, that starts with, okay, we know we’re gonna pull the trigger on this treatment for our child.
The, that usually starts with the. Ordering physician writing a letter of medical necessity and submitting that to insurance for the, um, pre-approval. So Okay. That’s the first step. Yep.
Warris: Which will invariably get denied, right? Yes. Which is kind, which is kind of a journey. Right. Unfortunately, uh, these, these, um, uh, you know, initial claims get denied and it’s often reflexive and it feels like it’s being done by ai.
Mm-hmm. And for quite a lot of insurers, it could well be being done by ai.
Lindsey: So don’t despair parents if it gets denied. Yeah. Know that, that’s more than likely the norm. That Yeah, that’s,
Krystal: yeah. Just a step, a stepping stone and inter Claimable.
Warris: Yeah. And so we built something where, you know, and it’s designed to be self-service and actually, like, there have been parents coming through that I’ve, who get a, who get approved that I’ve never met.
Mm-hmm. Which is, you know, Lindsay from like day one. That’s very different from where we were. Like they’re just using the tool for themselves and it’s, it’s built effectively as a questionnaire where you kind of upload a copy of your denial letter. Uh, no problems if you don’t have it, but sometimes it’s helpful in case we do need to help you, your insurance card.
And then we ask you a bunch of questions and the questions will range about your child and you know, their details, uh, all the way into like how their symptoms affect them and like what loss of independence they have as to whether it’s taking care of themselves, you know, uh, in terms of showering and dressing, their ability to go to school, school performance, sports, et cetera.
And we really try and understand what they were like before they got sick, and then what happened after they got sick. We then ask questions about medications that you’ve tried, um, which, you know, ultimately you want to seem reasonable in your appeal because what you’re saying is, I’ve tried all of the reasonable things.
I tried steroids, I’ve tried antibiotics, I’ve tried this, I’ve tried that. And you know, we, we allow you to catalog that and show the insurer that you’ve made reasonable efforts to, um, uh. To, to kind of not spend a, you know, a ton of money on an IVIG treatment. So we, we do that. And then we also ask you to tell us about your doctor, because quite a lot of these PANS doctors are like long time experts.
Um, you know, Dr. Kovich is a name that comes up a lot in, in Chicago. Um, I’ve never met him, but he, he comes up and he’s very, very well respected. Years of experience, Jenny, years of experience. And you just get the sense of this when you, when you read these parents talking about the progress their child has made.
And the other thing we, I. Ask for is whether they’ve tr tried IVIG before and whether it made an impact. Because you know, one of the things with insurance denials is if you’re trying to prove it for the first time, you wanna, you wanna show that everything else didn’t work. Ideally, like that’s, that’s really the journey you’re on.
You’re kind of saying, well, we tried this and it didn’t work. We tried this other thing, it didn’t work. We exhausted our op, our options. And now at IVIG, if you tried IVIG. Four. And you said, well actually there was an improvement and you’re able to say what the improvement was and it’s backed up in the clinical notes.
You want to tell that story because it’s an essential part of kind of proving that continuation is medically necessary. And then we ask about you, we ask what you, the parent, like what aren’t you able to do? You probably not sleeping, you might not be exercising, you might not be performing well at work.
You might be being passed up for promotion. We have like a guided experience that kind of walks you through that and also like asks questions about other kids in the home and whether they’re able to live there or not and you know, so on and so forth. And we’ve really been informed by like you, the community who’ve told us at every step when something needs to be better because we want to make it better for you.
So all of this probably takes. I wanna say 45 minutes to an hour for a PANS case. Uh, and you get an appeal in real time. So you, the appeal is generated in real time and it takes your story, it combines it with the evidence that PANS, uh, that PANS is treated successfully using IVIG. And there’s a lot of studies that we’ve, we’ve pulled and, you know, thanks to the PANS Research Consortium and all of the parents who’ve like, provided like links to studies which have been super beneficial.
Uh, and then we also show cases of precedent where the insurer’s been beaten before. And this is like one really important thing where we wanna keep improving it. But every time that you win as a family, we would love it effectively that these families become precedent for other families. And we anonymize the case details and, and include a, a summary effectively of, you know, the insurer denied it for this reason.
Uh, the case was reviewed, the case was overturned effectively, and, and this was what was cited.
Lindsey: And how would you like parents to be able to provide that information to you?
Warris: Yeah, so I mean, write to us, let, let us know if you’re happy to do that. And, you know, in, in other, in other cases what we’ll do is we’ll just, we’ll just plainly anonymize and de-identify things that we have and write a very short synopsis.
