WEBVTT
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It's September 15th, and we have a lot to talk about.
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We're less than 40 days away from the joint meeting of the European Committee
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for Treatment and Research in MS and the Americas Committee for Treatment and Research in MS,
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the joint ECTRIMS-ACTRIMS Scientific Congress, known this year as MS Toronto 2026.
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And while the presentations made during this meeting are high-level scientific
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presentations, ECTRIM's Patient Community Day is tailored specifically not for
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scientists and clinicians, but for people affected by MS.
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Joining us with a special preview of Patient Community Day 2026 are Dr.
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Jennifer Graves and Brett Drummond.
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Dr. Graves is a professor and vice chair of human clinical research and division
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head of neuroimmunology at the University of California, San Diego.
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And my longtime friend, Brett Drummond is the host of the ECTRIMS podcast and
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the voice of ECTRIMS patient community day.
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But before we get to Brett, Dr. Graves, and our preview of patient community
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day, 2026, there are a few other things that you should know about.
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Not only are we less than 40 days away from the joint ECTRIMS-ACTRIMS Scientific
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Congress, we're less than 50 days away from the midterm elections in the United States,
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and unfortunately, health care access and future funding for medical and scientific
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research are very much on the ballot.
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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.
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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 difficult for anyone living with a disability to meet.
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The result of this congressional action has been clear. Between 8 and 10 million
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Americans 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 resulted in 75% of that funding being made available a year
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later, bringing the MS Research Program back from the dead.
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I want to add that in thinking about this segment, I tried to maintain a nonpartisan
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perspective, and I realize everything I just said doesn't sound nonpartisan,
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but the name of this podcast is Real Talk MS.
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And these draconian cuts in funding, this philosophy of relegating people living
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with MS and every other disability to the back of the bus in America,
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it's been the exclusive work of one party, and I'm not going to try to spin
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that any differently because it would be a lie.
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Now, I'm not here to tell you how to vote or who to vote for,
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but I will strongly suggest that every person living with MS or any chronic
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illness should vote in their own best interest.
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And I believe that is being nonpartisan.
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We've had two years to observe and judge the actions, not the rhetoric,
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but the actions of the majority party in Congress and our incumbent congressional lawmakers.
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Now it's our turn, through our vote, to determine whether this country is on the right track or not.
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With less than 50 days until the midterm congressional election,
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we'll have more to say on this subject.
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But 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 their needs and
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vote on behalf of their own self-interest.
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To that end, on September 22nd at 12 p.m.
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Eastern Time, 9 a.m. Pacific, the National MS Society is hosting a webinar entitled
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MS Advocacy in Action, What the 2026 Elections could mean for health care policy and access to care.
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The webinar will feature Nathaniel Weixel, the health care reporter for The Hill,
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and a discussion focused on the election landscape, the legislative landscape
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ahead, and what the results could mean for people affected by MS.
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You can register for the webinar at nmss.quorum.us, that's nmss.quorum.us,
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forward slash event, forward slash 37051.
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You'll find that link in today's show notes. And if the timing of this event
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doesn't happen to fit your schedule, a recording of the webinar will be sent
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to all registered participants following the live event.
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Whether live or afterward, I hope you make time for this webinar.
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A new study provides an unprecedented look at what day-to-day life actually
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feels like for people living with MS, and more importantly, exposes significant
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gaps in how MS symptoms are being managed.
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Led by the European Multiple Sclerosis Platform, the Impact of Multiple Sclerosis
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Symptoms Survey collected patient-reported data from more than 17,000 people
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living with MS across 22 European countries.
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On average, respondents reported living with 13.7 concurrent MS symptoms.
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99% of the survey respondents reported experiencing at least one symptom,
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with the top five most prevalent symptoms identified as fatigue,
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sensory issues, sleep disturbances, cognitive impairment, and balance problems.
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And what makes that list interesting is all but one of the top five most prevalent
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MS symptoms are invisible symptoms.
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And while about 86% of the survey respondents indicated they were on a disease-modifying
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therapy, the survey data reveals an interesting divide between visible and invisible symptoms.
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While respondents were twice as likely to report satisfaction with the management
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of visible physical challenges like mobility, spasticity, and bladder issues,
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only about one in five respondents felt their fatigue, cognitive impairment,
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or sexual dysfunction were well managed.
