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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
The last few years that I was a rehab manager, I grew very disgusted at our healthcare system and the flaws that it had taking care of patients. Although I did have a voice then, I definitely had a lot to say. I did not have the platform that I have now having being diagnosed with ALS.
Hello everyone and welcome to connecting ALS. I am your host, Jeremy Holden. This week we continue our spotlight on insurance access and affordability on the ways insurers erect barriers to accessing essential healthcare needs and on some of the things that can be done to navigate or even tear down those barriers. Now, one of the more common ways public and private insurers make it difficult to access essential healthcare is through the use of prior authorizations, a process used by health insurers to control costs. While many insurers use prior authorization to some extent, Medicare Advantage Plans have been criticized for using it excessively to the detriment of people living with ALS.
Another tactic insurance companies use is requiring a patient to try a medication or use a piece of equipment that is less effective and fail first before granting approval of the care the physician has prescribed. This is often called step therapy. Now, when care is denied, there are multiple layers of internal and external appeals that can be made, but each of these is time-consuming and has their own challenges. So these barriers mean delayed or denied care for people living with ALS or excessive out-of-pocket expenses. Take the case of durable medical equipment. We know, for example, that people with ALS are increasingly being denied non-invasive ventilators by Medicare Advantage Plan. This adds another layer of torment to an already devastating journey. This is often done by forcing someone living with ALS to try a lower cost ventilation machine and prove that it is not working before gaining access to the equipment they truly need.
It is critically important that insurance understand this. Non-invasive ventilators are not a luxury. They're a lifeline for people living with ALS and it is physicians caring for people with ALS who are in the best position to determine the course of care and the type of respirator their patients need, not insurers authorization and utilization staff. People living with ALS deserve the full benefit of their doctor's experience and expertise, especially when it is focused on supporting their ability to breathe. The ALS Association recently joined the American College of Chest Physicians, also known as Chest, to challenge UnitedHealthcare's practice of delaying and denying medically necessary non-invasive ventilators for patients living with ALS while also notifying insurance regulators about the practice. I recently sat down with Shannon Todd, managing director of care services at the ALS Association about these barriers to essential healthcare for people living with ALS and how to navigate the insurance system. Shannon, thanks so much for being with us this week on connecting ALS.
Thanks for having me.
Oh, you're an important voice to bring into this conversation. As listeners know, we are spending some time this July talking about insurance access and affordability, and from your perspective in the work that you do, what are some of the challenges that you've seen when it comes to accessing insurance coverage for healthcare services?
Yeah. First, I always want to start with the fact that healthcare is a super complex system and I think while we're healthy we don't have to really understand that too much, but unfortunately when we get a disease or an illness and particularly a disease like ALS, we have to get a crash course in insurance in a time where we don't need to or want to and we've got a lot going on. I want to start there because after working with people for 12 years living with this disease and their families, it's very important to recognize that fact, that it's very difficult for them. In terms of accessing healthcare insurance, because we have a complex system, when you enroll in insurance, you get information about out-of-pocket costs and deductibles and premiums, and you have a pharmacy tier level where they pay at different rates and lots of very confusing things.
But then when we actually get into accessing maybe some more costly things or treatments, procedures, equipment, many healthcare insurances have processes in place to make things to review basically, to make things where they feel like they're medically necessary and it's also really a cost saving situation. They want to make sure that they should be paying for it and it's medically necessary. With insurance, many insurances require a prior authorization, and that's a word we use a lot in healthcare, and so that's basically saying that before a physician can order something, they have to get the insurance's approval. So whether that's a prescription or a treatment or a surgery or, like I said, a piece of equipment. So that takes time. That's a step, first step.
And then unfortunately, if that doesn't get approved, there's further steps that we go into. We go into an appeals process with the insurance, and that can be initiated by the person that's insured, the person with ALS or their loved one, but you're going to really need to work with your providers as they're providing the medical information and to say it's necessary to that insurance, and that can take up to 30 days, which is hard, right? We're waiting for treatment.
You mentioned the appeals process. What role do clinicians play in that? What is the role for a patient who's trying to access healthcare? What does that appeals process look like?
