WEBVTT
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It's October 20th, and we have a lot to talk about.
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I'm in Toronto, Canada, where MS Toronto 2026, the largest MS research conference
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in the world, gets underway tomorrow.
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Somewhere in the neighborhood of 9,000 MS researchers and clinical specialists
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are expected to attend this joint meeting of the America's Committee for Treatment
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and Research in MS and the European Committee for Treatment and Research in MS.
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And I hope you plan on joining us, either in person or online,
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this Friday at 3 p.m. Eastern Time for Patient Community Day.
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This is a great opportunity to hear from some of the top MS experts in the world
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as they share updates from MS Toronto 2026 in plain, easy-to-understand English.
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There's even an opportunity for you to ask questions. There's no charge to participate
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in Patient Community Day, and you can register at ektrumspatientcommunity.eu.
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You'll find that link in today's show notes.
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One of the topics that I know we'll be hearing about at MS Toronto 2026 is CAR-T cell therapy.
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It's a therapy that's currently used to treat certain cancers,
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and there are clinical trials underway to determine whether it's effective in treating MS.
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Last year, we met Jan Janisch-Hanzlik on the podcast.
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Jan was the first MS patient to receive CAR-T cell therapy as part of a clinical
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trial, and Jan took us through what the procedure was like and how she was already
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seeing improvement in several of her MS-related symptoms.
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Today, Jan is back to share a one-year update with us. And before we hear from
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Jan, there are a couple things I want to point out.
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First, as you hear about Jan's experience, please keep in mind that people with
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MS respond differently to any treatment.
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Jan's just one individual, and her response to CAR-T cell therapy won't be what everyone experiences.
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I also want to mention that last month, two major pharmaceutical companies paused
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their CAR-T cell therapy clinical trials after three trial participants with MS died.
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I asked Jan about that, and she has some definite thoughts that she shares during our conversation.
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But before we get to my conversation with Jan JJanisch-Hanzlik ,
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I want to remind you that if you
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live in the United States, we're just two weeks away from Election Day.
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And make no mistake, your health care and future funding for medical and scientific
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research are on the ballot.
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Here's a reality check on the current congressional landscape.
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In the current Congress, one party decided not to extend enhanced tax subsidies
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for millions of Americans who get their health insurance through the online
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health insurance marketplace at healthcare.gov. gov.
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The same party has radically remade Medicaid, reducing funding to every state,
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and raising requirements that can be particularly difficult for someone living
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with a disability to meet.
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The result of all this partisan congressional action has been clear.
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Between 8 and 10 million American men, women, and children have lost their health insurance this year.
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And that's only this year.
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In the current Congress, we saw one party eliminate all funding for the MS Research Program.
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Fortunately, a significant lobbying effort on the part of MS activists and the
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National MS Society brought the MS Research Program back from the dead,
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and 75% of that funding was made available a year later.
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You know, when I initially thought about addressing the upcoming election on
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this podcast, I wanted to maintain a nonpartisan perspective And I realize everything
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I just said doesn't sound nonpartisan.
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The name of this podcast is RealTalk MS,
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and these draconian cuts in funding, this philosophy of relegating people living
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with MS and other chronic illnesses and disabilities to the back of the bus in America,
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well, it's been the exclusive work of one political party, and I'm not going
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to try to spin that any differently, because then I'd be lying to you.
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I'm not here to tell you how to vote or who to vote for, but I will strongly
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suggest that every person living with MS or any chronic illness should vote
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in their own best interest, and I believe that is being nonpartisan.
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If you'd like to arm yourself with information as you get ready to vote,
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I hope you'll make time to watch the video replay of the National MS Society's
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webinar entitled MS Advocacy in Action, What the 2026 Elections Could Mean for
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Healthcare Policy and Access to Care.
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The webinar features Nathaniel Wexel, the healthcare reporter for The Hill,
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and a discussion about the election landscape, the legislative landscape ahead,
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and what the results could mean for people affected by MS.
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And you'll find a link to the YouTube video replay of this webinar in today's show notes.
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I also think it's important for you to drill down to your state,
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your community, to know how your congressional representatives and senators
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have voted on major legislation impacting access to health care over the past two years.