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On average, survey respondents were being treated by 4.2 different health care
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professionals, but only half reported experiencing coordinated care between
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their providers, and more than a third reported no coordination at all.
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Fewer than a quarter of the survey respondents indicated they were accessing
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health professionals who specialize in non-pharmacological symptom management,
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like occupational therapists, physical therapists, and clinical psychologists.
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This landmark study provides clear evidence for what so many people in the MS
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community express every day.
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Successfully managing MS requires far more than just writing a prescription for a DMT.
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It requires an integrated, multidisciplinary approach that takes invisible symptoms seriously.
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So when you're in front of your healthcare team at your next appointment,
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be sure to bring up all the symptoms that aren't visible during that routine exam.
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Whether it's brain fog, chronic fatigue, changes in sleep, sexual dysfunction, or something else.
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You don't have to navigate these symptoms alone, and calling them out is the
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first step in making occupational therapy or specialized lifestyle support part
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of your overall care plan.
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Now, if you'd like to review the details of this study, you'll find that link in today's show notes.
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Current disease-modifying therapies do an exceptional job of reducing relapses
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and slowing progression.
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But they generally work by broadly depleting large segments of immune cells,
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which increases an individual's risk of infection.
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So, I guess if there's a holy grail in MS research, it might be finding a way
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to stop the immune system from attacking myelin without shutting down or weakening
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the rest of the immune system.
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A newly published paper from researchers at the University of Zurich offers
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an encouraging step toward that goal.
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The paper shares results from an early-stage clinical trial evaluating a new
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cell-based treatment designed to retrain the immune system so it stops attacking
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myelin while leaving the rest of the immune system intact.
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This experimental treatment works by hijacking the body's natural trash collection system.
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Normally, dying red blood cells
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are filtered out naturally by scavenger cells in the liver and spleen.
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These organs are programmed to clear cell debris quietly without triggering an inflammatory alarm.
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In this treatment, the researchers took a sample of a patient's own red blood
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cells, and they attached seven protein fragments from myelin,
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the exact target that malfunctioning immune cells mistakenly attack in MS.
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When the re-engineered red blood cells were re-infused back into the patient,
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these modified cells traveled to the liver and spleen,
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teaching the immune system to recognize those specific myelin fragments as harmless
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tissue rather than foreign invaders that need to be attacked.
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Now, following the reintroduction of the modified red blood cells,
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Biomarker analysis showed a reduction in serum neurofilament light chain,
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which is a key biomarker of ongoing nerve damage and inflammation in the central nervous system.
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Analyzing individual cells, researchers found that just one infusion quieted
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the damaging immune cells for at least three months.
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At the same time, it boosted helpful peacekeeper immune cells and natural calming
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chemicals that actively protect myelin.
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In short, the therapy taught the immune system to call off the attack on myelin,
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and if myelin isn't being attacked, there is no MS.
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The therapy appears to be well-tolerated in people with relapsing-remitting
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MS, there were no serious adverse events linked to the infusions,
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and clinical and MRI readouts remained stable throughout the trial.
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While this was a small, early-phase study, it provides proof of concept for
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targeted immune tolerance.
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Rather than disarming the entire immune system, precision cell therapies like
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this are designed to re-educate the specific cells driving myelin damage,
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paving the way towards safer, targeted MS therapies.
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And if you'd like to review the details of this study, you'll find that link in today's show notes.
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When we look at treatments for MS, almost everything currently available focuses
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on slowing down the immune system to prevent new damage, and that's certainly
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one half of the equation.
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The other half of the equation, actually repairing the damage that's already
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occurred, remains one of the biggest unmet needs in MS care today.
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Now, a research team in Germany is taking a novel approach toward myelin repair,
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and their project just received a $1.3 million grant from a subsidiary of the
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Elsa Kroner Fresenius Foundation to move their concept, a skin patch designed
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to promote myelin repair
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from the laboratory toward human clinical trials.
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The active ingredient in this patch isn't brand new.
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It's theophylline, an inexpensive medication that doctors have prescribed for
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decades to treat respiratory conditions like asthma.