But normally we reach out to parents and ask them before we add things. Okay. Because we recognize that with children, it, it can be, it’s a privacy concern sometimes even at the most anonymized level.
Lindsey: Well, and I know that parents have asked me because Morrison and I have worked. Yeah, with some families as you were developing this tool, um, as, as they would go through the process and they’d be like, well, what about this?
Or what about that? And the team at Claimable was always very quick to pivot and adjust and do something different on their platform and like really be open to any constructive feedback to be able to make it better for the next family. And I have had parents be like, what can we do for them? Mm-hmm.
Like, what can we do for him? And I know we’ll get to that a little bit later, but parents, if, if you can do nothing else to say thank you, it would be really great to do, please do reach out and let them know because we are pioneers for the next family. I mean, we’ve talked about it on this podcast before, so please don’t be bashful about reaching out to the team at Claimable and letting them know when you had maybe things that didn’t go well, but certainly when you have something that can become precedent for the next family that they could incorporate.
Mm-hmm.
Warris: And that’s, and, and that you take the April Beck case, right, which was a United Health Denial. And United, you know, United now know that they shouldn’t be denying. You know, kids for PANS, there was another pan style like the week later that they upheld initially. And, and that’s when we had to like submit the new letter.
But they’d said to, they’d said to April on the phone that actually they’d planned to change the policy for all, for all, all of these cases, and they haven’t done so. So, you know, we, we have to keep the pressure up and have to make sure that these families are seen and do it in the right way if it’s constructive.
And I think we, I think we can get there. I honestly think that there’s gonna be enough of this precedent that at some point the insurers are just gonna move the bar and just be like, okay, you know, we, we understand that this is gonna be cheaper and Yep. You know, than a, a plasmapheresis or an admission for feeding or any of the, or any of these other things.
And employers when they get involved, this is like another like key thing if you’re an employer sponsored plan. So you buy your health insurance from your company. So that’s typically a company that has a thousand employees or more, um. You know, your, your plan is considered self-insured or employer sponsored.
You should include someone senior at your company. Don’t include the low level HR person. They have absolutely no authority or ability to make a decision. But if you copy the CEO of the company or the Chief Human Resources Officer, which can be quite scary to do, but if you do it. Yeah, we’ve seen a lot of these cases get flipped really quickly because ultimately they are the decider and when they read what these families are enduring, like, they’re like, yeah, no, we don’t want this for our people.
We actually want this problem to go away. And they also don’t wanna deal with Presentism. They don’t wanna deal with like an employee who’s not fully present because they’ve got all of this going on at home and they just know it’s an awful situation. I, I, I’ve seen more often than not, employers be very supportive.
There’ve been a few instances where I’ve seen where the employer is in desperate financial. Trouble, they don’t wanna pay claims. Mm-hmm. Uh, I’ve, I’ve seen that maybe twice. So, uh, yeah, I mean that would be, that would be my advice. And, and, and to that point, like, we’ve built an address book that when you, when you get your appeal after that, like 45 minutes to an hour of working through the Claimable flow, um, we have recommendations of who it should go to at the insurance plan, uh, at your state, which can include, you know, governors and attorney generals and or the Department of Labor.
We’ve had the Department of Labor for these self, self, uh, funded, employer sponsored plans, reach out to families asking if they need help, because the people at the Department of Labor have been so horrified to see what’s going on, that they then put pressure on the insurer and on the employer to get this overturned.
Lindsey: And that’s the knowledge. So that’s been of asymmetry you were talking about earlier. Yeah. You’re now giving people connections to the knowledge to the network that they didn’t know existed to support them.
Krystal: Yeah. Why would anybody think that? Oh, I think the average person is like, why would the governor care?
Why would the Department of Labor care about me? I’m just one person. But when you look at it from a macro level, higher up, if it’s dozens, hundreds of families, it impacts the entire economy. Yeah. If parents aren’t able to work, it impacts the companies and that just scales up from there. And the more pressure, I think war I, what I loved what you said earlier is we have to put the pressure on these insurance companies and the more people that do it, and the more pressure that is put on them, the more likely change is gonna come.
And if we just say, oh, well they said they’re gonna change these policies. Mm-hmm. They approved a couple of claims. Um, I think that it sounds like the goal is not to. Have to appeal denials forever. The goal is to get these companies to, yeah. Not even deny it in the first place. Mm-hmm. The interesting thing wore us about Claimable is that you’re ultimately in the business of putting yourself out of business, of not being needed.