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All you have to do is visit realtalkms.com and check out the Congressional Health
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Care Access Report Card.
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Just click on your state and you'll see exactly how well your congressional
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representatives and senators did when it came to supporting the health care
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issues that affect you and your family.
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It's an easy way to help you make an informed decision when you cast your vote.
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This could be the most consequential election in our country's history,
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and I hope 100% of the Real Talk MS listener community in the United States
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is planning to support the candidates that support them and vote on behalf of
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their own self-interest.
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In CAR-T cell therapy, blood is taken from the patient or a healthy donor,
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much as you would facilitate a blood donation.
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This blood is sent to a lab where the white blood cells, or T-cells,
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are separated out and reprogrammed to carry a receptor designed to fight a particular condition.
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This receptor is known as a chimeric antigen receptor, or CAR.
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Over the course of several weeks in the lab, these fortified T-cells multiply
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until there are millions of them, and then they're reintroduced to the patient
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through an intravenous infusion.
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Jan Janisch-Hanslick was the first MS patient to receive CAR T cell therapy
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as part of a clinical trial,
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and we met Jan last year in episode 424 of Real Talk MS when she gave us a firsthand
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report on how she was responding to this treatment.
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This week, Jan is back with an update on how she's responding one year later,
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and in a moment, we'll welcome Jan Janisch-Hanslick back to the podcast.
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Just over a year ago, Jan Janisch-Hanzlik became the first person in the world
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to receive allogenic CAR-T cell therapy to treat MS.
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This therapy uses T cells from a healthy donor that have been genetically modified
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to target and destroy a protein on the surface of B cells.
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These are the immune cells that trigger MS inflammation.
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Just like stem cell therapy, the theory is that once the B cells have been destroyed,
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after just a single treatment, The immune system will reset itself and behave
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in what we can think of as a more normal, healthy way.
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Last October, we talked with Jan about how she was responding to her treatment.
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If you happen to miss that episode, you can check it out at realtalkms.com slash
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424, and we'll include that link in today's show notes.
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It's been a little over a year since Jan received her CAR-T cell therapy,
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and today she's here to share an update on how she's continuing to respond to
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this experimental therapy.
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Welcome back to the podcast, Jan.
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Thank you. I'm very glad to be here.
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When we last spoke just a few months post-infusion, you were experiencing encouraging progress.
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Now that you've reached the full one-year mark, how are you feeling physically,
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and how does your everyday baseline compare to where you were a year ago?
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So I just reached my 15-month mark here in August, and I feel so much better.
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I feel that my gait has improved. I am not nearly as tired as I used to be.
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My sensation has improved.
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I still walk with the cane outside of the house just for distances,
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just to be on the safe side.
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I can say that there's times I will not bring my cane, but 90% of the time I have it.
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However, I physically feel so much better.
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Not only physically, but I emotionally feel better just because it's really
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improved my self-confidence.
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As I,
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felt better. Just because I felt better doesn't mean I necessarily was doing better.
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So I was really waiting for those results to come out.
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And I have some really some excellent results to share here with you guys.
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I was about to ask what your clinical monitoring looked like. So feel free to share.
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Okay. So I do my testing now every three months.
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And for simplicity's sake, I'm just going to go from day zero,
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the day I received the car tee, to month 15.
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So on day zero, my 25-foot time walk test was 18.9 seconds and 19.0 seconds, both with using a cane.
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And for anyone who is unfamiliar with that.
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Anything around six seconds would be normal for a 25-foot timed walk test.
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So you can see my gait was drastically impaired.
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On the 15-month mark, I had a 25-foot timed walk test of 8.1 seconds and 7.0
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seconds, and both of those were without a cane.
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I've almost improved my walking greater than two times. That's unremarkable.
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The nine-hole peg test for anybody who is not familiar with that,
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a nine-hole peg test is just what it sounds.
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You take a little peg from a little dish and you put it in the hole and you
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have to do that with nine of these pegs and then you take each one out individually
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and they time you both on your right and your left hand.