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In the laboratory, the researchers discovered that low doses of theophylline
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activate a specific natural enzyme in our cells called HDAC2.
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When that enzyme gets turned on, it kickstarts the molecular machinery that
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nerve cells need to rebuild damaged myelin.
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In animal studies, this low-dose approach successfully stimulated myelin repair.
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And you might be wondering why people with MS can't just take an asthma pill,
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which is the way theophylline is dispensed today.
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The catch is dosing.
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In asthma treatment, higher amounts of the drug are needed to open up airways.
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But for nerve repair, the brain needs a steady, continuous, much lower dose.
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Working with pharmaceutical technology experts, the research team designed a
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transdermal patch that slowly releases the exact microdose needed through the skin over several days.
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That way, they avoid the sharp peaks and valleys that come with taking a pill.
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It's important to remember that this treatment is still in its early stages.
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This new funding is designed to scale up pharmaceutical-grade manufacturing
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and fund the very first safety trial in healthy volunteers before it can be
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tested in people living with MS.
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Still, this project represents an exciting trend in neurorepair research.
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By taking a well-understood and already approved medication with a known safety profile,
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and engineering a new way to deliver it directly where and how it's needed,
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researchers may be able to shave several years off the typical drug development
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timeline, bringing us one step closer to therapies that not only stop MS,
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but help reverse the damage it leaves behind.
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Cognitive changes and subtle communication issues are common in multiple sclerosis,
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with research showing that up to 75% of people living with MS experience language-related challenges.
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Now, a newly published study suggests that analyzing everyday speech patterns
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could offer a non-invasive, objective method for predicting future brain tissue loss.
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Researchers in the Czech Republic followed 97 people living with MS and 80 healthy
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controls, to see if automated speech analysis could capture subtle cognitive shifts over time,
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and predict long-term brain atrophy.
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Participants were recorded telling a familiar fairy tale of their choice for
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about 90 seconds at the start of the study, and then again two years later.
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Using automated speech recognition and natural language processing software,
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the researchers evaluated specific linguistic patterns, including vocabulary
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diversity and repetition.
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Compared to healthy controls, people with MS showed measurable declines over
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those two years in vocabulary range, meaning they used a narrower set of words than they used to.
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They also noticed an increase in repeated phrases.
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The research team suggests that these shifts reflect subtle difficulties with
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word retrieval, processing speed, and the brain networks responsible for linking
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words with their meanings.
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The researchers followed up with repeated MRI scans for up to five additional
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years, analyzing over 600 scans,
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and they found that early declines in speech, specifically in narrowing vocabulary
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and higher phrase repetition, were significantly associated with subsequent
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gray matter loss in the brain.
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Looking at specific brain regions, reductions in sentence complexity were linked
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to gray matter lost in the cerebral cortex and changes across multiple speech
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metrics correlated with volume loss in the cerebellum,
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and that's a region that's vital for motor coordination, balance,
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and cognitive processing.
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Now, because all the participants in this study were Czech speakers,
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and MRI scanning protocols shifted somewhat over the study's seven-year period,
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larger studies are needed to confirm whether these same linguistic markers translate
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across other languages and diverse patient populations.
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Even so, these study results suggest a better, more patient-friendly way to monitor MS.
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If you've ever gone through a standard cognitive assessment,
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you know they can be time-consuming, expensive, and stressful.
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In the future, automated, cost-effective digital tools, perhaps even an app
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on a smartphone that analyzes a short voice sample, might help clinicians detect
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neurodegeneration earlier.
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And that would allow for more proactive treatment adjustments without placing
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any extra burden on the patient.
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Now, if you'd like to review the details of this study, you'll find a link in today's show notes.
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And whether it's analyzing speech to determine future neurodegeneration or using
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a skin patch to promote remyelination,
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a lot of what we've been talking about in this episode of the podcast is focused
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not only on new research, but on whole new treatment paradigms.
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The rate of scientific discovery is taking place at speeds that have never been seen before.
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And that makes the upcoming joint meeting of the European Committee for Treatment
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and Research in MS and the America's Committee for Treatment and Research in
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MS, or the Joint ECTRMS-ACTRMS meeting, more important than ever to the MS community.
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And that's why Patient Community Day has become such a necessary part of this meeting.
