WMH Season 4 Ep 7: What Insurance Doesn’t Want You to Know About Mental Health Care

This is a transcript of Watching Mental Health Season 4, Episode 7 which you can watch and listen to here:

Katie: My name is Katie Waechter. I am the host of Watching Mental Health, and thank you to all of our listeners today. So Joe Feldman is a mental health advocate and he is the President of Cover Mind Mental Health.

It's a nonprofit providing individuals and actionable tools towards overcoming insurance obstacles to mental health and substance use. So I think this is something that we've all dealt with those insurance barriers. He was a lead author of a 2021 article in the Journal of Psychiatric Practice on medical necessity letters. And he's given presentations across the country to clinicians, advocacy groups, parents and community groups, all towards improving access to mental health and substance use disorder care, and really access to insurance. And on this episode, that's what we're going to be talking about. We're talking about access to mental health care, overcoming the insurance obstacles that are stopping people from getting the care that they need. And I think this is such a timely topic because this is the beginning of the year. This is the time of year that everyone hates insurance, right? As we go through and see our prices raised, and probably some of our services reduced depending on what boat we're in or what circumstance we're dealing with. And so I know that Americans across the country are dealing with it. So with that, welcome to the show, Joe. I think it's such an important topic, and thank you for being here.

Joe: Well, thanks for having me, Katie. It's indeed a really important topic, and I wish it was just at the beginning of the year when people found frustration with insurance companies. I think it's probably a year round activity.

Katie: Yeah, no, you're absolutely right. I think so too. And it's constantly evolving and changing, and every state seems to have different rules, and I think it's just confusing for so many people. But before we jump into that, I want to just first start off with asking what I always like to ask my guests first, which is just to tell us a little bit more about who you are in your words and why this work really matters to you. Why are you doing this work?

Joe: Well, so first and foremost, I'm a father of two kids, both adult kids who have had their challenges with mental health and substance use disorders, and they're both doing just fine, but along the way they've needed care. And both of them have faced the issue of having an insurance company say that care is not medically necessary and we're not going to pay for it. And it was that surprise when it happened the first time that got me involved in advocacy because no parent, no family member, no individual should have an insurance company standing in the way of necessary care. So I've been involved in advocacy since probably a few months after we got that first letter that said, we're not going to pay for the care. I knew they were wrong, and I knew that I needed to do something about it. And so that's why I'm involved in this work.

Katie: Wow. It must have been a surprise, and I think it probably is when we get that denial letter and we're told that either we can't take medication that we've been prescribed or we can't follow through on a care treatment plan that our doctor wants us to follow through on. And oftentimes people are left not knowing what to do. So they're left really maybe being turned away from care because they can't get access, they can't afford it. So when that kind of stuff happens, it's like, what do you do? And it sounds like you really took that and were like, I'm going to do something here. I'm going to be an advocate and I'm going to find a way. So what did you do?

Joe: Well, so your description of the discouragement that people face is exactly right. I've described this as an insurance company's strategy or approach that's basically, we'll wait you out because people get discouraged. They're trying to live their lives, they're facing an issue for themselves or a family member, and they really don't know what to do. So when I started covering my mental health two years ago, the goal was to provide patients and their families and clinicians with resources that they could use immediately to overcome insurance obstacles. So what we have come to learn is that the paths that are available to you, if you were to read your insurance policy, they're not the best to start. If you look at your health insurance policy, it'll tell you if you have a dispute with us of some kind or you don't think we got it right, file an appeal.

An appeal is a legal process that takes way too much time. It's a process that fundamentally favors the insurance company, and it's not something that most people do. Most people don't even know that that's really an action that they can take. What cover my mental health does is provide resources, and I like to think encouragement that people could get started immediately in a very common sense based way, overcoming the obstacles that insurance companies put in the way. So the obstacles that we think about and our resources support include when you can't find a clinician in your network who has the right competence and is available to you sometime soon and somewhere near you, that's a common issue. Another is denials that the care is not medically necessary, like the one that we encountered for both of our kids at different times that can show up with prior authorizations that are just not happening quickly, or an insurance company that says, we're not going to pay for that med, but why don't you try a different medication, something like that. Those are just very common sense based obstacles that we try to help people overcome with resources. I like to say, can even the playing field with an insurance company.