Because the goal, the goal is to help families. I,
Warris: I, I truly hope so. I mean, we, we, it, yeah. It’s a, it is a, it is an odd one. Um, we didn’t start this company. Because we wanted to. Mm-hmm. We started it because we had to, um, I, I waited a, like a, a good kind of 10 plus years for someone to solve this problem.
And I’d hoped that it would’ve got solved with healthcare reform under the Obama administration. It didn’t, it actually kind of mutated into a slightly like more opaque, worse problem. Uh, I’d hope that successive administrations would like really chip away at this problem and, and kind of make it better, but it somehow hasn’t happened.
So, like it late, it leads you to this kind of conclusion that the solutions that we need are not gonna be political. They’re gonna be economic in the first instance. So, you know, it, it gets expensive for these insurers to review appeals. For every appeal they review, it costs ’em about $800. Um, you know, which is kind of crazy to think about it.
Like, for them just to physically receive it in a mail cost them, cost ’em a bunch of money, whether they approve it or not.
So at some point it becomes like not worth it for them to deny all of these claims using ai and they have to like really use like real humans who are qualified experts who, you know, know what they’re talking about.
Or better still just don’t deny a case where, you know, the doctor on the other side is a world leading expert. We had a case, I don’t know, the other day. It was like, I think I spoke to you that day, Lindsay. It was completely exhausting, but it was a liver transplant case that like I got tagged in on. On LinkedIn again.
And you know, it was a young chap and it was just awful. And he got denied and you know, he’d got approved for transplant and he had about four days to make his window. And the insurance company decided that they knew better than the ethics board and his transplant surgeon and denied him. And, you know, overnight I worked with Mark Cuban’s team, funnily enough again, and this is Mark diving in for a complete stranger to, um, help this guy try and get a liver.
And we got it flipped overnight and it was like 18 to 20 hours of straight work. Uh, I don’t wanna be doing these things. It is completely exhausting and I just wish that they. Would defer to a, you know, a leading center in the country. And same for these PANS/PANDAS families. These docs have seen thousands of these kids.
Mm-hmm. They know they get better. There are studies that show they get better, like, stop practicing medicine. I, I just want the insurers to stop practicing medicine.
Lindsey: And, you know, and, and I’ll just speak to my experience, my first experience in getting IVIG covered for my son, our peer to peer was not even done by a peer.
So my doctor basically ended up talking to somebody who knew nothing about PANS/PANDAS to have an educated conversation about why this was necessary for my child. Um, we’ve, I I, I’ve worked with families that have seen circumstances that you’d be like, I can’t even believe that actually happens to people.
Like same insurance company, same treatment, same doctor, same patient in January, approved in November. Denied. Like, it just, it is, it is bonkers. Can I break this down just a smidge more? ’cause you were talking about some really important things worse that I wanted to be sure that parents understood. If I were myself sitting seven years ago in the seat of just embarking on this adventure for the first time, I wanted to explain really quickly to parents, and feel free to chime in if you can say this in a more, more eloquent or accurate fashion, but my understanding, I went to appeal our first IVIG and I was told that and I went like guns a blazing.
Like, Hey, this is Indiana State Legislation. IVIG must be covered for PANS/PANDAS patients. Look, it’s right here in the law. And they were like, oh yeah, but you’re not under the right plan. So you’re an A SO plan, you’re not fully funded, and insurance companies are only required under state law to pay when you are fully funded.
Because we as an A SO plan are actually. Under federal legislation and there’s no federal law that protects you as a family, so that doesn’t hold water. So I wanna be really clear with parents. ’cause a lot of times when I talk to parents about insurance.
Now I basically am like, just go straight through to Claimable.
Not a thing, like just Warris will take care of it. But parents need to understand that there are really two silos that you operate in. And if you operate under a fully funded plan, which is where it’s state funded, that’s under the state. Okay. The state regulators, I should say. And we see families get this wrong actually, which can cause, um, denials where they don’t recognize that they’re on a fully insured or state regulated plan, which is typically for a small company versus a self-insured, a name doesn’t make any sense to a normal person.
A self-insured plan is for a large company, typically a thousand employees or more. And the, the state, the, uh, self-funded plans are regulated federally by the Department of Labor. They fall under a law called erisa, the Employment Retirement Investment Savings Act. So I will say that while, um, while states are reticent to get involved in, uh, federal, federally regulated plans, I’ve seen New York, I’ve seen California, I’ve seen Missouri, I’ve seen Illinois.
Um, I’ve seen, uh, North Carolina, uh, get involved in various cases. From the Attorney General and the Governor’s office, like when they start calling, you know, the CEO, uh, you know, United or Cigna, it’s a very bad day for them.
Lindsey: So parents know when you go into this, have an idea from your benefits.