Sure. To start with, clinicians play a critical and huge role in this because it's the medical records and their recommendations as well as what they know is best practice for the disease of ALS and its progression. Most likely their nurse case manager will be submitting for prior authorization, and this also involves a lot of administrative work, and if that comes back, then we need to do appeals. And if that comes back, then the physician may actually have to sit into a peer-to-peer meeting with the healthcare insurance's medical director to explain why this treatment is needed. And so I would say it's really important when you're living with ALS to go to an ALS certified or recognized treatment center of excellence or a clinic because these providers and clinicians work with people with ALS all the time. They understand what hoops they may have to go through in order for insurance to pay for things, what documentation is needed in order to get things authorized, and they're the specialists and being with someone that really understands all of this can really hopefully expedite us getting what we need. Not always, but-
Yes, and we can share in the show notes links to ALS focus data about the number of people who have gone through the appeals process and just get frustrated and give up even trying to access the healthcare that they need. Do the challenges become more pronounced? Is it the same regardless of what type of insurance you have? Whether it's from company to company or Medicare versus VA, there's different kind of types of healthcare insurance that people have. Does that come into play in terms of how likely it is that you're going to have to go through prior authorization, fail first, some of these other cost mechanisms?
Yes, definitely, and I spend a lot of time as a social worker working with folks when they became eligible for Medicare, and that's pretty complex in and of itself in that once you become eligible, you have 60 days to choose whether you want to be on traditional fee for service Medicare versus what we call a Medicare Advantage Plan or a Managed Medicare or a Medicare Part C. But again, what happens with Medicare Advantage is it operates underneath the umbrella of a primary insurance, just like if you already had an employer insurance, basically.
Aetna, blue Cross, one of these companies, yeah.
Yeah, exactly. When that happens, you get these things again, this prior authorization and some of those things that come into play with private insurances, and so it is different. Every insurance is different, the VA is different, and so you really have to understand your insurance and that takes time and it takes a lot of work.
Yeah. So what resources are available to help people navigate this? I mean, just understanding the vocabulary can be challenging enough with Medicare Part A, Part B, Part C, prior authorization, fail first. All of these things are terms that we don't use in our day-to-day lives, so even understanding the vocabulary, you could do a graduate school training in that. But what resources are available to help people navigate this system?
Absolutely. I will say to start with, if you have a private insurance or maybe a managed Medicare or Medicaid, they offer case management services. You have to request those, and if you do, you could have a direct line to your insurance versus going through customer service every time and those type of things. So know that. I think that's very important. We've had people be very successful when they actually have a case manager inside their insurance company. The other thing is of course, we at the ALS Association partner with the Patient Advocacy Foundation, and that provides the Medicare Resource Line, and this is a source that provides individual case management for people living with ALS, their families and caregivers. And so it's a free line. You can have direct telephone access and you get experts that can help you navigate eligibility as well as when you're having insurance issues, coverage issues and different burdens that you can be impacted with access to care.
The last thing I would say is really go to your care service folks inside the ALS Association. If you don't know where to start, if this is very overwhelming, which it is for many people, start there. They can help you get in touch with these different organizations, whether it's the Patient Advocacy Foundation or maybe your local state health insurance information program. They're there to help guide you. That's what we do as well as if you're going to one of our clinics, your clinic social worker is another fabulous resource because again, we understand it's overwhelming and sometimes we just don't even know where to start.
You mentioned the people who have been through this before, who have fought these fights, who have gone through the system and can help you navigate it, all of these people are caregivers in their everyday lives, and it strikes me that this is important work and it's part of the process, but it's also taking someone away from being a caregiver, being a professional caregiver, being a nurse, doing the work that we think of them doing in this administrative burden. That's not paid for, right? There's no code in Medicare for the time I spent trying to get through a prior authorization process.
Absolutely not. And I'm so glad you brought that up, Jeremy, because I was thinking this morning of the work that I've done. Early in my days of working for the association, I went into a home of someone living with ALS and their caregiver and their wife, and he was further progressed in his disease and had a lot of needs. She was taking care of everything, ADLs. At that point, he was also needing a lot of breathing support. And I walked in and her kitchen table was full of medical paperwork, it was full of files, and she said to me, "I could be a medical case manager at this point from all that I've learned."
She's having to take away from her day as a caregiver from caring for her loved one, but also doing all this insurance stuff and then to our caregivers, where's the time for them? I mean, they're constantly working on very complex things. And so I will say to your point, sometimes our caregivers come away and they feel like they know more than a lot of general people know or even sometimes medical professionals know about ALS and insurance.