Katie: Yeah, yeah, absolutely. That's really cool because an appeal takes, not only is it a difficult legal process, but it takes months and people, they need their care, right? They're trying to get a medication, they need that medication now, not in 3, 4, 5, 6 months when they get an answer on their appeal. And so I think it's really disheartening for people. They feel like they can't even get the care that they deserve and that their doctors recommended. And so what are some of those tools? In my bio, I mentioned that you did a medical necessity letter. So talk to me about that and what are some of those other tools that you tell people about?

Joe: Sure. So let's talk about first the expectation that someone has of their health insurance, and this is the expectation that they have if they would think about it, which for the most part they don't because for the most part, health insurance works. What we know though is that for mental health and substance use disorder, it works less well all the time. The whole idea of a medical necessity letter is for a clinician to document that they are competent, they're trained, and they have had an interaction with a patient that leads them to a particular course of treatment. It's really in writing a kind of conversation that a clinician would have with an insurance company. They would introduce themselves, they would talk about their work, their training, and what medication is appropriate or what level of care or what frequency of care is appropriate. And then they would sign it, put it on letterhead, and provide it to the insurance company.

And the idea is for a clinician to essentially put a marker down that says, I've got this. This is my area of expertise, and I'm the one who's working with the patient, and this is the care that is medically necessary, it's the care that's based on the standard of care that I've learned and that I practice all the time. It's a really important tool. And for insurance companies who might send out a notice that says the care is not medically necessary, it provides a much more robust description of the clinician's decision that yes, this care is in fact medically necessary,

Katie: And that's really important and also seems like it shouldn't be necessary. We should just trust that doctors will say that something is medically necessary, and they don't have to write a letter to the insurance company for them to accept that. But that seems like it's often the case from what you're seeing.

Joe: Well, it's too often the case. We've estimated that between 15 and 22 million mental health claims are denied every year by private insurance companies. It's just too many. Now, what we know is in the way our insurance system works, that insurance companies should reasonably be expected to be concerned that care is appropriate and that there's no fraud in the system and all the rest. Those are reasonable expectations. It's when the insurance company is essentially making a clinical decision or really not listening to the competent physician or clinician where these letters can really make a difference.

Katie: Right. Yeah, that's interesting. And that's exactly what it is, is that they're making a clinical decision when they are not the clinicians. They are not the doctors. They have their own agenda, which often just comes down to profits, I think, in insurance. And maybe they'll look at a medication and say, well, this medication should do the exact same treatment as this medication, but it's cheaper, so we're only going to approve this medication. What's the problem with that? Why is that an issue?

Joe: Well, so when we buy health insurance, we expect that the clinician is going to be able to make a decision about care and to use whatever resources are appropriate, whatever intervention. That could be medication, that could be hospitalization, it could be a frequency of care or an intensity of care. That's what we expect. And if you think about care for heart disease or for cancer or for pregnancy, we expect that the full toolbox of capabilities is going to be available to the clinician who is taking care of us. It's the same thing with mental health and substance use disorder. There was a clinician here in Illinois who had been working with a patient, this clinician happened to be an addiction medicine specialist and was working with this patient and the medication that they were prescribing to this patient, it just was not working for a variety of clinical reasons, some of which were shared with me and some were not.

And this was going on and on, and the patient was not getting the care they need in support of their recovery. So this particular clinician had attended a webinar that I had given at their institution, and so they wrote a medical necessity letter using the template that's on our website. It's free to clinicians, all of our resources are free, and they use that template to write a letter to the insurance company. And it basically explained first of all, that they're competent to make these decisions. They're trained, this is what their practice is. And then they explained the particular clinical circumstances that certain oral medications have been tried, and they'd failed for a number of very specific and not shocking reasons. And so the next logical step based on this clinician's experience was to provide a long-acting injectable that would get the job done. And the insurance company got this letter, and only on receipt of this letter agreed that would be an appropriate step.