Mm-hmm. Which, which of these columns you fall under, because that will inform how this plays out for you going forward. I just wanted to make sure that was clear to parents. Um, ’cause you were talking about that. And that’s something that I did not know before my process. So that was a little bit of a, I don’t think most people punch in the gut.
Yeah.
Warris: Um, yeah. The other thing I’ll say is that like we, I think there’s some things we need to improve. Like we, we recommend like a number of recipients that it should go to. Um, we, we see families deselect everything but the appeals address. So like whichever insurance company you will get denied. If you just send it to the appeals address, you will get denied.
Great advice. You have, you have to send it to, I would say like as many, if not more people as we recommend. And I would include if you, if you, you buy your insurance from your company, I would include for CEO give them a polite heads up. The letters are not rude, you’re just advocating for your family. My guess is, and from what we’ve seen, most of them will try and help you.
Uh, the more people you send it to, you know, the more, the more eyes are on the insurer. And then eventually, because this is going to people who have legislative authority, those political solutions will come, laws will get passed, but it will take a long time. It will take longer than any longer, a longer time than any family has individually.
But on aggregate, you’re providing, you know, lawmakers evidence that these problems are not one-off, it’s not, you know, one Wall Street Journal story or one ProPublica article. It is systematic what is happening in this country.
Lindsey: And that’s a great point, and I know we’ve talked about it a bit. I appreciate the reiteration because we’ve said so many times in my, our little community of, of parents and, um, even in the bigger groups is as parent a, my experience, my trudging through all of the thick mud becomes the roadmap that guides the next family.
And the same is true in using this process, using Claimable, but connecting all of those extra contacts that you have been given by Claimable so that our experience does become a roadmap and does make the road a little bit smoother for the next family. And be proactive about
Krystal: advocating for yourself because mm-hmm.
The, like, I think a lot of people would be intimidated to CC their CEO o mm-hmm. But you’re accessing your benefits.
Krystal: You’re, that is, that is the main point here. And I guess Warris, can you talk a little bit more about that, about the importance of CCing your employer, CEO?
Warris: Yeah, so the employers are on the hook.
They are ultimately, you know what’s called the fiduciary of a plan. And they have an obligation to you as the beneficiary, whether it’s a retirement plan, a 401k, you know, a health insurance plan, whatever it is, a life insurance plan to operate that plan fairly. And not just in the interest of minimizing cost.
Like, I can’t remember what the precise words in the law are, but like they have to act in your best interests. And there’s specific rules around, you know, having a process for appealing, have a proce, having a process for exceptions. So, you know, while the law is, you know, more vague than a lot of state laws, there are a lot of protections in there for patients that can be exercised.
And the other thing that we do, which I think is. Interesting. We, we need to tighten this up a little bit, but we request all the documents that the insurer used to deny your care if they continue to uphold the denial. And what’s important about that is that they have 30 days to provide it to you, or there’s $110 a day penalty that’s effectively unlimited.
I found this slightly. Document online reached out to a lawyer who wrote it, who won’t talk to me if he, how it works for an insurance company. But, um, yeah, you, there’s a like almost uncapped penalty for like not providing these documents to you fully, uh, which you can take the insurer to small claims court to go get.
It’s a completely administrative thing where, um, you know, they either provided you the documents or they didn’t.
Lindsey: And another thing that you have said to me in conversation is to not only, I understand that Claimable requests those things, but as like, what can I do as a human being trying to advocate for my kid is understand who, who denied this, like what were their credentials?
Like really ask the questions of the insurance company too, and trying to gather this information. We know as a group of parents in the PANDAS PANS Arena. We are the parents that will move mountains for our kids. We will run through brick walls as I think any parent will do. And when you can equip yourself with more information to come back and say, wait, wait, wait.
Who, who was the one who said no to this appeal? Like, what were their credentials? I think that that was a really great point that you brought out when we were discussing a family that I was helping. Um, because a lot of times people don’t even know what they don’t know to ask those questions. So I just wanted to remind the listeners of something that you had said in the past too about just understanding all of those important details as you go to fight it again.
Warris: Yeah, let’s break that down a little. Um, in PANS, you’re talking about a fairly rare condition that exists in the pediatric population. I’ve seen a number of cases which have been denied by an adult emergency medicine doctor, and I did emergency medicine in England for like four to six months. I can’t remember, it’s a long time ago, but it was you, yes, you see children, but you don’t see a lot of like rare disease children that would be, you know, being seen in clinic by a specialist in peds neuro or developmental peds that you just don’t have that exposure.