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If you're curious about what this year's Patient Community Day is all about
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and why you may want to participate either in person or online,
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you're going to be interested in what my guests, Dr.
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Jennifer Graves and Brett Drummond, have to say as they give us a preview of
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what we can expect at ECTREM's Patient Community Day 2026.
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We're less than 40 days away from the joint meeting of the European Committee
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for Treatment and Research in MS and the Americas Committee for Treatment and Research in MS,
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the joint ECTRAMS-ACTRAMS Scientific Congress, known this year as MS Toronto 2026.
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And while the presentations made during this meeting are high-level scientific
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presentations, ECTRAMS Patient Community Day is tailored specifically not for
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scientists and clinicians, but for people affected by MS.
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Joining me to give us a special preview of Patient Community Day 2026 are Dr.
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Jennifer Graves and Brett Drummond.
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Dr. Graves is a professor and vice chair of human research and division head
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of neuroimmunology at the University of California, San Diego.
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And my longtime friend, Brett Drummond, is the host of the ECTRAMS podcast and
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the voice of ECTRAMS Patient Community Day.
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Brett, Dr. Graves, welcome to the podcast.
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Thank you. Thanks for having us.
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Thanks for having us, John.
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Brett, Patient Community Day has really become a cornerstone companion to the
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Scientific Congress itself.
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What's the core mission of Patient Community Day and why is holding it alongside
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MS Toronto 2026 important for the broader MS community?
00:20:09.990 --> 00:20:13.400
Yeah, it's a really good question and it's such an important and integral part
00:20:13.780 --> 00:20:19.120
of the conference now. This will be our fifth edition of Patient Community Day
00:20:19.120 --> 00:20:23.440
and our first one in North America, which is particularly exciting for all of us.
00:20:24.190 --> 00:20:28.910
Its mission is really simple. It's to communicate all of the exciting outcomes
00:20:28.910 --> 00:20:34.010
that we hear about at the conference to the people who are most impacted by
00:20:34.010 --> 00:20:35.320
these research developments.
00:20:35.320 --> 00:20:40.500
And that's people living with MS as well as other related neurological conditions.
00:20:41.690 --> 00:20:45.990
I think it's important that it happens alongside the conference because it means
00:20:45.990 --> 00:20:48.420
that we can report on it as soon as we hear it.
00:20:48.850 --> 00:20:53.870
And it also means that we can report on it from people who are directly involved
00:20:54.160 --> 00:20:57.130
in all of these amazing sessions that happen across the four days,
00:20:57.510 --> 00:21:00.780
such as this year, where we're really excited to be joined by Dr.
00:21:00.780 --> 00:21:02.560
Jennifer Graves as one of our panelists.
00:21:04.030 --> 00:21:10.440
Dr. Graves, from a clinician researcher's point of view, why do you think translating
00:21:10.570 --> 00:21:18.340
high-level, sometimes dense academic data into direct dialogue with people living with MS has,
00:21:18.940 --> 00:21:23.550
I don't know, it's felt like it's become a necessary responsibility in modern neurology?
00:21:24.260 --> 00:21:29.710
Yes, I think it's really important for us to be able to communicate what we're
00:21:29.710 --> 00:21:34.820
doing to people with MS and for us to listen to people with MS to make sure what we're doing
00:21:35.310 --> 00:21:39.730
is grounded in delivering benefit for people living with the disease.
00:21:40.140 --> 00:21:43.960
If we can't communicate it well to people living with disease,
00:21:43.960 --> 00:21:48.460
it might mean we're getting off track or if some of our objectives of our research
00:21:48.790 --> 00:21:51.800
are getting too far removed with what our overall objective is,
00:21:51.800 --> 00:21:54.430
which is to improve lives of people living with MS.
00:21:54.810 --> 00:21:59.590
It's also really important for people living with MS to understand some of this
00:21:59.590 --> 00:22:04.340
work and understand why some of our projects and the involvement of patients
00:22:04.760 --> 00:22:06.390
in this research is so important.
00:22:06.390 --> 00:22:09.690
It's important for them to understand our perspective and what we're trying
00:22:09.690 --> 00:22:14.180
to accomplish, and it's important for us to hear whether we're staying on track
00:22:14.180 --> 00:22:18.680
with the most important objectives we can be going after in our research programs for MS.