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And what this type of test does is it checks the upper extremity function and
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the hand dexterity, fine motor coordination of each of your hands.
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And day zero, when I did the CAR T cells, my right hand was at 22.04 seconds.
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My left hand was at 22.44 seconds.
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And here at the 15-month mark, it was 17.8 seconds. in my right hand and in my left hand it was 19.5.
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We're talking it improved by a good five seconds so it really shows that the
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dexterity and fine hand coordination has definitely improved.
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And then the symbol modality test is a test where it's a sheet full of paper
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and it has a bunch of symbols on them.
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And at the top of the page, there's like a grid that shows each symbol identifies with a number.
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So you're giving a certain amount of time and you have to put the number down
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that each symbol correlates with.
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And believe it or not, it really is a frustrating test.
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But my original score was 48, and at month 15, it was 50.
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And anything 30 and above is normal.
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And so my doctors really didn't expect to see much of a change with that because
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I really wasn't having much cognition-type problems.
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And then my EDSS breakdown, my score initially was a 6, which means that you ambulate with the cane.
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Your EDSS score actually has a lot to do with your ambulation.
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So some studies will say that it's not a very concrete tool and others say that
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it is. And in this study, they are using that EDSS.
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And so mine went from a six, which means definitely impaired,
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down to 4.0. So I'm independent with ambulation.
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And to see that type of a change is definitely not something that you would
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normally see in MS. You generally just continue to digress.
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So when you break down those scores, my vision, my visual, the EDSS has different categories.
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There's visual, there's brainstem, pyramidal, cerebellar, sensory,
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bowel and bladder, and cerebral.
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And I'll break down each one of those so it's a little easier to understand.
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So, the pyramidal function, it measures muscle weakness and motor function,
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and common findings with this is leg and arm weakness, butt drop,
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spasticity, difficulty getting up and down stairs, getting in and out of a chair.
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And paralysis.
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And so my pyramidal score at the time of the testing was a four,
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and currently now it is a three.
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And so that's the one test that you really haven't seen much progress on.
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And that really is because I still have a lot of weakness in that right leg.
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I have that right leg foot drop. However, it has improved.
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But according to the score, it still remains a three. Then we have the cerebellar function.
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And that measures coordination and balance. and this two is the other score
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that really didn't change and that was a three and it has remained a three and
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that's just because my balance is still off.
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When I'm walking, I can't get up and walk and talk at the same time.
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Turning corners, I really have to stop and think to turn and that's just because
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I still have quite a bit of poor balance.
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So we'll go into some of the great improvements. My visual field,
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it was a one, and it's now a zero.
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And the things that they're testing with the visual field is any type of vision impairment.
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And interestingly enough, when I went to the eye doctor, who was unaware that
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I was in the study, when she was doing my testing, she said to me that.
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My optic nerve in my left eye had shown some improvement.
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And she was really quite surprised by that. And she said...
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I'm not sure why this is, but when I look at your previous testing,
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there was some damage in that optic nerve and I don't see there's still some
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damage there, she said, but it's not nearly to the extent, it shows improvement.
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And that's when I asked her, I said, are you sure you didn't hear about me?
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I said, I was the one that did CAR-T, it's in the same hospital system.
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She's, oh, that was you? And I said, yes, that was me.
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She said, this explains it. So she actually was going to call the drug company
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and let them know that even though this wasn't something they were necessarily
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testing, but she had seen some improvement in that. So that's quite exciting.
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And then there is the brainstem function, and that assesses your cranial nerve
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function. So double vision, nystagmus, any facial weakness, slurred speech,
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difficulty swallowing, and vertigo.
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And so for my brainstem function, initially, it was a two and it has remained a two.
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However, my double vision only shows up now when I'm extremely tired.
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I had always had double vision. I had to wear glasses because of the double
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vision. I had prisms in my eyeglasses.
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And so those aren't necessary anymore.
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I still have the nystagmus, and that's exactly the reason that I still score
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a 2, is because when they do that test, they still see that little flicker when
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I'm trying to stare at an object.
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Then we have sensory function, and my sensory initially was a 2.
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It's down to a 1, and that just measures any type of altered sensation.