You do not, and. So it is kind of not appro then not appear. And you know, I’ve seen, you know, other cases where, you know, again, like we had a, another transplant case where the transplant was denied by a family medicine doctor. Family medicine doctors are not part of a multidisciplinary team that approves and denies transplants at the ethics board level.
So not appear. So this happens again and again and again and again. And if you have an expert physician, like if, you know, if you are, if you’ve got a, you know, Jenny f Frankevich or you know Isaac Malamed as your, as your doc, you know, or any of the other like great docs at these centers who’ve like published clinical trials and, you know, research and work with families for, for decades.
Yeah. The chances are that the person on the insurance side isn’t doing that and they’re just some outsourced doctor from an agency. If you’re lucky they’re a pediatrician. Right. But oftentimes they’re not.
Lindsey: Right. That’s huge. So huge. That’s huge
Krystal: Warris. It sounds like there’s things that parents could be looking out for.
From the insurance side, but on their side, what are some common mistakes that families might make while they’re appealing denials, um, that they need to make sure that they are doing, in addition to copying all of these people, getting all of these medical records, what else, uh, should they be considering?
Warris: Yeah, that’s a good question, right? I mean, I say stay resilient, number one, because you could be, you could be fighting for a while. I mean, I will say most of our overturns are decently quick. They’re usually within a couple of weeks, I would say, like sometimes they’re really fast. They could be within like.
Three to four days. And then other times they’re within a, you know, a few weeks. And then sometimes if you get denied again, then you have to kind of go in pretty hard and ask for all of the data that they used and then reformulate a new appeal, um, based on the information that you get back. And that will include who reviewed it, why they denied it, et cetera, et cetera.
And, you know, what I would then do is just email the CEO of the insurance plan and be like, I, I’m gonna give you an opportunity to do the right thing. And like, you know, oftentimes I’ll write some of these emails with families, but you know, uh, I’m gonna give you the opportunity to do the right thing here and overturn this.
These are all the reasons why you’re wrong. Uh, and we will win an independent medical review because no one wants to go through the time and expense of like having to go through an independent medical review, which is an option to you as a kind of a next step. But oftentimes, if you can do this at the administrative level, at the plan, it’s just faster.
It’s faster and cheaper for everyone. And like, ultimately. As much as this is about, this could be about like scoring points in an insurer. It’s not, it’s about helping people and helping families and getting to the right answer faster. So, and then the other option is like, if you get all of the documents and then you end up, you know, a lot of families have asked me about suing insurers and effectively what we do is we streamline legal discovery, right?
So if they deny you, you’re gonna get all of the documents they use to deny you. And you are also submitting something very complete into the record, and I’m not a lawyer, um, but spoken to like several, like ERISA lawyers of late having a full and complete appeal. What it’s gonna come down to is ultimately what was the evidence you provided and what was the evidence they used to approve or deny you?
Lindsey: One thing I wanted add too, um, I’ll, I’ll just talk about a little bit about my experience. Um, my first time we got IVIG, we got it approved. Ultimately it took 10 months, so it was about a year later that we were able to actually get the IVIG. And it was approved and I paid what I thought I needed to pay.
And we went on our merry way. And I went back about two years later to get another IVIG for my son. And I was told by the surgical center, we won’t allow you to get iiv. I mean, we were like in a, it was a time crunch this time around, and they said, no, you can’t because we never got payment from your insurance company for your last IVIG.
You owe us $40,000. What? And I was like, I’m sorry, excuse me. And they were like, yeah, they never paid. And the, the surgical center, somebody dropped the ball and they never told me. So I’m like, now I’m like, I, I could have been working on this for the last 18 months and now I not only cannot come to the surgical center for IVIG, but I now owe you $40,000.
I was like beside myself, as you can imagine. And. One thing I tell people going forward, of course that was I, I live my, uh, ex advice in pc, which is pre-claim able time and ac, which is after Claimable time. So this was all PC and I, by the grace of God, I think it’s my dad and brother are both attorneys, so I’ve just genetically been trained to save everything and document everything.
I was able to go back, I knew who I spoke with, what time I spoke with them, what date I spoke with them. Yeah. All of my emails were printed out and in a file, thank god, two years prior I had created. A paper trail of everything and or I had documentation of first and last name of who I spoke to and I was very clear to let everybody know going forward.
I appreciate that you are recording this call because I may need to use this at some point. So document everything. You don’t know how long you will need it, but make sure you have also had everything paid up before you then submit, you know, two years later, whatever, for your next one so you don’t end up in a, in a, in a jam.