00:22:19.980 --> 00:22:23.280
I have a question for both of you, and I'll start with you, Dr. Graves.
00:22:23.570 --> 00:22:28.950
For someone who's never attended or tuned in before, what sets Patient Community
00:22:28.950 --> 00:22:34.140
Day apart from just deciding to read some of the headlines or one of the press
00:22:34.140 --> 00:22:37.010
releases that are going to come out of MS Toronto?
00:22:38.440 --> 00:22:43.640
It's an opportunity to engage with some of the researchers for there to be dialogue,
00:22:44.010 --> 00:22:47.210
as opposed to a one-direction communication.
00:22:48.730 --> 00:22:54.000
And Brett, same question. What makes Patient Community Day different from someone
00:22:54.000 --> 00:22:56.360
deciding to read some of the news coming out of the meeting?
00:22:56.980 --> 00:22:59.990
Yeah, I think that it's conversational. I think that's important.
00:22:59.990 --> 00:23:03.890
We're going to discuss it. We're going to delve into it. It's not just a presentation,
00:23:04.510 --> 00:23:08.310
but also it's directly aimed at people living with these conditions.
00:23:08.310 --> 00:23:11.730
So the accessibility of what we're going to be talking about is right.
00:23:11.730 --> 00:23:13.810
It's not going to be coming through with all of the science,
00:23:13.810 --> 00:23:16.500
but it's also coming directly from the people involved. So we make sure that
00:23:16.500 --> 00:23:19.770
what you're hearing is accurate, which is also a really important thing that
00:23:19.770 --> 00:23:24.040
may not always come across in press releases or other things that come out online.
00:23:25.530 --> 00:23:28.270
Brett, as you're hearing the buzz heading into this year's meeting,
00:23:28.790 --> 00:23:33.360
are there any emerging clinical themes or trial readouts that are generating
00:23:33.360 --> 00:23:37.000
the most interest or anticipation among the research community?
00:23:38.210 --> 00:23:43.160
Yeah as always leading into this it's four days of intense science the amount
00:23:43.160 --> 00:23:46.520
of sessions that we have is pretty crazy going across the whole conference so
00:23:46.520 --> 00:23:48.560
there's going to be a lot of things covered across
00:23:48.990 --> 00:23:52.920
a range of different topics in terms of the clinical space I think we're really
00:23:52.920 --> 00:23:57.350
excited to see data that's coming out from the BTKIs we've already seen readouts
00:23:57.350 --> 00:24:02.580
from a couple of them we're expecting a third one to be announced during the late breaking session
00:24:03.010 --> 00:24:04.600
so that that will be a big one.
00:24:04.600 --> 00:24:08.620
We're also expecting updates from another of our existing therapies to see some
00:24:08.620 --> 00:24:12.200
updated data on those. So as always, it really is the place where we expect
00:24:12.200 --> 00:24:13.420
big announcements to be made.
00:24:14.190 --> 00:24:18.020
Dr. Graves, the hot topics and research that we'll be hearing about at the meeting
00:24:18.020 --> 00:24:23.940
include remyelination, brain health, aging, and managing MS and comorbidities.
00:24:24.850 --> 00:24:29.950
Which of these areas do you think is closest to impacting everyday clinical practice?
00:24:30.660 --> 00:24:34.480
Great question. And I'll just rephrase how you summarize some of the work.
00:24:34.480 --> 00:24:39.420
I think remyelination, ways to repair, ways to help people, particularly with
00:24:39.420 --> 00:24:42.860
the progressive or neurodegenerative aspects of the disease is going to be a
00:24:42.860 --> 00:24:44.380
very hot topic, not only with
00:24:44.880 --> 00:24:48.820
thinking about results, how we interpret them, how that might impact people
00:24:48.820 --> 00:24:50.770
now living with the disease.
00:24:51.030 --> 00:24:54.340
And I think that will be really important to have a discussion about how these
00:24:54.340 --> 00:24:57.500
results are going to impact clinical practice over the next year.