Yeah, no question about that. You mentioned breathing support and earlier you talked about durable medical equipment being part of this process as well, and I've been hearing a lot recently about noninvasive ventilators and some of the challenges that people have in getting access to noninvasive ventilators. What can you tell us about the struggle, the fight that's happening there?
Yeah. For me personally, we work with our clinics in our areas and one of our pulmonologists out of our St Louis areas had contacted us about just really the challenges she was having in particular with private insurance, which she was pretty used to, but now she was seeing it with Medicare Advantage Plans in order to access home ventilators for people. And there's a lot of complexity around different breathing devices that are out there, but what was happening is she was having to appeal an appeal, and then we had people that were already on devices that those insurances were doing six-month reviews and denying them. These are people that are already dependent on this type of support, and so she was having to work very closely with medical directors and the DMEs to make sure that we could get those payments insured for people that were needing those devices.
And again, this is people's lives, it's their breathing. And she explained she'd gone into some peer-to-peer interviews with medical directors, and these medical directors aren't ALS specialists, they aren't ALS pulmonologists. And so they have more of a general knowledge and are just looking at what maybe is given to them or what they know on a database. And she was not very successful. One recommended a device that was recalled and she had to provide education and the other one just would not listen to... She's only prescribing these type of machines for people that meet the Medicare qualifications for them, and they were still being denied. So just very challenging when, again, this is a person's life and the specialist that treats this all the time should be able to make that recommendation for people.
Is there any hope to be drawn from the recent win for the community in seat elevation? Right, so Medicare changed some of its coding rules around seat elevation and power chairs deeming that to be a medically necessary device, a medically necessary piece of equipment. So these policies can change. So does that inspire any hope that maybe at some point in the future this NIV fight will be behind us and we will have shifted the paradigm throughout the industry?
Absolutely. First off, we know the ALS community's voice is so strong and has brought so much change and it is their voice, it is their advocacy. And so yes, I absolutely think we're already working... Our advocacy team is already working to try to write... Written letters to some insurance companies with some other medical entities saying this is what needs to happen for ALS, people living with ALS and their noninvasive coverage and this is best practice. So absolutely, I think there's lots of hope. There's lots of hope, and that's just where I'll leave it because this community is so powerful and the association has a very strong advocacy team both at the state and federal level.
Yeah, I do like to leave it on that note of hope. Shannon, thanks so much for your time this week.
You're very welcome. Thanks for having me.
As listeners probably recall, the ALS community recently scored a big win when Medicare added power seat elevation systems and power wheelchairs as a benefit for disabled individuals including people living with ALS. In doing so, Medicare deemed the technology to be medically necessary. Unfortunately, the fight for insurance coverage is far from over. A few weeks ago we had the privilege to talk with Katie Adams. Katie is an advocate living with ALS in Kentucky who has been fighting for insurance coverage for her power wheelchair since November. But even though lawmakers in Kentucky did expand access to Medicare Advantage, coverage commonly known as Medicap, Katie is still fighting for insurance coverage for her chair. She recently spoke with connecting ALS about her continued struggle with her insurer. Katie, thanks again for being with us here on Connecting ALS.
Thank you for having me. I'm glad to be here.
Yeah, wish we didn't have to have you back to tell the continuation of your story, but to catch listeners up who may have missed the last episode where you were on your fight for access to a power wheelchair continues, last time you were on the show, you talked about that fight. Can you update us on where things stand?
Yeah, of course. So like you said, a few days after I testified in Frankfurt, Kentucky, the company that fitted me for my wheelchair saw my testimony and decided it was best to go ahead and deliver my chair to me and figure out the funding later. So if it were not for them taking that step, I still would not have my power wheelchair that I was fitted for in November of last year. So I filed an appeal for their original decision to not pay for any of my wheelchair. I did get a partial overturn on the original appeal with that. I am however still going to owe $8,500 for this wheelchair, and that's after insurance had paid for what they were going to pay for. I was still not happy with that response, so I went ahead and filed a complaint with Maximus and Maximus works for Medicare. They review the claims for Medicare and Medicare Advantage Plans. They denied my second appeal.