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And so some common findings on that would be numbness and tingling,
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burning sensation, loss of vibration and sense, and neuropathic pain.
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So interestingly enough, I didn't think about this until the beginning of August,
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and this was before my testing was done.
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But I noticed that I was really having a lot more pain in my lower extremities,
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especially when I was going to bed. It just felt like somebody had been standing
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on my feet all day, standing on the tops of them. They were just so sore and they hurt.
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And I could really feel pain that I hadn't felt in years.
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And when I did the testing, the doctor explained that's because my sensation.
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When they did that, I have full sensation now in my lower extremities.
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And so that would be the explanation for that neuropathic pain that I'm feeling.
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So that is the reason that I'm scored at a one, but it's a good one.
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I know pain is never anything good to feel, but when you haven't been able to
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feel pain and now you can feel it, it shows improvement. So I'm actually excited about that.
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And they did start me on medication at night for pain because I'm obviously feeling that pain now.
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To me, the most difficult aspect
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of living with MS is living with the unpredictability of the disease.
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I'm curious, based upon the progress you've made, and some of it is absolutely
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stunning in a good way, has your relationship with the unpredictability of MS changed at all?
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Interesting that you say that. I do have a page on Facebook called MS with Moxie,
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and I just wrote about this same thing.
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And I shared my results and I wanted
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people to know, yes, my results look great, but that's on a good day.
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There's still those bad days and I still have that unpredictability.
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And so before I go in and take these tests, I'll be honest with you,
00:20:04.570 --> 00:20:07.420
I am not doing anything the day before.
00:20:07.570 --> 00:20:10.960
I am not going to be up and on my feet because I want to make sure that when
00:20:10.960 --> 00:20:14.560
I go in there, I'm performing at my best.
00:20:14.870 --> 00:20:18.940
And yes, I still have those very unpredictable days.
00:20:19.170 --> 00:20:24.290
For instance, last weekend, it was a very busy weekend. I had my grandkids over.
00:20:25.130 --> 00:20:30.190
They stayed the night. By Saturday afternoon, I was just exhausted.
00:20:30.530 --> 00:20:35.300
And again, I could tell my double vision is starting to increase.
00:20:35.510 --> 00:20:41.940
My bladder that normally has been doing completely fine now that my symptoms are.
00:20:43.080 --> 00:20:50.060
Coming back because of all of the activity that I did, all of those symptoms do creep back in there.
00:20:50.450 --> 00:20:53.990
I wouldn't say they're nearly to the extent that they were,
00:20:54.560 --> 00:21:00.070
but I would say my walking would not be at the 19 seconds it was,
00:21:00.460 --> 00:21:03.460
but I would guess that my walking would probably be
00:21:03.900 --> 00:21:09.780
at 10 seconds for a 25-foot walk, or if they were doing the nystagmus testing,
00:21:09.780 --> 00:21:11.640
that my nystagmus would be worse.
00:21:11.940 --> 00:21:16.210
I noticed that I have to wear my glasses because I do have the double vision.
00:21:16.210 --> 00:21:17.990
I need to make sure my prisms are on.
00:21:18.370 --> 00:21:21.530
So yes, there still is that unpredictability.
00:21:21.930 --> 00:21:25.880
And it's a very good question. And I want people to be aware that,
00:21:26.910 --> 00:21:31.160
yes, the results do look good, but there are definitely still those days that
00:21:31.160 --> 00:21:34.080
are just as bad as before I had CAR-T.
00:21:34.850 --> 00:21:41.280
Recently, CAR-T cell therapy has been in the news, not for particularly good reasons.
00:21:41.280 --> 00:21:47.650
We heard Novartis was pausing their autoimmune and neurology CAR-T cell therapy
00:21:47.650 --> 00:21:54.870
clinical trials following three patient deaths related to severe hyperinflammatory complications.
00:21:55.560 --> 00:22:01.070
This news was almost immediately followed by voluntary pauses in clinical trials
00:22:01.070 --> 00:22:02.600
by Bristol-Myers Squibb.
00:22:03.270 --> 00:22:06.500
So as a pioneer who took that leap early.