But that was my experience. It was crazy. Yeah. My
Warris: top, my top tip there and I have a funny story on recording things. So, uh, my top tip there is every time you speak to someone, obviously get their name. Like oftentimes they won’t give you their last name, um, because they’re, you know, in this climate, they’re kind of afraid to do that.
But I would respond contemporaneously as an, at the same time in email, um, back to whoever it was. So like, say for example on the weekend I was working with the executive concierge Aetna and I just responded that every time they try and start a new email with them alone, I would just keep putting the CEO back on the email and their, and, you know, their, um, general counsel to like, not let it like move off their desk.
Mm-hmm. Like, this is gonna stay here until you approve it. And I would just confirm back in writing what we had talked about.
Lindsey: That’s a great idea.
Warris: You know, and I had asked if I could record the call and the answer was no. And I live in a two party consent state. So, but if you, if you don’t Nova consent laws in your state, if you don’t need to ask for consent, then I would record it because it’s useful.
But I would always make it clear to someone that you are, you, you know that you are recording the call. That’s super helpful. You don’t need that consent. If you live in a one party consent state.
Krystal: Does it matter where you live? Not necessarily where the person on the other end of the phone call is.
Warris: Mm. I think it’s where you live, but I’m not a lawyer, so, so do check that.
Lindsey: Yeah. Right. Yes. Okay, so I have another question to throw at you. I had a family last week who’s in a jam, and so I, I’ll, I’ll again go back to pre Claimable after Claimable. They would handle things differently now with the information that they now know if they were appealing now, and I think that happens to a lot of parents, right?
Like, you don’t know what you don’t know. You think, okay, I’ll do what the insurance company tells me. I’ll just like give them this information they asked for and not really hold them to the fire. And then I gave them the information and then the appeal reason, the denial reason changes. So what happens what?
What do you do with a family who has already gone through the appeals process and was denied by external review? What do you suggest to a family then? Like this particular family, their doctor is basically moving to a different IVIG serum and trying to reapproach it through that way. And maybe that’s what they do.
I don’t know. But do you have any advice for people who didn’t know about Claimable and the benefit that you provide and they’ve already gotten all the way through to where they feel like they have no more options. What would you suggest a family like that do?
Warris: Request the claim file? Would be number one.
And I would try and find an angle, um, which would allow you to appeal it. Um, the other thing, you know, I was working with a mom a couple of weeks ago who switched insurance plan for her kid, uh, because she happened to be in a state where there is a bill that will be passed, um, you know, that will be protective.
And so she took the kid off the self-funded plan and put the kid on a fully insured plan as in state regulated plan where the insurer didn’t have the say in it and the insurer still denied it. We appealed it and we beat it in days because of the, because of the Affordable Care Act. If you were to change insurance, they can’t discriminate for preexisting conditions.
So like that, I mean, there’s a lot of things changing since January. Mm-hmm. But, um, it, I, you know, I really hope we can keep the preexisting condition protections for families.
Lindsey: Yeah, that’s the question I was gonna ask is I, I, it may have been the same family, but I have another family who they went to, um, their, her husband started his own firm and they were in a, the, what they thought was a beneficial situation where they could now choose their insurance.
And they chose an insurance and it did not go well because of the preexisting condition. And I think they contacted war and it was an obvious like, oh yeah, that’s definitely why. So that’s another key nugget. Yeah,
Warris: that, that was an interesting one. So what was unclear in that situation was that there are, and I didn’t know this, and this would mean I’m always learning from families.
There are plans which are not, uh, you know, affordable Care Act compliant on the exchange. They’re like limited insurance. They’re not full insurance plans. So the answer there is that they’re designed to be supplemental is you would need to buy a plan underneath it. I think you’d need to talk to a broker.
But the answer there would be to get a plan that would be your first dollar insurance. That would be full insurance that would cover it. But they can exclude on the supplemental plans for pre-existing conditions.
Lindsey: So if you’re looking at, seems like that’s legal to buy into for your family, just make sure that they are plans that are under the Affordable Care Act.
Warris: Yeah, exactly.
Lindsey: All right.
Warris: For as long as it survives, which we hope is at least a protection is a long time.
Krystal: Absolutely. War. This has been an incredible conversation and I think there is so much here, uh, that we will be combing through. Uh, we will have extensive notes and resources from this conversation in our show notes listeners for you. Um, to wrap up, I have a couple questions for you. Sure. One is, how can listeners connect with Claimable in order to start this process?
Want to appeal their denials for IVIG?
Warris: Yeah, so it, it’s ready to go. If you go to www.getClaimable.com and there, there’s a banner for looking for PANS/PANDAS support, or you can click start appeal and you can just get going and it’s free and we want to keep it free for PANS/PANDAS family.
