Podcast - MS Healthcare Barriers: What Your Neurologist & Insurance Won't Tell You About SPMS & Physical Therapy
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[00:00:00] Intro to the episode
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Hello, and thank you for tuning in today as we are starting at 2025, I have been having some thoughts on the healthcare system as it relates to multiple sclerosis and specifically some of these new drugs that are coming out for remyelination and just other therapies. And I've been seeing some gaps in the healthcare system and with medications and diagnosis, and they've been on my mind for a few months now.
And I just thought, why not? share my thoughts with you So this episode is more so me just sharing what's been on my mind as I continuously hear of new medications and therapies that are up and coming and really exciting for people with MS. I don't necessarily have answers, but I just want to let you know where my mind is and what I'm going to be on the lookout for this year.
In case you also share similar questions and thoughts and want to keep an eye out as well.
[00:02:06] Thought #1 - specific type of MS that you are diagnosed with how that will translate to what medications are available to you
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The first thought that has been on my mind has been the specific type of MS that you are diagnosed with and how that will translate to what medications are available to you. Especially with all of the clinical trials going on with drugs that might be able to help with remyelination or T cells.
There's so, so many medications that are currently in clinical trial that are being tested for people with relapsing MS or secondary progressive MS or primary. Actually, I don't think there are primary progressive MS, but mostly relapsing and secondary progressive. Maybe some primary, actually. Anyways, up until very recently, the majority, like 95 percent or more, of patients that I work with who have MS, when I ask them, what type of MS do you have, they will tell me relapsing MS or Or they'll tell me a story like, well, my neurologist thinks I started with relapsing, but I actually have secondary, but they're not going to actually put that as my diagnosis because if that's my diagnosis, I won't be eligible for all of the therapies that are available for relapsing MS.
So technically my diagnosis is relapsing MS. Or, they'll say, you know, my, my neurologist does think it might be primary progressive, but just so more medications are available, I'm, I technically have relapsing MS. And I understand this because up until recently, the majority of medications that are available are for relapsing MS.
However, some promising clinical trials that are happening right now that are showing positive results are for secondary progressive MS. And that's it. Thank you. I actually was having this discussion with one of my MSing Link members recently, Amy, and I was asking her, what type of MS do you have?
Because we were talking about, I think it was pipe 307, which I do have a podcast episode on that if you want to learn more about it, but it's one of the clinical trials where we're hoping it will help with remyelination. And We were talking about it and I asked, well, this specific trial is for secondary progressive MS.
So I'm curious, what type of MS do you have? said, supposedly relapsing MS. But when I asked a year ago if mine might have turned to secondary progressive, I was told my center doesn't necessarily diagnose that shift anymore, partly to leave more treatment options open. But that just leaves me with so many questions, like if this medication, if Pipe 307 or any, any medication in clinical trial, if it does get approved and the clinical trial was specifically for people with secondary progressive MS, will all these people who have been diagnosed with relapsing MS be eligible?
My thought. is no. Insurance companies, I don't know, at least here in the U. S., I feel like they don't want to cover things. They're, it's not the best. So if you don't have the specific type of MS that was proven to be helpful in the clinical trial, I just feel like it's very likely that your insurance won't cover it.
Cover these new medications, or maybe you'd have to go back to your neurologist and have it documented that now you do have secondary or progressive MS, whereas before it was relapsing and then it would be covered, but then what if there's other medications that come out that are really effective for remyelination or whatever for relapsing MS, which those are also in clinical trial.
But you've been moved to a secondary MS diagnosis. I don't know. There's just a lot of questions for me here. And I think. Realistically, what should happen is, all of these medications, really, it should be, you should be eligible if you have MS. Like, I totally get that there's clinical trials looking at people who have different types of MS, but.
Maybe I'm incorrect in thinking this, but my thought is yes, there are different types of MS, but if there's a medication that helps one type, it's probably pretty likely that it would help the other types of MS, especially with what we now know about smoldering MS, which I have a podcast episode on that as well.
So, I don't know. I've just got lots of questions on how your specific diagnosis may or may not affect the medications that you're eligible for if a lot of these up and coming medications that are for secondary progressive MS. You know, will, I don't know, will, will that affect you or not? That, that's, that's a gap that I see.
And maybe it is worth having a conversation with your neurologist about, because it is something that, again, at least here in the US and just knowing how our insurance companies work, it's, it's a valid concern, a valid thought, I think.
And if you're curious about those podcast episodes that I mentioned, the podcast episode about the newer medication in clinical trial that could potentially help with remyelination medication, Pipe 307, is MSing Link Podcast, episode number 196. And then the episode on smoldering MS and disease progression is MSing Link Podcast episode number 178.