00:22:07.210 --> 00:22:09.940
What's your immediate reaction to this news?
00:22:11.810 --> 00:22:16.070
I was surprised to hear that there were three deaths.
00:22:16.470 --> 00:22:21.510
I will say, when I did this trial, and I remember talking with you about it
00:22:21.510 --> 00:22:25.400
on any advice I have, would I recommend doing this?
00:22:26.110 --> 00:22:32.250
I was aware that there was a death prior to me doing this. And so I really did
00:22:32.250 --> 00:22:37.180
have to take that into large consideration when I did this.
00:22:37.650 --> 00:22:42.120
Now that I'm hearing that there have been three deaths, it worries me.
00:22:42.650 --> 00:22:47.940
It worries me for people who are going to those trials that haven't been paused
00:22:47.940 --> 00:22:50.660
for a while and they're continuing to do it.
00:22:50.890 --> 00:22:57.560
I really hope that everyone is aware of these risks and that they make sure
00:22:57.560 --> 00:23:02.700
that they're making the best choice for them and weigh the benefits over the
00:23:02.700 --> 00:23:04.380
risks because the risks are there.
00:23:04.640 --> 00:23:07.440
As you can see, we're aware of three deaths.
00:23:08.270 --> 00:23:15.370
As these safety signals have emerged, has that changed any of your ongoing monitoring protocols?
00:23:16.340 --> 00:23:20.060
No, I'm still getting monitored every three months.
00:23:20.590 --> 00:23:26.620
And I was talking with my oncologist who was managing all of this.
00:23:26.800 --> 00:23:30.580
They're getting ready to start phase two of this trial.
00:23:31.370 --> 00:23:36.440
In the MS community, CAR-T has been viewed and discussed with enormous hope,
00:23:37.010 --> 00:23:39.290
almost as a potential reset button.
00:23:40.580 --> 00:23:46.590
What's it like to balance your own personal journey and progress with the reality
00:23:46.590 --> 00:23:52.810
that this therapy also carries, as you pointed out, severe, sometimes life-threatening risks?
00:23:53.620 --> 00:23:59.520
It's scary. We just heard about this news within the last couple of weeks.
00:24:00.170 --> 00:24:04.260
And had you asked me a month ago, Jan?
00:24:05.670 --> 00:24:09.520
We could do another round of CAR-T, would you do it?
00:24:09.860 --> 00:24:14.360
I would have jumped in and said, yes, let's do one more. Let's see if it really,
00:24:14.900 --> 00:24:18.260
can completely reset everything that's going on.
00:24:18.690 --> 00:24:22.880
But now hearing these risks, it does give me pause.
00:24:23.360 --> 00:24:30.310
And I really would have to have some really good in-depth conversations with my doctors,
00:24:30.990 --> 00:24:38.920
trying to understand what happened, what went wrong that caused these three people to pass away.
00:24:39.610 --> 00:24:45.980
Was it a diagnosis that hadn't been uncovered or what was it that went wrong?
00:24:45.980 --> 00:24:50.770
I really would want to understand why they had those three deaths before I would
00:24:50.770 --> 00:24:52.080
take this journey again.
00:24:53.520 --> 00:24:58.100
So I think you've actually already started to answer this question.
00:24:58.750 --> 00:25:02.500
But when someone who's been newly diagnosed with MS or someone who's living
00:25:02.500 --> 00:25:08.630
with a particularly aggressive MS disease course reaches out to you and asks
00:25:08.630 --> 00:25:11.050
whether they should try CAR T cell therapy,
00:25:12.420 --> 00:25:14.110
what would be your advice today?
00:25:15.200 --> 00:25:21.070
My advice would be for them to make sure that they're aware of the risks,
00:25:21.280 --> 00:25:24.520
which can include death and has been death.
00:25:24.520 --> 00:25:29.190
We're not just saying that it may happen. We have found that death has been
00:25:29.190 --> 00:25:31.280
a side effect of this treatment.
00:25:31.660 --> 00:25:36.500
I really would suggest that people talk with their family to make sure that
00:25:36.670 --> 00:25:40.240
everyone is aware that there are risks.