Absent the letter, it's not clear how quickly that approval would've come through. So here's a clinician who is busy. The last thing that they want to do is spend a whole lot of time talking to an insurance company on the phone. They probably also don't want to take the time to write a medical necessity letter, but with our template, it makes it far easier to do that, to provide the documentation, and then to be able to have the insurance company get that information in a form that makes sense to them. And in that particular case, they approve the medication and the patient was in a position then to get the care they needed and covered by insurance.

Katie: Wow, that's so impressive. And I love that you have that template because I think often what we're missing when we go into these kind of battles with the insurance company is that we want to be playing their game. We need to be talking in their language so that they can take that and run with it. And I think that's true with a lot of insurance companies is you need to speak in the language that they understand in order for you to get some movement on something. And it seems like your business, your organization has really taken root in this. So tell me more about your organization. It's really cool that you have these free resources for clinicians. It sounds like you also have free resources for families that are struggling too. So tell me more about it.

Joe: Sure. So our focus at the end of the day really is patients and families. We want to help patients and families to overcome insurance obstacles. When we talk to clinicians and provide resources to them, it's all in the service of help the clinicians help their patients. Some of the resources are more readily used by clinicians like medical necessity letters. Now, we also have on the website information where patients and their families can learn about a medical necessity letter and be able to share with their clinician that here's a resource that you can use to help me help myself.

You can use this template to provide a letter that I can provide to my insurance company. It's a team effort. And we also have the article that you mentioned in the introduction that a clinician who may not be familiar with these medical necessity letters can receive from their patient to see. Yep. This is a real thing. We wrote about it in the journalist psychiatric practice. It's described in a credible publication that clinicians care about. Another issue that is more focused on patients themselves is when you can't find a clinician in your network who has the right competence and is offering appointments. There's been a lot written about so-called Ghost networks,

Katie: Ghost lists. Yeah, I was going to ask you

Joe: Where you go to the directory, and it turns out this, there's a whole list, but they're all nothing. It's all nothing. They're not taking new patients, or they have appointments available in a year, or they never were in the network, or actually they're not an expert in a particular need that you have.

Katie: They don't even exist anymore. They retired three years ago. It's weird stuff. Yeah,

Joe: Yeah. It's challenging. And so what we offer, again, first is encouragement, that your expectation of being able to find a clinician in the directory is completely reasonable. And we have a worksheet that can be downloaded and used to document the homework that you or a family member has done to look in the directory and try to find a clinician. And so in one place is a very, I'll say, obvious sort of checklist of I tried to call clinician A and it turned out no one answered the phone. And I called clinician B, and they're no longer in network, and clinician C retired and clinician D, some other reason to then be able to go back to the insurance company and say, so I did my part. So it is my responsibility to use the directory to try to find a clinician who is available to help me. And I have struck out, and so now I need your help. So please either find me a clinician who I, for whatever reason, haven't been able to find yet or agree to cover a clinician who might not be in the network at the same rate as if they were. So again, it's a very common sense sort of approach. And although appeals are available when you have a denied claim, appeals are not a process that's suitable when you can't even get an appointment. So it's not a process that lends itself to this particular obstacle that might be standing in the way of your care.

Katie: Right, absolutely. And I've experienced that firsthand is the ghost list. And so let's talk about parity laws. So someone from the outside who maybe doesn't have themselves or a family member who's struggling, they may say, well, the insurance companies say they cover this stuff. Parody laws exist. And so for anyone who's maybe listening to us and don't know what parody laws are, let's talk, what are parody laws and why is it still a problem? Because I know organizations are still fighting for parody laws because families and patients are still struggling with ghost lists. We're still not getting the same access that we should be getting on mental health that we get on the physical side of things. And so people are like, oh, it's great, but it's not. So let's talk about that.