Lindsey: Thank you.
Thank you, thank you. Thank you. Um, uh, so the other question is be, so you talked about what PANS/PANDAS families can do in terms of helping to become precedent for the next family, letting you know when things go well, letting you know when they do not, um, what, what other things can we do to support one another and to, to support Claimable as you guys are supporting us?
Is there anything else that we’re leaving out that would be helpful for you to get from the masses of parents out there who are using this, um, on a daily basis?
Warris: I mean, for the most part, like, please use it. Uh, we, you know, we want you to be successful and we, we love hearing the, um, stories of families who’ve like beaten the system and, you know, their kids getting back on track and their lives getting back on track.
It means a lot to us as a team, uh, to, to have, kind of have the things that we built be used and actually like, get results in the real world. So, um. I, I think that’s, that’s really it. And also if you’re seeing things like, if you’re seeing behaviors from insurers which are changing. Mm-hmm. Like for example, I didn’t know, like I had worried about the AAP report, but I didn’t know that it was being cited until a, a parent sent me a denial letter, uh, from their self-funded plan that cited it as reference number one.
And I was like, oh. I was like, oh, wow, this is happening. Yeah. And then we saw, you know, you know, one after the other, after the other, after the other. And that kind of moves you from being powerless to like, coming up with a strategy to then make everyone powerful. And then my only last thing is like.
You have, you as parents are gonna have to shake people out of this kind of learned helplessness that seems to pervade everything in healthcare. Like you, you, you are not helpless for sure. You can take action and you have agency and you can fight back against these denials, but you are also gonna have to motivate a lot of doctors to like fight with you.
And that might include providing letters of support that might include being more organized and less organized. It might include if your child needs emergency care to convince you know, them, that this is a real condition. Mm-hmm. Um, there’s, there’s a lot of that. So, and, and you know, as Kara was saying, keep excellent notes.
I think that is, you know, really essential times things you’ve tried, dates, how medications worked, how they didn’t work, all of that just builds to the record. Yeah. Um, that just really essential. And the other thing is like, don’t be fobbed off by a very, very low level person at an insurance company. If you send an appeal for chances are that someone extremely junior is gonna call you and they’re gonna try and bury it at that level.
Don’t let them do that. Like, always, always, always, like, move that up the chain and make sure if you’re having a conversation with a senior person and you’re documenting that really well.
Lindsey: Thank you. That’s all very, very good advice and I think it was a great way to end. Wanted to add really quickly parents, if you do, uh, want to communicate anything good or bad to Claimable and help to, you know, help other parents pivot and also build cases for other parents.
Warris, is it still okay to do support@getClaimable.com for an email address for parents to send those things?
Warris: Yeah, of course. That’s great.
Krystal: Okay. All right, perfect. Perfect. Thank you. I think that, that your last advice kind of helps us pivot to how we like to end to every episode Warris. Uh, you have done incredible work.
You and your team, ACC Claimable, are doing absolutely incredible work, and I cannot thank you enough for everything that you’re doing. Um, and the, it’s, it’s a long fight, but you’re doing a lot of work to help make families feel hope and to take that next step and to gear up for that fight and take action.
Um, we will always like to end every episode with a story of hope so that other parents going through Pan’s PANDAS with their family know that there are good things on the horizon. I know that you’ve touched on a couple of things, uh, throughout this episode, but just as part of this first story of hope, can you share a brief story about a family you worked with?
Who successfully appealed their insurance company. Denial.
Warris: Yeah. I mean, they’ve, they’ve been a bunch, right? Um, in the PANS Panda space, there was one yesterday, which was a really awful situation. Um, and, you know, just really heartbreaking for the family to see, you know, their child deteriorate so much and they’ve been through it professionally as well.
Like, you know, one parent wasn’t working, the other parent, um, was really having, um, you know, a, a a lot of issues caring for that child. And the, they finally beat the denial after like, many months. I think it had been like eight months. And that really was great. I mean, it was lovely. It was lovely to see that come through as, uh.
As a message to my phone, like letting me know that they, they’d, uh, beaten, they’d beaten this, and they can get back on the road to recovery. I will tell you that like, you know, I, I keep in touch with April. I keep in touch with Logan. I keep in touch with a lot of these families, like over time and like, I just want to like, hear how things are going and, um, you know, um, it, it’s a road to recovery, but it does get better.
I, I, that’s the one thing I’ll say, like it does, it’s not necessarily a straight line, but it does get better.