That is an interview that I did with Dr. Gabriel Pardo. So check those out if you're interested in learning more about those two topics.
[00:08:02] Thought #2 - Access To The Number of Physpical Therapy Visits
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The second thought that has been on my mind is access to number of physical therapy visits. visits. And this has been something that's been on my mind for, gosh, 10 years. Again, I'm mostly speaking to how things are run here in the United States.
I know I have lots of listeners and MSing Link members and audience members from other countries, but here in the U. S., access to the number of physical therapy visits for the majority of people are limited due to what their insurance allows. And it's just this. Arbitrary visit limit. That doesn't take MS.
And the disease process of MS into consideration. There's not the understanding that MS requires ongoing physical therapy visits. If anything, just for maintenance and for the majority of people with MS. Maintenance is desirable. Like that would be great. Like let's, let's just maintain, let's not get any worse when it comes to our physical mobility, but.
Insurance companies, they, again, tend to not, I feel like I'm bashing insurance companies, but they tend to want to just pay for a certain number of visits, like regardless of what your condition is, you get eight covered physical therapy visits, or some insurance companies will give you up to 16. There are a few rare ones.
Where it's a ton, like you might get 80 visits, but for the majority of people that I work with, like 99 percent of the people that I work with, their insurance company only really offers maybe anywhere between eight to 16 visits. And not only that, but it's eight to 16 visits per year. Or per bout of physical therapy.
So regardless, what that means is you're likely taking breaks from PT. It's not ongoing. So you might get an, you know, if it's eight visits, realistically, you're going to physical therapy two or three times a week. So, you could be using up those visits easily, just within one month. So, then your physical therapist has to get a bit strategic and figure out how can we prolong these visits. Do we just do one session per week or do we skip some weeks? Like, how do we make sure we can work together for as long as possible with this limit.
And that's just not how it should be. With, with MS, with a chronic disease, there's so many symptoms that might just kind of pop up out of nowhere. And going to PT and getting a strategy for that can be so helpful. But if you've used up all of your visits and you can't go to your PT, you're kind of left, I don't know, just struggling on your own.
And just to take this from a different perspective, as a physical and I should also preface this by saying, the MSing Link just turned six years old in December, which I'm so, so proud of and so excited for, which means it's been six years since I've worked in an in person physical therapy clinic.
And one reason I was so excited to get out of that. space. It's because of limits like this that we're talking about. But that was just more from the insurance perspective of them being the ones to not allow more visits for people with MS. But it also comes from the side of the physical therapy clinic.
So back when I was in person working with my patients, insurance companies were starting to reward You, clinics and physical therapists for how quickly you could get patients better. And essentially what was going to happen, this was in discussion and to be honest, I'm not sure where it is now. I imagine it's still moved forward, but the discussion was that the, that you would get paid more based on how quickly you got your patients better.
Not only that, but that number, the, the speed that you get patients better would follow you on your in your career. And so employers could see this. And so if they see, Oh, you know, you didn't get patients better as quickly as this other person. We're not going to hire you because the quicker you get patients better, the more we can bring new patients in, and the more people will see.
So, totally financial based, but that number would follow you. And I remember having this discussion with my boss saying, I know for a fact that my number of how quickly I can get patients better is going to be low because that is not my goal. My goal. Is it like, yes, I do want to get my patients better, but better is so arbitrary.
Like what is better? Yes, we have functional outcome measures like the time to 25 foot walk test, the timed up and go, lots of things like that, but just because those tests improve doesn't necessarily mean that you're better and you can leave PT. PT, when you have MS should be ongoing. And that would mean that the longer you see patients with this theory, that you're not getting your patients better because they're still with you.
And so it kind of, as a physical therapist, it hits us from sides, from insurance companies. Not wanting to pay you as much because you're not as good of a PT because your patients aren't getting better as quickly, but also potentially having future employers not choosing you, not hiring you for not getting your patients better fast enough.
So, I mean, if you're. Listening, you can't see, but I'm using a lot of air quotes around like better and like, what does that even mean? So I don't know. This is just another area that I feel like there's a gap. Like when you have MS, there shouldn't be a cap on physical therapy, but for the majority, for 99 percent of the people that I work with, this affects them.
And so they might go to PT, but just for a few weeks or a few months and then stop and then maybe go to PT again later in the year if they have enough visits left. Usually what happens is during that gap where you're not going to PT, they, they worsen because they might not be staying as consistent at home or they just don't know how to translate.
I see this all the time. They don't know how to translate the exercises that they do in the physical therapy clinic. to do them at home, which honestly is one reason why I created my online based physical therapy based program for those gap periods, because we should be doing exercises specific to MS and functional exercise and neuroplasticity year round.
So anyways, this is just one of the other gaps that I've been seeing for a while, but it's, it's becoming more and more apparent. even more clear that this is a real gap that we need to be Considering.
The third gap that I am seeing relates to access to physical therapy for people with MS. And Two things I want to mention about this. Number one, when you have MS, and I don't want to speak for everyone, but the majority of people that I work with energy or lack thereof is real. It is a symptom of MS.
And one reason why I started my online based business and company and physical therapy for people with MS is because time and time again, I had my patients canceling their sessions or no showing because it was just way too much for them to get dressed that day, get out of the house, get to the physical therapy session, then do a 30 to 60 minute session and then drive home.
And then figure out what to do with the rest of their day. Maybe they still have to cook dinner or maybe pick kids up from school. It was just way too much to ask, especially because there are very few physical therapists that are also certified and specialized in multiple sclerosis. So for me personally, the majority of the patients that I was treating with MS were driving from about an hour hour away, if not longer, to work with me.
So let's add that into the fatigue that that's not a great recipe for success here. And so because of that, because of the fatigue and the energy that it takes to do that, they weren't coming to PT or they were, whether it was a canceling or a no show, but let's think about all the other symptoms that come into play as well.
If your mobility isn't great and it's raining outside or snowing, it might not be safe for you to leave your home, to come to a PT session or go anywhere. If your balance isn't great, if it's just a day where you know that This is a day I stay home. This is a day I'm staying on the couch today. That is all valid.
And what if that's the majority of your days? Then that would mean that you're not getting to physical therapy to learn your exercises and to do your exercises with proper form. And so, your symptoms probably, and your mobility, you're Well, either maintain or regress, but definitely not get better because you're not physically able to get there.
And pre COVID telehealth for physical therapy was not really a thing. I specifically remember six years ago, asking my boss for all these patients that I was having with Ms that were canceling or no showing for very valid reasons. I remember telling him, My patients can't get to me for valid reasons.
It's not like they're just blowing me off. Can I go to their homes? Which would have been insane. I understand why they said no. but I did ask, I said, can I go to their homes to treat them at least for the ones that are local? And it was an immediate no. And then I said, can I call them? And they said no.
And I said, can I do a zoom with them? And they said, no, everything was a no. Because at that time, Insurance companies weren't paying for those types of sessions from an outpatient physical therapy clinic, which is the type of clinic you physically have to go to. So I couldn't help because they, they couldn't get to me.
And that is a huge gap, which is one of the main that I started the MSing Link. But a gap here is that physical therapists, now that telehealth is a thing that's so amazing, but physical therapists can only treat you in person or virtually if you live in the same state. that they are in. So I am in New York State.
I have a physical therapy license in New York State. I also have a physical therapy license in Massachusetts and in Maine. However, if someone from California or New Jersey or any other state wanted to work with me, I legally cannot I can't work with them. I can't evaluate, diagnose, treat
[00:19:31] Dogs barking
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anything
because I'm not licensed in those states.
Now, this isn't the same for all health care professionals. I do believe Neurologists can work with you if you're in any state But physical therapy is not that way at least not yet. But there is something called the PT compact and This is where if you are living and licensed in one state, you can apply to be licensed in a different state. So if I live in New York, I can apply to be licensed in Georgia. And oftentimes that does require taking a jurisdiction exam, just so you are aware of any specific things that Georgia has that New York might not have when it comes to health care.
But regardless, you, you take that exam, you pass it. And now I can work with people who are in New York and in Georgia, just as an example, which is amazing because then, especially again, as an MS specialist, there are not that many of us. And so. As an MS specialist who is licensed in multiple states, that just allows me to work with more people that allows you to find a physical therapist who is specialized in your area of interest, which is multiple sclerosis or another neurological or neuromuscular condition.
PT Compact has been rolling out for years, and it has been such a slow process. And unfortunately for me, New York State is not part of the Compact yet. So the way that it works is some states, I think it started with maybe only three states, were available, had the availability to do this.
And over many, many, many years. More states are adding into it. So New York is not part of it yet, meaning I can't yet apply for a license, a physical therapy license, in all these other states. Eventually, who knows how many years it'll be, but eventually I will be able to. So the PT compact is something that is going to be amazing, not just for physical therapists, but for people who have conditions that need to work with a specialist and there isn't a specialist near them.
So I suppose that was a good gap to end on because there is something in the works for this. Which is a very positive sign, but maybe I'm just impatient. It needs to go faster. Let's get accessible care for everyone, regardless of where you live.
[00:22:03] Closing Remarks
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All right, so that's what I've got for you. These are some of the major thoughts that have been on my mind throughout the last six months to ten years, but they're just really prevalent now, I feel. So going into 2025, I'm hoping we can get some answers and some solutions for these, but I just wanted to share my thought process with you.