Joe: Sure. So the parity law that is most often talked about is a federal law from 2008 that specified that if mental health claims are offered, they need to be on the same basis as how claims are handled for physical surgical medical care. And I think the parity law from 2008 accomplished a lot. So it's not been a complete bust for sure. I think it has done quite a lot to deal with certain, I'll say more straightforward issues like limitations on the number of visits that someone could have to a clinician. So those issues are far less prevalent than they used to be. The law also changed expectations, and I give a lot of credit to the law for doing that. It changed the expectation from maybe I'm going to be covered and maybe I'm not too, I really should be covered. Now, why has the law not completely lived up to its vision? So as I said, it's a comparative law. It says mental health should be covered on the same basis as comparable medical or surgical care. So here's where it gets a little bit fuzzy

Because what is comparable to, for example, an intensive outpatient program for eating disorders? What's the comparable care on the medical side or the surgical side? So the answer is hard to know. It sort of depends. And so there's enough gray in the system that an insurance company can say, we're trying to make the right comparison, but it's not necessarily easy. And so that's why we're very careful to ask questions about whether the care is actually medically necessary or not, and then we're going to be able to make a decision about whether we're going to cover it. So it becomes too easy for an insurance company to say, we're going to deny the claim. But we looked into it and we went through the same sort of evaluation process to determine if the care was medically necessary or not. And from the perspective of someone who says, Hey, there's law, doesn't the law work? The answer falls into this gray area. And there's a lot of state laws that have learned from the federal law. That's another plus where many states have enacted laws that I'll say fill in the gaps to try to get after some of the places where the federal law didn't accomplish everything because the comparison was too hard or there was too much wiggle room. And so states have tried to pass laws and then regulations and then enforcement to try to get the job done, but it's still not quite what it needs to be.

Katie: Yeah, yeah, yeah. That's interesting. And you're absolutely right. I think it's a gray kind of law in that comparative area is the subjective in some ways. And it's also a gray area of treatment. We're in a place right now with mental health care where it does feel very gray, where people are kind of like, I'll do this or I'll do that. And we have people saying they want evidence-based, and we have other people going all holistic. And it's really a challenge. I think even for providers, it's such a kind of a gray area, and then the insurance really takes advantage of that. But I like what you're saying is that it's a good first step and we want to take that first step and keep running with it.

Joe: And the whole goal of cover my mental health is to provide resources that can be used today, and that don't depend on the full parody law in all its glory and potential.

Because what we expect is care is going to be covered if it's medically necessary, care is going to be available to us from a clinician who is competent. Those are all parts of an insurance policy, which is a contract, and the insurance company needs to hold up their end of the contract and the resources that we provide. They're not legalistic. So I'm not a lawyer and we're not providing legal advice, but they're just common sense tools to be able to say to an insurance company, your contract with me says that you're going to cover medically necessary care, and my care is medically necessary. Here's a letter from my clinician and let's get on with it.

Katie: Yeah, yeah, absolutely. Again, it's that language that they need, and you're giving those tools to provide that language to them. And I think that it's so valuable as people continue to battle insurance companies and coverage. As we keep going, different states are taking different forms of action. And so I thought it was interesting you brought up states before here in Nevada, it's been a struggle. We're moving to a managed care state. I don't know if that's going to make it better or worse in some ways. And it seems like it's still just kind of very confusing for a lot of people in various states.

Joe: Certainly the current environment with changes in the Affordable Care Act credits are just making things more and more complicated. It's certainly the case that cover my mental health is going to make a difference in certain scenarios, but there's an awful lot going on at the level of federal legislation and regulation that just makes the environment quite challenging. And there's a lot of creativity going on at the state level, but it's a pretty challenging environment.

