Podcasts about tecfidera

Tecfidera und Vumerity, die Fumarate, gehören zu den Immuntherapien für milde und moderate Verläufe der Multiplen Sklerose. Die Folge zum Nachlesen findest Du auf meinem Blog: https://ms-perspektive.de/256-tecfidera Tecfidera und Vumerity, die Fumarate, bilden den Auftakt der Reihe über zugelassene verlaufsmodifizierende Therapien bei MS. In den einzelnen Artikeln versuche ich, einen guten Überblick zu geben, erhebe aber keinen Anspruch auf Vollständigkeit der Informationen. Die Reihenfolge orientiert sich an der immunologischen Wirkung und beginnt mit den eher breit angelegten Wirkmechanismen, die bei einem Teil der Betroffenen funktionieren, und reicht bis zur gezielten Zelldepletion, die bei der Mehrzahl aller MS-Patienten wirken. Detaillierte und persönliche Therapieempfehlungen können nur von MS spezialisierten NeurologInnen erteilt und nicht von mir gegeben werden. Inhaltsverzeichnis Allgemeine Informationen Wie werden Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) innerhalb der Immuntherapien eingestuft? Wofür sind Dimethylfumarat (Tecfidera) und Diroximelfumarat (Vumerity) zugelassen? Wie sieht es bei speziellen Patientengruppen aus? Wer sollte Dimethylfumarat (Tecfidera und Generika) und Diroximelfumarat (Vumerity) meiden? Wie wirken Dimethylfumarat (Tecfidera und Generika) und Diroximelfumarat (Vumerity)? Wie wird es eingenommen? Wie wirksam sind Dimethylfumarat (Tecfidera und Generika) und Diroximelfumarat (Vumerity)? Risiken und Nebenwirkungen von Dimethylfumarat (Tecfidera und Generika) und Diroximelfumarat (Vumerity) Was ist anders an Diroximelfumarat (Vumerity)? Impfungen Quellen Schlussbemerkung Quellen Für die Erstellung der Inhalte habe ich folgende Quellen verwendet: Vorlesung zu Dimethylfumarat und Diroximelfumarat von Prof. Mathias Mäurer im Rahmen des Masterstudiengangs Multiple Sklerose Management Qualitätshandbuch der KKNMS zu Dimethylfumarat MS-Selfie Cards von Prof. Dr. Gavin Giovannoni Deutsches Multiple Sklerose- und Kinderwunschregister (DMSKW) Informationen aus dem Interview mit Prof. Dr. Barbara Kornek zur pädiatrischen MS Schlussbemerkung Bitte denke daran, dass es nicht das eine gute Medikament gibt, das allen hilft, sondern dass immer abgewogen werden muss, was für die jeweilige Person am besten geeignet ist. Auch andere Krankheiten, persönliche Ziele und Vorlieben müssen berücksichtigt werden. Dein Neurologe und die MS-Schwester sind die richtigen Ansprechpartner und können individuelle Empfehlungen aussprechen. Dieser Artikel dient nur zu Informationszwecken und stellt keine Empfehlung dar. Was dem einen hilft, ist für den anderen vielleicht wirkungslos. Ich hoffe, dass du zusammen mit deinem Neurologen und deiner MS-Schwester schnell die richtige Immuntherapie für dich finden wirst. Und dass du ein erfülltes, glückliches und selbstbestimmtes Leben mit MS führen kannst, unterstützt durch einen gesunden Lebensstil und eine Portion Glück. --- Bis bald und mach das Beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisherigen Podcastfolgen.