So now I have requested to have what is called an ALJ hearing and that stands for administrative law judge. So this will be the fight for the items that the insurance does not want to pay for still. I requested a video hearing with the judge so that I can show him the functions that they are denying to pay for and why they are very medically necessary for me and for other persons who need this type of chair.
It may or may not change what I owe on the chair and what insurance will pay, but it will at least begin discussions. This judge will hear, and like I said, the average person and even me being an OT, I did not know the different functions on these specialized wheelchairs. So I think just for him to hear what the functions are for and why they're important for me and other people in my situation will help educate more people and hopefully will overturn decisions in the future. So the fight is not exactly over and I do have my power wheelchair, so I'm very grateful for that. I just have to figure out how I'm going to pay for it.
Yeah. So where is the administrative law judge?
So honestly, I don't even know where they're located, but it's going to be a video hearing. Yeah.
That's down on some of the burden, but still the fact that you're almost a year into this fight and still trying to dot I's and cross T's.
And I really think my conversation with Medicare that we'll talk about in a little bit led to speed up that process for the ALJ hearing because when I did those when I was a rehab manager, I was doing them for five and 10 years back. So they don't usually get scheduled this fast.
Yeah. And we should loop in listeners who may have missed our last conversation together, you have a background in this process. You've been down this road before with insurers and fights for payments and prior authorizations. You have some familiarity with this. Doesn't mean it's any easier to go through it, right?
No, not at all.
You mentioned your advocacy in Washington DC. Tell us a little bit about your experience advocating in front of the centers for Medicare services.
Yeah. So like you just brought up, I was a rehab manager and the last few years that I was a rehab manager, I grew very disgusted at our healthcare system and the flaws that it had taking care of patients. Although I did have a voice then, I definitely had a lot to say. I did not have the platform that I have now having being diagnosed with ALS. So I was very eager to be able to have this opportunity to talk to CMS, to hopefully have them listen to the problems that patients with ALS and even other fatal illnesses face and why the policies that they have set just don't work for us. One of the main things that we discussed, like you mentioned, was the timeframe for prior authorizations and how that doesn't work for an ALS patient.
It cannot take months or even a year before you go through all the processes of the prior authorization and the appeals before you get your equipment. So we spoke with several people that day from Medicare and while I didn't get the exact response I wanted, everyone from the ALS Association said the call went really well. But me being new to advocacy, I liked that yes, immediate yes response and you don't get that. And I didn't expect it, but I think it did open up conversations with Medicare about the Medicare Advantage Plans and it's conversations like this that get the ball rolling on things. I believe they would much rather hear from someone who has ALS and lives the disease day in and day out. So I think that's one of the main reasons why we need more advocates for this community. They need to hear from people who have ALS.
Yeah, it strikes me that the pace of policy change can be agonizingly and frustratingly slow and it's up to the folks doing the advocacy, folks like you, folks on the advocacy team and advocates around the world to not lose hope and continue to just keep inching that ball forward every single day until we get small wins and then find the next fight.
You're exactly right. It takes a long time and like I said, I'm new to it. So I wanted the immediate yes, but they were like, that actually went really well. I was like, okay, good.
That's great. Now you talked about your background going through this bureaucratic red tape as a healthcare professional on the occupational therapy side. Is your perspective different going through the process as a patient, as a person who is in need of the healthcare services?
It has been very different even though like you said, I have dealt with denials and I've dealt with the insurance process, but I have been extremely shocked by the lack of knowledge of the disease process and the needs especially for ALS patients, but even with any other serious diagnosis. In order to make policies about a disease, you have to understand the disease process and the timeframe. For example, when I spoke to Medicare one time, the lady said she knew what ALS was. I told her I was 39 years old, but she kept saying, when you turn 65 you can get this. And I was like, ma'am, I'm not turning 65 years old. So you obviously don't know what ALS is. But a lot of the healthcare policies are just so rigid and they don't take into account the different needs for every different diagnosis.
And like I said, I was always frustrated with this, but medical insurance should not be able to dictate what healthcare we do and do not get. And the timeframes on many of the processes to obtain essential equipment and services is just unrealistic for ALS patients. Like I said, if the wheelchair company hadn't delivered my power wheelchair, I still wouldn't have it. And we're at the end of July here, so it's been a long time. It was ready in January and the pre-authorization process is still not complete because I still owe money for the chair and they're still denying.