00:24:58.150 --> 00:25:02.700
The other element to this which is related is in another hot topic that will
00:25:02.700 --> 00:25:04.650
be hit on frequently during the meeting
00:25:04.830 --> 00:25:07.720
and it's related to aging but it's related to other aspects as well
00:25:08.170 --> 00:25:12.770
is how do we define the disease biologically across the lifespan for people
00:25:12.770 --> 00:25:17.620
living with disease and for people with MS what does that mean for them?
00:25:19.160 --> 00:25:22.500
How we're trying to define the disease biologically? How does that correlate
00:25:22.500 --> 00:25:23.970
with their lived experience?
00:25:24.470 --> 00:25:26.230
And that will be directly related to
00:25:26.230 --> 00:25:31.530
how we as clinicians can begin to individualize care for people with MS.
00:25:31.530 --> 00:25:35.590
And I think the more we are capable and able to individualize care,
00:25:35.940 --> 00:25:39.590
that will be very impactful for people living day to day with the disease.
00:25:39.590 --> 00:25:44.540
And it's our job to make sure our pursuit of the biological definition of the
00:25:44.540 --> 00:25:49.930
disease's evolution is translated in things that are impactful for people with MS.
00:25:50.150 --> 00:25:55.400
Dr. Graves, your work frequently addresses how life stages, biological sex,
00:25:55.400 --> 00:25:58.240
and hormones intersect with neuroimmunology.
00:25:59.600 --> 00:26:04.100
What do you see as the key takeaways regarding reproductive health and pregnancy
00:26:04.100 --> 00:26:06.850
that people living with MS should listen for this year?
00:26:07.230 --> 00:26:11.000
It's really exciting. Over the last decade and maybe even longer,
00:26:11.000 --> 00:26:14.140
but with a lot of acceleration over the last couple of years,
00:26:14.140 --> 00:26:15.610
we're getting more and more data
00:26:16.090 --> 00:26:21.030
about the use of treatments around the time of pregnancy and the biology of
00:26:21.030 --> 00:26:23.290
what's happening around the time of pregnancy.
00:26:23.790 --> 00:26:28.860
And we have just seen a huge change in how clinicians can approach trying to
00:26:28.860 --> 00:26:33.010
keep women healthy as they get through pregnancy, trying to assure people of
00:26:33.010 --> 00:26:34.850
good outcomes for the infants.
00:26:35.350 --> 00:26:39.860
And so some key takeaways to look out for is how we can use medications around
00:26:39.860 --> 00:26:45.020
this time and how we can have a dual priority of not only making sure the baby
00:26:45.020 --> 00:26:46.400
does well, but making sure
00:26:46.830 --> 00:26:50.120
we're taking great care of mom through this transition, that we can do this
00:26:50.120 --> 00:26:55.430
with data, without fear, but with more and more data over time and assuredness
00:26:55.690 --> 00:26:58.640
that we can achieve great outcomes for both mom and baby.
00:26:59.460 --> 00:27:03.810
Brett, as one podcaster to another, I'm going to talk shop with you for a minute.
00:27:03.940 --> 00:27:09.080
How do you balance communicating the genuine hope that comes from preclinical
00:27:09.080 --> 00:27:11.230
and early phase trial breakthroughs,
00:27:11.780 --> 00:27:16.980
without setting unrealistic timelines in the minds of people affected by MS
00:27:17.200 --> 00:27:19.670
who are anxious for immediate options?
00:27:20.400 --> 00:27:23.360
I think it's a really good question. I think it's a really difficult thing that
00:27:23.360 --> 00:27:27.250
we do, but a really important part of what we do is that we be honest about this.
00:27:27.250 --> 00:27:30.040
I think honesty is one of the key things that comes through.
00:27:30.040 --> 00:27:34.280
And one of the things that I know Real Talk MS does, and one of the things that
00:27:34.280 --> 00:27:39.870
we hope comes out of patient community day as well, is not just giving an overly
00:27:39.870 --> 00:27:43.680
optimistic, overhyped representation of what's come out of the conference.
00:27:44.080 --> 00:27:49.070
We want to provide things in real time, not, sorry to use the pun with real talk.
00:27:49.390 --> 00:27:53.610
This is an event that's also going on every year. And so in the same way that
00:27:54.030 --> 00:27:57.260
Dr. Graves talks about keeping us on track and keeping us responsible
00:27:58.240 --> 00:28:01.090
If at Patient Community Day we talk about things unrealistically,
00:28:01.090 --> 00:28:05.140
in 12 months' time, we're going to need to answer those questions around it.
00:28:05.140 --> 00:28:09.630
There is that responsibility on us and that ownership on us to make sure that
00:28:09.630 --> 00:28:11.810
we can stand by the things that we talk about.
00:28:12.360 --> 00:28:16.220
And I think more and more, and John, if we're talking podcaster to podcaster,
00:28:16.880 --> 00:28:22.220
as someone who's done 471 episodes now on this, as we said before,
00:28:23.350 --> 00:28:26.630
more than anyone that research is advancing.
00:28:26.630 --> 00:28:29.850
And people are at a point now, people living with NS are at a point now where
00:28:29.850 --> 00:28:31.310
they do just want the facts.
00:28:31.640 --> 00:28:36.680
They see too much stuff around research that is overhyped and they tune out
00:28:36.680 --> 00:28:39.030
to it because they know that's unrealistic.
00:28:39.250 --> 00:28:43.160
So actually what I think is the best way to get people engaged and involved
00:28:43.160 --> 00:28:47.180
is to provide it in that really balanced fashion and people respect that and they work with it.
00:28:47.990 --> 00:28:50.570
Something I know you and I think about all the time,
00:28:51.620 --> 00:28:56.790
Dr. Graves, when someone living with MS learns about new research or hears about
00:28:56.790 --> 00:29:00.490
the positive outcome of a clinical trial during Patient Community Day,
00:29:01.160 --> 00:29:05.300
what's the most constructive way for them to bring that information into the
00:29:05.300 --> 00:29:07.480
clinic and discuss it with their neurologist?
00:29:07.910 --> 00:29:11.990
A lot of the times in my clinical encounters, patients will just bring it up.
00:29:11.990 --> 00:29:17.660
I've read this result and will decide how best to address their questions about
00:29:17.660 --> 00:29:21.120
it. if it's really involved, we may need a little more time and we may need
00:29:21.120 --> 00:29:22.810
to set aside time to do that.
00:29:23.570 --> 00:29:27.950
I think most clinicians practicing today are very open and comfortable about
00:29:27.950 --> 00:29:31.850
trying to communicate directly with their patients about their interpretation
00:29:31.850 --> 00:29:33.460
of results from clinical trials.
00:29:33.820 --> 00:29:39.320
Some patients send us messages, but I think a face-to-face discussion can often be very helpful.
00:29:39.840 --> 00:29:44.230
We also know in our clinics that when there's a really hot topic that's coming
00:29:44.230 --> 00:29:50.210
out, we try to provide kind of a broadcast to our patient population if we have some information.
00:29:50.210 --> 00:29:53.930
For example, if a new drug might be coming to market, but there's going to be
00:29:53.930 --> 00:29:58.210
delays or insurance issues are going to have a certain impact on whether or
00:29:58.210 --> 00:29:59.700
not this is actually accessible,
00:30:00.180 --> 00:30:04.170
we try to be proactive in communicating so we don't have to wait for the patients
00:30:04.170 --> 00:30:06.840
to come to us, but we can at least provide some information.
00:30:07.270 --> 00:30:11.070
But I think patients should be good self-advocates, should ask for information,
00:30:11.070 --> 00:30:14.330
should be understanding that if it's a long conversation, the physician may
00:30:14.330 --> 00:30:19.430
We have to find a different venue outside the clinic to be able to communicate that to the population.
00:30:19.860 --> 00:30:24.430
But I think patients should be ready and willing to advocate and ask the questions
00:30:24.430 --> 00:30:25.670
they have about what they learn.
00:30:26.380 --> 00:30:31.700
One last question for you both. If in-person and online attendees take away
00:30:32.040 --> 00:30:37.120
one central message or maybe have a shift in mindset as a result of patient
00:30:37.120 --> 00:30:40.570
community day, what do you hope it will be? Brett?
00:30:41.360 --> 00:30:45.140
I think for me, what beyond the actual information that's communicated,
00:30:45.140 --> 00:30:49.810
what I hope comes out of it is that this is a huge community of people who are
00:30:49.810 --> 00:30:52.090
all working together to achieve better outcomes.
00:30:52.610 --> 00:30:56.990
We have over 60 supporting partners now for patient community day this year
00:30:56.990 --> 00:30:58.560
that are coming from six continents.
00:30:59.060 --> 00:31:02.670
We're yet to get a supporting partner from Antarctica, but we're still working
00:31:02.670 --> 00:31:05.170
on it. I'm sure one will establish themselves down there.
00:31:05.770 --> 00:31:09.260
But I think it's that sense of community of having. We have researchers,
00:31:09.260 --> 00:31:13.630
we have neurologists, we have allied health professionals and they want to work
00:31:13.630 --> 00:31:15.470
directly with people living with MS.
00:31:15.470 --> 00:31:18.440
And I think that's the important thing that comes out of the event.
00:31:18.440 --> 00:31:21.070
It's not a one-way conversation. It's definitely a two-way.
00:31:21.530 --> 00:31:24.790
And so beyond the hope that maybe comes from hearing the research updates,
00:31:24.790 --> 00:31:28.540
it's that understanding that there is a real global community of people who
00:31:28.540 --> 00:31:33.730
are pulling together to generate real answers and to make real impacts for people living with MS.
00:31:35.170 --> 00:31:38.120
Dr. Graves, we'll give you the last word. Same question.
00:31:39.320 --> 00:31:44.790
I hope people attending Community Day walk away knowing that all of us on the
00:31:44.790 --> 00:31:51.280
clinical and research side and the development side want to keep their lives our central focus.
00:31:51.800 --> 00:31:56.570
That while a lot of this science can be interesting and we want to publish papers
00:31:56.570 --> 00:32:01.320
and we want to do new creative things, At the end of the day, our goal
00:32:01.780 --> 00:32:06.500
is to make their lives better and to make improvements in care and that we want
00:32:06.970 --> 00:32:10.940
to keep them at the center focus and we want to hear their voice and make sure
00:32:10.940 --> 00:32:15.510
their voice is represented as we move forward with advancements in MS.
00:32:16.870 --> 00:32:20.700
Dr. Jennifer Graves, Brett Drummond, I want to thank you both for all the work
00:32:20.700 --> 00:32:25.760
you've put into making Patient Community Day such an important and I'll say
00:32:25.760 --> 00:32:31.000
necessary aspect of this year's ECTROMS-ACTROMS combined meeting.
00:32:31.380 --> 00:32:33.950
We'll look forward to reconnecting with you both in Toronto.
00:32:34.740 --> 00:32:39.370
As a reminder, Patient Community Day takes place Friday, October 23rd from 3
00:32:39.370 --> 00:32:45.190
to 6 p.m. Eastern Time in person and 3 to 7 p.m. Eastern Time online.
00:32:45.370 --> 00:32:50.210
That extra time is going to be devoted to getting more of your questions answered online.
00:32:50.720 --> 00:32:53.770
You'll find the link to register in today's show notes.
00:32:54.440 --> 00:32:58.880
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered
00:32:58.880 --> 00:33:00.590
by the National MS Society.
00:33:00.930 --> 00:33:05.000
And you can share this episode of the podcast by letting your friends or family
00:33:05.000 --> 00:33:12.540
members know that all they have to do is point their web browser at realtalkms.com slash 472.
00:33:13.040 --> 00:33:17.250
You'll find that link in today's show notes so you can easily copy and paste
00:33:17.250 --> 00:33:19.750
it right into an email or a text.
00:33:20.690 --> 00:33:26.080
Believe it or not, next week marks the ninth anniversary of this podcast.
00:33:26.660 --> 00:33:31.660
And we have a special episode planned with some special announcements and a special guest.
00:33:32.190 --> 00:33:36.020
Dr. Tim Coetzee, the president and CEO of the National MS Society,
00:33:36.230 --> 00:33:40.450
will be joining me in a wide-ranging conversation that you won't want to miss.
00:33:40.920 --> 00:33:46.900
I hope you'll join me for an episode that, quite literally, has been nine years in the making.
00:33:47.730 --> 00:33:54.320
I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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