Living well with MS means learning to plan ahead. And, while planning ahead may not solve every issue that crosses your path, taking time to understand some of the details and making the right choices when it comes to your health insurance can make a huge difference in your MS care and treatment. MS Navigator and insurance resources specialist Carla Turechek joins me to share strategies for successfully navigating the health insurance maze with a minimum number of "surprises." We're also sharing study results that can help you get the most benefit from your everyday physical activity. We'll introduce you to an early-stage biotech company that just secured funding to develop three novel therapies that will address myelin repair and neuroinflammation. We'll share study results that show that a high level of a protein in the blood is a reliable predictor of future disability progression among people living with progressive MS. We're sharing some eye-opening discount prices from the Mark Cuban Cost Plus Drug Company for generics for three different disease-modifying therapies. And, speaking of generics, we'll explain why you can buy the generic for Tecfidera in the United States today, but it won't be available in Europe until next year, at the earliest. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Successfully navigating the health insurance maze  :22 STUDY: The benefit of physical activity lies in step rate and not step count  1:42 Myrobalan Therapeutics secures financing to develop 3 therapies that address myelin repair and neuroinflammation  3:47 STUDY: High levels of a protein in the blood may predict disability progression in people with primary progressive MS  5:41 You'll want to check out the prices of generics for 3 disease-modifying therapies at Mark Cuban's Cost Plus Drug Company  8:50 Generics for Tecfidera have been delayed at least one year in Europe  10:47 MS Navigator and insurance resources specialist Carla Turechek shares strategies for maximizing your health insurance benefits and minimizing your costs   12:03 Share this episode  26:46 Have you downloaded the free RealTalk MS app?  27:07 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/334 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Free-Living Ambulatory Physical Activity and Cognitive Function in Multiple Sclerosis: The Significance of Step Rate vs Step Volume https://pubmed.ncbi.nlm.nih.gov/38214757 Myrobalan Therapeutics  https://myrotx.com STUDY: Serum Glial Fibrillary Acidic Protein and Disability Progression in Progressive Multiple Sclerosis  https://onlinelibrary.wiley.com/doi/10.1002/acn3.51969 The Mark Cuban Cost Plus Drug Company https://costplusdrugs.com Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 334 Guest: Carla Turechek Privacy Policy

About Deborah Glasser:Deborah Glasser holds an MBA in Marketing and Finance from the University of Chicago Booth School of Business and a B.A. with honors from Tufts University. Deborah is currently the Head of Vaccines in North America at Sanofi. In this role, she spearheads a team committed to pursuing scientific breakthroughs, focusing on the development and enhancement of immunizations. Sanofi, a global pharmaceutical giant, places a strong emphasis on innovation, and Deborah plays a crucial role in driving the vision forward, expanding access to vaccines, and advancing public health initiatives throughout the U.S. and Canada.Drawing on a rich and varied professional background, Deborah brings more than a decade of experience to her current role. Her journey includes an illustrious 13-year tenure at Biogen, where she held diverse positions across its U.S., European, and global organizations. Notably, she played a key role in the successful launch of Tecfidera, an oral multiple sclerosis product that achieved remarkable success, generating $1.3 billion in U.S. sales within its first four full quarters on the market.Things You'll Learn:The vaccine industry faces intense competition.RSV stands as the primary reason for infant hospitalizations.Approximately 70 out of every 100,000 individuals end up hospitalized due to the flu.The flu poses a significant and serious risk, with an average of 36,000 deaths annually, potentially reaching 98,000 in severe seasons. These deaths are preventable.It's crucial to recognize the seriousness of the flu and take preventive measures to avoid unnecessary fatalities.Resources:Connect with and follow Deborah Glasser on LinkedIn.Follow Sanofi on LinkedIn and visit their website.