Katie: Yeah, it's challenging, but yeah, that creativity is there. The people who are working are still working, right, as advocates are still advocating. And so with that, what would be next steps as far as advocating for better coverage for insurance companies, so that way we don't have to worry about these things? What are you doing next? What should advocates be doing next? What are some next steps we can take?

Joe: Sure. So the focus of covering my mental health is really to help people at the moment of an insurance crisis. So they can't find a clinician. They are facing a denial of care and to be able to provide evidence that they've done their job, their expectations are reasonable, and the insurance company needs to agree to coverage or some plan that gets the individual the care that they've paid for. So we mentioned deserved earlier, so deserved because they paid for it.

From a systemic standpoint, there are a couple things that we're doing. One is these medical necessity letters can have a systemic benefit. So let me tell you a story that's so encouraging. So a psychiatrist here in Chicago who I've collaborated with quite a lot, has used our templates to provide medical necessity letters to patients so that they can get the care that they paid for because she's documented that this is the right care. And she's told me that with certain insurance companies, now that she's been using these medical necessity letters, she's getting less pushback. And I think that's a really interesting phenomenon,

And I believe that that is going to have a benefit. As more and more clinicians use these resources, insurance companies will see. We can't just stand in the way of care and expect that it's going to carry the day. People are going to say, wait a second, this care is medically necessary. I think that's a really important step. The other is from time to time, we've had the invitation to speak to legislators and regulators about our observations about what's standing in the way of care. So last spring, I was invited to testify in Connecticut in support of, at that point, some pending legislation. It later passed that related to insurance companies needing to disclose publicly the standards that they were using to make medical necessity decisions. So that's sort of right up our alley, and we could bring something valuable to bear. So that's something that is, I think, really important for us to be able to do. I think broadly speaking, there are so many different situations, different states where the regulations and the laws vary. But the one common theme that I encourage advocates to think about is storytelling, telling the story of what happened to them and how they either were successful navigating the system, or ultimately were unsuccessful. And sharing that story or those stories with national advocacy organizations, with their elected officials, possibly with journalists who are writing about

This topic, stories matter. And that's something that all of us who are involved in advocacy can do.

Katie: Yeah, yeah, that's so true. Yeah. Stories are so, so important. They make what we're saying real, right? This isn't just stats. This isn't just numbers. These are real people who paid for care and they deserve to get that care. And so I think this is such a valuable topic, and for anyone who's listening and really does need help and find themselves in a constant battle with their insurance company, please check out Joe's organization, cover My Mental Health, and be that advocate. You are strong. It just takes continuing to show up because the insurance are in it for the long game, like you said, and as long as we're there sticking it out, we can keep doing this work.

Joe: Right? So the website is covermymentalhealth.org. We also have on the website contact @covermymentalhealth.com, where people can reach out with any questions or ideas that they have for ways that our resources might be helpful to them in a better way, or to share stories with us about situations they've encountered where maybe we can provide some additional resources. We are always looking for ways to make a difference to someone in the tradition I grew up in, we say, if you save one life, you've saved the world. And I really like to think that everyone who's listening now knows someone, a family member, a neighbor, a coworker who might benefit from these resources, and please share our website with them and give them the encouragement that you don't have to take no for an answer.

Katie: Yeah. Fabulous. Thank you so much. That's such a powerful, I think, way to end our episode and just to give people and that empowerment that you can, and we're here to support and your organization is so essential. I think it's so niche because you've experienced it, right? You have that story, and I think it's just such a powerful time to know that this organization exists. And so I'm really glad that you came on.

Joe: Well, Katie, thanks so much for having me. And it's really just such an important resource for people to have to get the care they need.

Katie: It really is. And so thank you again for your time, and thank you to everyone who's listening. We're live every first and third Wednesday, but you can catch this episode, share it with all of the people that you know who may be struggling, who maybe know somebody, and all of my episodes at katierosewaechter.com. And with that, we will see you again in a couple of weeks. Thanks again, Joe, and have a great day everyone!

Joe: Thanks very much!