00:25:40.440 --> 00:25:43.480
We have seen what these risks have caused other people.
00:25:44.370 --> 00:25:48.760
I would make sure that they talk with their doctor. Have they tried all of the
00:25:48.760 --> 00:25:53.450
disease modifying therapies out there before they take this journey?
00:25:53.450 --> 00:25:57.510
Because really, this is a trial and we don't know what's going to happen.
00:25:57.820 --> 00:26:01.570
And I would just want to make sure that they're aware that risk could happen.
00:26:01.570 --> 00:26:05.900
And I think that they need to make sure that their family, their caregivers,
00:26:05.900 --> 00:26:11.550
their partners, that all of them are aware and that they're willing to take that journey with them.
00:26:11.860 --> 00:26:17.580
Because not only is it just death, but you could actually have brain damage, lifelong brain damage.
00:26:17.580 --> 00:26:23.870
And is your partner willing to take on that risk and be there for you if that should happen?
00:26:23.870 --> 00:26:29.770
So I think it definitely needs to be a joint decision with the caregiver,
00:26:30.040 --> 00:26:32.870
the family members, and their providers.
00:26:34.610 --> 00:26:42.260
I am very happy to hear that this conversation, in terms of your progress, has been so positive.
00:26:42.760 --> 00:26:49.870
It sounds like you're living life at a different level than you were pre-CAR T cell therapy.
00:26:50.500 --> 00:26:55.110
And that thrills me to no end. I want to thank you so much for talking with me today.
00:26:55.610 --> 00:26:59.840
And I hope we can connect again for a year two update.
00:27:00.440 --> 00:27:07.060
I hope so. Yes, I'm really excited to do that. I will just add one more thing about the CAR-T.
00:27:07.400 --> 00:27:10.120
So initially, we had to do a spinal tap.
00:27:11.440 --> 00:27:17.350
And mine showed oligoclonal bands. They did that spinal tap again at three months.
00:27:17.650 --> 00:27:23.460
I don't remember how many bands that I had, but my oligoclonal bands were unchanged.
00:27:23.990 --> 00:27:28.990
They made it an option at the year mark to do the spinal tap again,
00:27:29.220 --> 00:27:30.730
and I went ahead and did it.
00:27:31.020 --> 00:27:34.630
And again, there were no changes in those oligoclonal bands.
00:27:34.630 --> 00:27:39.070
So I found that to be interesting. Maybe some of your listeners might be able
00:27:39.070 --> 00:27:42.730
to chime in as to what their thoughts are on that.
00:27:42.730 --> 00:27:49.090
If they thought maybe the oligoclonal bands would remain the same or decrease,
00:27:49.260 --> 00:27:54.720
I'm not sure, but I think that's a good question for us to think about as we move forward.
00:27:55.650 --> 00:27:58.380
Thank you for giving us one more thing to think about, Jan.
00:27:58.380 --> 00:27:59.520
Always great talking to you.
00:28:00.120 --> 00:28:03.040
Nice talking with you. Thank you so much.
00:28:04.030 --> 00:28:08.650
That's going to wrap up this episode of real talk ms real talk ms is powered
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00:29:12.200 --> 00:29:15.860
The joint meeting of the America's Committee for Treatment and Research in MS
00:29:15.860 --> 00:29:23.280
and the European Committee for Treatment and Research in MS begins this week at MS Toronto 2026.
00:29:23.900 --> 00:29:29.280
Next week on RealTalk MS, some of the top MS experts in the world will be joining
00:29:29.280 --> 00:29:33.080
me to talk about the latest research being presented at this meeting,
00:29:33.510 --> 00:29:39.030
and they'll explain how these discoveries are going to impact your care and treatment.
00:29:39.820 --> 00:29:44.390
I hope you're planning to join me for what are always the most listened to RealTalk
00:29:44.390 --> 00:29:46.250
MS episodes of the year.
00:29:46.970 --> 00:29:49.750
I'm Jon Strum. Thanks for listening.
00:29:50.650 --> 00:29:54.010
Stay safe and make healthy choices.
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