And like I said before, insurance companies should not be allowed to practice medicine and that is exactly what they're doing. They are making patients try drugs that are not actually prescribed to them, that are less expensive before they get the drug that the physician actually prescribed them to take. Another topic, they're denying non-invasive ventilators for ALS patients and forcing them to try less effective equipment before allowing them to have the equipment that they really need. And this should not be legal. Our healthcare system is seriously broken and something must be drastically changed.
You touched on this a little bit. You're talking about fail first policy, step therapy, a couple different terms that it goes by, and you mentioned the noninvasive ventilators, but I'm sure listeners have a sense of this, but I'd just be curious to hear from you why step therapy is not appropriate for the community or for the types of assistive technology or therapies that we're talking about for treating ALS and making it livable.
Yeah, for sure. Definitely. It seems obvious to you and I the non-invasive ventilators why they need that specific piece of equipment first and not trying these other things. But even for wheelchairs, like Medicare's policy right now for a mobility device is one every five years. And in that timeframe of an ALS patient, first of all, we may not even make it the full five years to get another device, but we may have needed a walker, a cane, a rollator, a manual wheelchair, a regular power wheelchair, and then a very specialty power wheelchair.
So it seems obvious to us that those policies don't work. And it frustrates me because they say they have physicians that have reviewed my case and they said that they're going to deny the attendant controller because I have use of my hand, which is true right now, but even my nine-year-old daughter realizes that I will not have control of my hand before this is over with. So them saying that they have a physician that reviewed that, I don't believe it, number one, and if they did, I don't know how they can think that is ethical. People need the equipment when they need it.
We talked a little bit last week about ALS focus survey data talking about just the percentage of respondents who have dealt with prior authorizations, who've dealt with step therapy and a number of them, a number of people living with ALS who've just simply decided to give up, that it's not worth the fight. But it strikes me that the amount of time that goes into this that, I don't want to speak for you, but I have to imagine there are a thousand other things you'd rather be doing with that time.
Yes, for sure. Alex has been working with me from the ALS Association and the fact that I said dealing with insurance issues is now my new full-time job stuck out in his head and he is like, it shouldn't be like this, but it is. And I'm doing it not just for me because honestly, a lot of these policies won't change when I need them, but if it helps anybody in the future, then it's a hundred percent worth it. It's giving my life purpose and meaning right now. We need more people to do that.
So to the people who don't have the energy to continue these fights and maybe to the policymakers who can actually do something to reduce some of these barriers, what is your message?
My message is that you and your family are your best advocates. Like I said, physicians may be the experts in all the diseases and illnesses, but you are the expert in the disease that you have. You more than anyone else knows your needs and why you need them. If it's something important to you, then you have to keep fighting with all that you have. And your family, if you don't have the energy, find someone who does to fight for you. And right along with that, policymakers need to talk to and listen to people who have been through the disease and work through the problems that we encounter. I know that healthcare overspending and overcharging has to be changed. However, I don't think ALS is where it needs to change and where they need to be strict in rigid policies. I encourage anyone who is having difficulties to contact their local ALS chapter and discuss the difficulties that they are having.
There may be a way that they can help facilitate change for you and you can help facilitate change just by having that conversation. When I was diagnosed, I didn't know how I was going to help, but I knew I wanted to, but all of this kind of just landed in my lap and then I realized, okay, this is how I can help. Even having this awful disease, I am able to feel validated in my concerns by advocating. I am able to show my daughters that you have to fight for what you deserve and that you can make a difference no matter what you're going through. And like I said earlier, I have gained so much fulfillment in my life right now by advocating for change for people who have this dreadful disease. So if I can do it, you can do it. Just fight for it with all you have.
Katie, keep doing what you're doing and hopefully we can have you back on and we can talk about more successes in your fight to make ALS a livable disease and to further efforts to make better public policies for everyone living with ALS.
Thank you. Thank you for having me.
I want to thank my guests this week, Shannon Todd and Katie Adams. Now you can learn more about Katie by clicking on the link in the show notes and checking out a great feature article on how she and her family are living with ALS. If you like this episode, share it with a friend, and while you're at it, please rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is Citizen Racecar. Post-Production by Alex Brower, production management by Gabrielle Monteking, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.