Lindsey: And parents, I can say, um, you know, in just my experience of getting to know you Aris, at the very beginning, I’m like, okay, what’s in it for this guy? Like, when’s he gonna come out and be like, okay, now here’s what I need from you.
I. I’ve worked with a lot of people, um, and a lot of people who want to help, including both Tommy and Crystal, who, who do this podcast and all of the things that Federated Media does to have these podcasts. I mean, there, there are a lot of wonderful people in the world who are and are not personally attached to PANS/PANDAS patients, but I just want to say in the presence of all of the listeners, as a mom of a child who has had IVIG who has had to fight the insurance battle twice, pre-claim, um, how much parents, I wish you could know the man that’s speaking beyond just the words and the, the intelligence and, and the platform that he’s created.
Or you are a wonderful human being with a heart of gold, and I have watched you literally run yourself ragged to the point of, you know, you, you spend all night up helping a family because it’s their deadline. It’s not your deadline, it’s their deadline, and you end up sick for. A couple of days because you, you know, pulled a 36 hour bender, whatever.
I just want parents to know the caliber of man that we have on the phone right now. Um, you have changed lives. I know that one day on judgment day you will be rewarded because you’ve done it all just in the name of doing the right thing. And I don’t think there are words that our community can speak to you that, that don’t fall short.
But thank you for, for being the human being that you are, that cares so deeply to, to say we did not want to start this company. We knew we had to. I just think about how, for me, you know, seven years ago when my son was diagnosed with this, it felt so lonely. There were far fewer resources. Diana Pullman was my saving grace.
A couple friends were saving graces. And I just think when you’re talking about your timeline, about how. You know, I, I’m, I’m a Christian, and so I, I think how God had this man in California who was thinking of the things that were bothering this mom and keeping me awake at night in Indiana and how our paths have dovetailed to where you, you are helping people who feel very alone right now, and how this has all been in the works for many years in your, in your brain.
So thank you. But parents, just, just know the man we’re dealing with here. This is one of the blessings, one of the silver linings of PANDAS. And, and you, Warris are my story of hope.
Warris: That’s really, really sweet of you to say. Yeah. Um, I hope I continue to live up to it and I don’t. Know what the point of any of it is if you can’t really make things better for the people around you.
And that’s been kind of a guiding principle of, uh, how I’ve chosen to live my life. I think you just have to try and make the world just a tiny bit better. I I, I really think if you can, if you can do that, then you’ve succeeded. Everything else is optional.
Lindsey: Yeah. Well, I’m not patronizing you. You have, so I’d say mission accomplished.
I, and, and it’s incredible.
Krystal: Thank you. Uh, thank you for all of the work pleasure that you’re doing, Morris. It’s, it’s incredible. Uh, I just wanna echo what Lindsay said ’cause it truly is remarkable. Um, and I know that we covered a lot today, and it’s only a fraction of the things that you’re doing, and you are helping families beyond just who are dealing with PANS/PANDAS.
It’s, it’s remarkable. Um, and just for the sake of doing it, just for the sake of, of making the world a better place. Listeners, we are looking for more stories of hope to share at the end of each of our episodes, and we would like you to share yours. It could be a fun anecdote, it could be a short story about something that your family got to experience that maybe you haven’t been able to experience for a long time.
Whatever it is, please email it to PANDAS@federatedmedia.com and we will read it in a future episode. You can type it out in the email or you can record a short 60 to 92nd audio clip and email that to us and we will share it in a future episode. Thanks for having me on.
Krystal: Yep, absolutely. Thank you for your time.
Um, thank you for, for sharing your insights with us. I think this is invaluable information. Lindsay, thank you for your time. As always, thanks for having me. Your insight, your expertise as a parent. Um, we could not do this podcast without having a parent on to help guide your, your perspective is.
Absolutely invaluable. It’s a pleasure. Thank you. And thank you to our listeners for spending time with us today. And if you found this episode valuable, please leave us a rating and review on your favorite podcast app. It’s the best way to help other families find this information because it improves how when they’re searching for it in the middle of the night on Google, it makes it pop up faster for them.
Um, if you know that somebody else is going through the insurance appeal process, share this episode with them and share the show notes. We will have so much in the show notes, all of these resources from finding a doctor to getting access to Claimable. Um, everything that you need will be in there to help you.
I’m Krystal Vivian. We’ll be back soon with more interviews and conversations on the next episode of Flying Through Fog.
RESOURCES
Surviving The Flares: An Emotional Toolkit For PANS/PANDAS Caregivers — Available wherever you listen to podcasts
Aspire PANS PANDAS Advocacy, Community & Support
Neuroimmune Foundation | Inflammatory Brain Conditions
Parenting Resources:
