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RealTalk MS
Episode 462: Taking Your MS to College? Understand Your Right to Accommodation with Britt Neff
00:30:16
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- [00:01]
A
I'm john strum, and this is real talk, mississippi. It's July 7th, and we have a lot to talk about. The Americans with Disabilities act ensures that people living with disabilities receive reasonable accommodation at their job. That law also applies to students attending most colleges and universities, and the ADA doesn't limit itself to physical disabilities. It's often applied to those invisible disabilities as well. Britt Neff is the Access Specialist at the University of Washington School of Law, and she's joining me in today's episode to explain how the process of accommodation works for college students who living with Ms. But before we get to my conversation with Britt, there are a few other things that you should know about. Over the years, the available disease modifying therapies have done an increasingly good job at pumping the brakes on the immune system to prevent or at least slow down new myelin damage in someone living with Ms. But what about repairing the damage that's already been done because myelin repair or remyelination carries with it the promise of restoring lost function? That question has made remyelination a very hot topic among Ms. Researchers and among people who are living with Ms. Now, the FDA has given the green light to biotech company Phenotherapeutics to start human clinical trials on their experimental oral Remyelination Therapy, PTD802. PTD802 targets a specific protein in the brain called GPR17, which, if you aren't a neurobiologist, might sound more like a droid from Star Wars. So let's break down this protein in plain English and see what makes it a very attractive target to a scientist working on remyelination. Think of the brain of someone living with Ms. Like a construction site, and the job is to repair damaged myelin, that protective coating around your nerves, your central nervous system has a crew of baby cells called oligodendrocyte precursor cells, or OPCs, whose sole job is to grow up, mature, and wrap new insulation, new myelin around those damaged nerves. Everyone starts out with this capability, but that process eventually stops working for people with Ms. Now, GPR17 is a protein that acts like a cellular brake pedal on these baby cells, those OPCs. Under normal conditions, GPR17 tells these cells don't grow up just yet. Wait until we need you. But in an Ms. Brain, because of ongoing inflammation, that GPR17 brake pedal gets stuck to the floor. The baby cells can't mature into the cells that normally repair damage in the central nervous system. In other words, the construction crew stays on the bench and that myelin never gets repaired. What makes this new drug, PTD 802, so unique is that it's an antagonist, which is a fancy science word for a blocker. It steps in and wedges itself under that stuck brake pedal, lifting it up. And by blocking that GPR17 protein, it lets those baby cells finally grow up into mature adult cells that can get to work rebuilding the myelin sheath. That's the theory of how PTD 802 should work. But we shouldn't get ahead of ourselves. This FDA clearance is for a phase one clinical trial. That means scientists are first testing it in healthy volunteers to make sure that it's safe for before they test how well it actually repairs myelin in people living with Ms. It's the very first step on a long road, but it represents a massive leap forward from just managing Ms. Inflammation toward actually healing the central nervous system. You can be sure we'll be tracking this trial closely as the work gets underway. If you'd like to learn more about Phenotherapeutics, the company behind PTD 802, you'll find a link in today's show. Notes. Results of a recently published study provide some reassuring news about a question that I know has caused some anxiety for many of you and honestly for a lot of clinicians too. We're talking about vaccines, specifically the mmr. That's the measles, mumps and rubella vaccine, and the chickenpox vaccine. Both of these are what we call live attenuated vaccines. That means they use a tiny, weakened version of the actual virus to teach your immune system how to fight it. And because they provoke a strong immune response, there's been a long standing worry in the Ms. World about whether a live vaccine could rev up the immune system so much that that it actually triggers an Ms. Relapse. And because of this fear, a lot of people face vaccine hesitancy, especially when they're told they need to get these shots before starting an immunosuppressive disease modifying therapy. Well, a team of researchers in Spain decided to get some hard data. They tracked 369 people with Ms. About a third of them received the MMR or chickenpox vaccine because they weren't yet immune to chickenpox or mumps. While the rest of the study participants had already developed immunity, so they served as a control group. The researchers followed everyone for a full year. Are you ready for the results? There was absolutely no evidence that getting these vaccinations increased the risk of an Ms. Relapse. The numbers were completely stable between the vaccinated and unvaccinated groups. In fact, the researchers took it a step further and looked at MRI scans for a subset of the study participants. They found zero increase in inflammatory activity after the vaccinations. On the MRIs, there were actually fewer signs of active inflammation after the vaccination than before. So what does this mean for you? Well, it means these vaccines do exactly what they're supposed to do. They protect you from dangerous infections without awakening your Ms. The results of this study fully support the current guidelines that say you should get checked and fully immunized against measles and chickenpox before starting a new dmt. So if your neurologist brings this up at your next appointment, you can look at the data and feel confident moving forward. And if you'd like to review that data, you'll find a link in today's show. Notes thanks to the efficacy of newer medications and earlier treatment, people with Ms. Are living longer than ever before. So let's talk about a question that a lot of longtime listeners wonder about as they transition into a new stage of life with Ms. Can I ever stop taking my disease modifying therapy? As we get older, our immune systems naturally change and slow down. This process is called immunosenescence. Because of this, Ms. Relapses generally become much less common after the age of 60. At the same time, the risks associated with disease modifying therapies like serious infection, those risks tend to go up as we age. It leaves a lot of people wondering if the risks of staying on a treatment start to outweigh the benefits. Researchers at the Cleveland Clinic tracked 600 Ms. Patients who were all over the age of 60. About a third of them chose to stay on their DMTs, while the other two thirds stopped taking them, usually in their mid-60s. The research team followed these folks for a median average of 10 and a half years. That's a tremendous amount of data. And here's the big takeaway. Over that entire decade of follow up, only 3.3% of all the patients experienced a relapse after the age of 60. And there was absolutely no statistically significant difference in relapse risk between the people who stayed on their meds and the people who stopped. For the vast majority of older adults, the clinical flares completely quieted down, regardless of their treatment status. But. And yes, there's a but here. The study brought to light an important nuance that shouldn't be ignored. While clinical relapses were incredibly rare, the researchers found that new activity on MRI scans was actually quite common. Roughly a third of the patients in both groups showed new T2 lesions on their routine MRI scans over time. So what does that mean? Honestly, the researchers admit they don't fully know if these new lesions translate into progression or symptoms down the road, or if they're just a byproduct of aging with Ms. Clearly, there is more research required to answer this very important question. But based on the outcome of this study, stopping a DMT after age 60 appears to be safe when it comes to preventing relapses. But it's not a set it and forget it situation. If you and your neurologist decide to transition off your treatment, you'll still need to keep up with regular MRI monitoring to see what's happening under the surface. It's an important conversation starter for your next neurology appointment, especially if you're approaching that 60 plus milestone. In the meantime, if you'd like to review the details of this study, you'll find that link in today's show. Notes we know that cognitive changes things like brain fog, trouble, multitasking or memory slip ups are incredibly common among people living with Ms. But one of the biggest frustrations for both patients and their neurologists has always been the unpredictability. There isn't a reliable way to examine someone early on and say, here is your specific risk for cognitive decline over the next few years. Well, results of a new study might be changing that narrative. A team of researchers in Italy developed a multimodal AI model designed to predict cognitive worsening. Now, multimodal just means the AI doesn't look at only one piece of the puzzle. It digests a whole mix of data collected right at the start. Standard brain MRIs, detailed structural brain measurements, demographic information like age, clinical scores like disability levels, and what we call cognitive reserve, which is essentially the brain's baseline resiliency to damage. They tested this AI model on a group of adults with Ms. Over a span of about 3 and a half years, and the accuracy of this tool was impressive. The AI model was able to correctly predict which patients would experience cognitive decline and which would remain stable in about 90% of the cases. And here's what makes this study a little the researchers didn't just build a black box AI that spits out a prediction without explaining why. They used what are called explainability tools so they could see exactly what data points the AI valued most. And the top indicators the AI used to predict a higher risk of cognitive decline were the loss of volume in the cortical gray matter a person's age, shrinking in specific memory centric regions of the brain called the thalamus and the hippocampus, a higher burden of Ms. Lesions and a lower level of of cognitive reserve. Besides the demonstrated 90% accuracy, what makes this particularly encouraging for the Ms. Community is the shift toward proactive personalized medicine. If a tool like this can be integrated into routine clinical care, it means neurologists could flag high risk patients years before noticeable cognitive decline sets in. That opens a door for early aggressive interventions. Whether that means adjusting a disease modifying therapy, starting targeted cognitive rehabilitation, or focusing heavily on brain healthy lifestyle modifications, it's truly a leap forward in taking the guesswork out of cognitive monitoring. And as AI continues to impact every facet of healthcare, it's a trend we're going to keep a close eye on. If you'd like to review the details of this study, well, you'll find that link in today's show. Notes We've covered some really encouraging news in this episode. From the first human trial of an oral therapy that could repair myelin and restore lost function, to the evidence based safety of important vaccines to AI being able to proactively predict Ms. Related cognitive issues Years before an individual experiences those issues, there's a lot to be excited about. At the same time, people living with Ms. Need to know how to live their best lives and enjoy the best life experiences now. And there probably isn't a life experience that shines brighter than the time someone spends attending college. Of course the classes are important, but so is everything else that's part of the college experience. And if you're a student living with ms, you don't have to miss that experience. In fact, your college experience can be tremendously enhanced by knowing how to ask for the right accommodation. In a moment, my guest, Britt Neff is going to join me to explain exactly what a college student with Ms. Can in the way of accommodation and how to make sure that accommodation is in place by the time classes begin. The Americans with Disabilities act ensures that people living with disabilities receive reasonable accommodation at their job. That law also applies to most colleges and universities, and today Britt Neff, the Access Specialist at the University of Washington School of Law, is joining me to discuss how the process of accommodation works for college students. Welcome to the podcast, Britt.
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B
Thank you so much.
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A
Can you describe your role as an Access specialist and how you interface between the Disability Resources for Students Office and the UW School of Law?
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B
Sure. So my role is to work with students and faculty. So first I'll meet with the Student, we'll have a discussion of the impact of their disability, we'll discuss their documentation, we'll go over accommodations, and then we will discuss what the process is for utilizing those accommodations. All of the accommodations are going to be based on the impact of the disability and whether or not those accommodations actually provide access to the program. But at the same time, I'm also here to answer questions for faculty if they have questions about how to make a particular accommodation. We work in their classroom. I'm here to help them think through that or think through effective alternatives if we really come to a point where they feel an accommodation would fundamentally alter the learning outcomes of their class. So that's my role, is to kind of be the mediator.
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A
Federal law requires colleges to provide reasonable accommodation to students with documented disabilities. What does that term, reasonable accommodation mean?
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B
Yeah, a reasonable accommodation is an adjustment to a program or a class, or sometimes a piece of equipment that would allow or adaptive technology that would allow the student to access the content of the class and effectively demonstrate their knowledge of the material. So that's what an effective accommodation is. It's also a legal term because once we actually put it in place, then the university is required to provide it and or consider effective alternatives to allow the student to participate in the program.
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A
So what are the first steps a student living with Ms. Should take to begin the process of requesting accommodation?
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B
So the first process would be to contact the disability services office and complete an application, typically, and notify the university and the disability office, mainly, specifically the disability office, the need for an accommodation, and then begin that what we call an interactive process, which is to discuss with the student what their needs are, their documentation, and what accommodations might be appropriate based on the program that they're in.
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A
So is there a point in this process where the student living with Ms. Should be discussing their needs with their professors?
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B
I guess my advice would always be to talk with the disability services office and begin that conversation. Students can discuss with their professors their disability as they see fit. The student is never required to disclose the nature of their disability except when discussing it with the disability services office. They're not required to give that information to their professors because it's the job of the disability services office to have that conversation, evaluate the documentation, and discuss the accommodations. I think it is important for students, once the accommodations are set up, to have a conversation with their faculty member about the accommodations and how they might be implemented in their class. And so that's really the important piece of communication, especially when we're talking potentially about Something like a disability related absence. Communication is key because the professor needs to know what to expect to the greatest extent possible because they also need to plan and they have obligations as well to the class as well as to the individual student with a disability. So communication is really, really important.
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A
What specific types of medical documentation are most helpful when a student requests some sort of accommodation?
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B
Yeah, so it's going to vary, it will vary on the disability, but and I would say that for something like ms, information from a healthcare provider regarding the impact of the disability and the duration of any symptoms, if at all known. I know things can change, but we're really looking to accommodate the current impact of the disability. So knowing that and knowing as much information about the symptoms and the functional limitation is a really good place to start. A lot of doctors or healthcare providers will include recommendations and that's helpful and we will certainly take that into consideration as part of the discussion. But it doesn't, just because it's there doesn't mean that it will necessarily be put into place as an accommodation.
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A
How long should it take for a student's request for accommodation to be reviewed?
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B
That actually will depend on the institution, but typically here it's a few weeks. And so the sooner you can get that information or start that process, the better. And that's why I always recommend making sure that even if your current symptoms may not need to be accommodated to get started with the disability services office, it's often quicker to get a follow up than an initial appointment.
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A
Are accommodations limited to the classroom or can they extend to campus housing?
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B
They can certainly extend to campus housing and we'll certainly work with the student to accommodate the various needs, be it handle grab bars on the shower or a roll in shower or a room on the, you know, near, you know, with an elevator, access to an elevator. We'll make sure that we take into consideration all those needs.
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A
Well, you just started answering my very next question. I was hoping you'd provide us with some examples of possible accommodations and the kinds of needs they help address.
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B
So I tend to put accommodations into a couple of categories. So one would be testing. So that would be things like extra time, use of a computer, use of text to speech or voice to text like dictation software or extra time or a quiet location. And then classroom accommodations would be things like, well, it could be textbooks in an audio format or a digital format that can be read by a computer. Could be ability to audio record or use of a scribe if needed. That will vary depending on the need. And then housing so those are kind of the, you know, and that could be grab bars, showers, elevators, things like that. So it really, we really, I really try to cover all of those different areas and make sure that the student is thinking about things they might need in each of these places.
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A
You know, Ms. Is famously unpredictable with different symptoms, flares or relapses that can occur without warning. How does the accommodation process at college account for conditions that are episodic rather than constant?
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B
Episodic can be difficult to kind of prepare for, I guess. But the students that I've worked with, we've thought about what kind of symptoms they've had in the past, how they've been accommodated in the past, what they might need. And so that way if something does occur, then we're ready to kind of spring into action and put them into place and use them. So for example, if mobility is impacted, then we want to make sure that the student is prepared and comfortable. Using a laptop to either type notes or using voice to text in terms of dictating, and if they're not used to it, practicing with technology, because technology can be a great thing. And if the student needs audiobooks or text to speech, you know, getting used to that kind of software or that technology can be a good way to prepare. So I think it's hard if you're not used to using a certain technology or not used to a certain thing. Getting up to speed and doing schoolwork all at the same time. So if there's been an impact in one of these areas in the past, getting comfortable was technology and ways of doing things, even when you're not in the midst of an episode, can be useful so that you can pivot easily when something does occur.
- [25:05]
A
When people first think of accommodation, they often think of physical needs. But Ms. Carries a lot of invisible cognitive symptoms. So are accommodations related to cognitive issues also available?
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B
Absolutely. And that would be things like testing accommodations, extra time, quiet location, ability to audio record, class. If you need to go back and re listen to something, would be something that I would recommend we talk to the student about software that would allow them to record, upload their PowerPoints and take notes all on their laptop in one place. So certainly there are things that we can do even if the disability isn't visible. We work with a number of invisible disabilities, including learning disabilities, ADHD and mental health conditions, and other things like that.
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A
Heat sensitivity is a common Ms. Symptom. Can classroom specific accommodation be made to keep things cool? For a student with ms, that is
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B
a really good question. Housing here I would recommend that the student, well, they could bring in an air conditioner. So that would be one way you can control your living environment. So classrooms obviously are open to the public and they're kind of a big space. So what I would encourage the student to do is think about strategies that they might be able to use as an individual to help manage the environment on their own because it becomes really difficult to accommodate the entire campus on that kind of level. And so if there are personal cooling devices, cooling rags, I've seen students use those that fit personal fans, things like that, make sure that you have ice water, things like that, we can make sure that you're allowed to have those with you in the classroom. But in terms of ensuring that the classroom is at a particular temperature all the time, that would be difficult for us to ensure that that happened.
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A
If a student isn't experiencing any major Ms. Symptoms, should they still register with the disability services office or should they wait until they need some sort of accommodation?
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B
Always do it sooner rather than later. The accommodations really do depend on what's going on or what's current, the current impact. But once you're established, you've let us know and it becomes easier for us to support accommodations that need to be put in place quickly because we already have the information. We know that you know that there's a particular diagnosis. We know that something could potentially be occurring, and that's not the moment you want to be waiting three weeks to see us.
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A
Britt Neff, I want to thank you for all you do to ensure that students living with disabilities at the University of Washington have the best possible college experience. And thanks so much for talking with me today.
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B
Thank you so much. It's been a pleasure that's going to
- [28:18]
A
wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 462. You'll find that link in today's show Notes, so you can easily copy and paste it right into an email or text. When we think about physical exercise, we often think of its physical benefits. But for someone living with ms, the benefits can go far beyond just feeling good physically. Depression affects one in every two people living with ms, and the Mood and Exercise Training Study for Multiple Sclerosis is designed to analyze the effects of two different remotely delivered and monitored exercise training programs for managing major depressive order among people with Ms. Next week. The study's principal investigator, Dr. Robert Mottle, and a woman living with Ms. Who participated in the study both join me to talk about what the experts are learning about the impact of exercise on Ms. Related depression and what the experience of participating in this study was like. I hope you'll plan on joining me for this conversation. I'm John Strum. Thanks for listening. Stay safe and make healthy choices. Sam.