Good morning from Pharma and Biotech Daily, the podcast that gives you only what's important to hear in the Pharma and Biotech world. In today's episode, we have several news stories to cover. Let's dive right in.## Lawsuits and Mergers:UnitedHealth and its subsidiary OptumRx are facing a lawsuit by Osterhaus Pharmacy in Iowa over the use of "unconscionable" fees imposed by pharmacy benefit managers. The pharmacy alleges that these fees are contributing to the closure of independent pharmacies. Osterhaus Pharmacy is also suing CVS Caremark over similar issues.On the merger front, Jefferson Health and Lehigh Valley Health Network have announced their intent to merge, creating a 30-hospital health system serving Pennsylvania and New Jersey. Wisconsin's Froedtert Health and ThedaCare have also finalized their merger plans, with the combined system set to launch on January 1, 2024.Steward Health Care is facing a lawsuit under the False Claims Act for allegedly improperly billing Medicare for over 1,000 false claims. And approximately 1,800 healthcare workers at Prime Healthcare facilities in Southern California are planning a seven-day strike to protest staffing conditions.The Federal Trade Commission (FTC) and Department of Justice (DOJ) have finalized merger guidelines that could make it more difficult for healthcare mergers and acquisitions to be approved. These new guidelines are expected to give regulators more power to challenge vertical and cross-market deals.## Healthcare Tech and Research:In the healthcare tech space, hospitals are adopting advanced technologies like virtual reality and AI to improve staff burnout and enhance clinical decision-making. Additionally, researchers are exploring how to effectively leverage real-world data to optimize clinical trials and bring new therapies to market. There are also articles on increasing diversity in clinical trials, the development of cell and gene therapies, and the future of oncology research.## Biotech Deals and Intellectual Property:GlaxoSmithKline (GSK) has signed a potential $1.7 billion antibody-drug conjugate (ADC) deal with China's Hansoh Pharma, allowing GSK exclusive rights to develop and commercialize certain ADC products in China. This deal is part of GSK's strategy to expand its presence in China and tap into the growing biopharmaceutical market in the country.Biogen has secured exclusivity for its multiple sclerosis therapy Tecfidera in the European Union until early 2025. This decision upholds exclusive marketing protection for Tecfidera, preventing generic competition until February 3, 2025.These developments highlight the ongoing efforts of pharmaceutical companies to secure partnerships and protect their intellectual property rights. Both GSK and Biogen are strategically positioning themselves in key markets to drive growth and maintain their competitive edge.## Marketing News and Insights:In the marketing world, brands are evolving their influencer strategies and shaping their approaches to popular culture. Pringles and The Caviar Co.'s partnership went viral on TikTok and Instagram, creating a new snacking occasion. Oreo's return to the Super Bowl after a decade is also highlighted, referencing their memorable response to a power outage in 2013.Zacapa Rum is featured in its first global campaign titled "Lips to Soul," focusing on female empowerment. The text mentions sponsored content about building community with Gen Z on social media and rising web traffic on the platform formerly known as Twitter. Oreo will be airing its second-ever in-game spot during Super Bowl LVIII.## Blockbuster Drugs and Predictions:The article discusses the current state of blockbuster drugs in the pharmaceutical industry, noting that COVID-19 vaccines like Pfizer and BioNTech's Comirnaty experienced a rapid rise in sales due to the pandemic. However, it is predicted that sales for COVID-related blockbusters will decline in the coming years.Merck &

Good morning from Pharma and Biotech daily: the podcast that gives you only what's important to hear in Pharma and Biotech world. In today's episode, we have several news updates in the biopharma industry. Let's dive in:## News 1: Uniqure's gene therapy setbackUniqure's gene therapy for Huntington's disease faced a setback as the company's share price fell over 10% following the release of more data from a small study. This news highlights the challenges in developing effective therapies for genetic diseases.## News 2: Novo Nordisk's investment in vaccine researchThe foundation behind Novo Nordisk plans to invest $260 million in vaccine research and development. The initiative will focus on developing vaccines for tuberculosis, influenza, and group A streptococcus. This investment reflects the commitment to improving public health and addressing global health challenges.## News 3: Biogen's market monopoly for TecfideraBiogen's multiple sclerosis medicine, Tecfidera, will maintain its market monopoly in Europe until early 2025 after European regulators revoked approvals for five generic versions of the drug. This decision ensures continued access to this important medication for patients with multiple sclerosis.## News 4: Merck's new pneumococcal vaccineMerck has received an FDA decision date for its new pneumococcal vaccine, which targets 21 strains of pneumococcal bacteria and would compete with Pfizer's Prevner 20 if approved. This development brings hope for improved prevention of pneumococcal infections.## News 5: Fewer biotech companies going publicFewer biotech companies are going public after a record run, and the article discusses how these companies are performing in the market. This trend suggests a shift in the biotech industry and raises questions about future growth and innovation.## News 6: Structure's obesity pill falls shortStructure shares plummeted as results from a phase 2 trial for their obesity pill fell short of expectations. This outcome highlights the challenges of developing effective treatments for obesity, a prevalent and complex health issue.Moving on to our next set of news:## News 7: FTC and DOJ finalize merger guidelinesThe Federal Trade Commission (FTC) and the Department of Justice (DOJ) have finalized merger guidelines that could make it more difficult for healthcare mergers and acquisitions to proceed. These new guidelines aim to ensure fair competition and protect consumers' interests.## News 8: Biden administration's call for action on child Medicaid enrollmentThe Biden administration is urging nine states to address high disenrollment rates in child Medicaid and Children's Health Insurance Program (CHIP). These nine states account for around 60% of the decline in enrollment in these programs between March and September. The administration is taking steps to address this issue and improve access to healthcare for children.## News 9: John Muir Health and Tenet Healthcare deal collapsesThe deal between John Muir Health and Tenet Healthcare for the acquisition of a California medical center has collapsed following a lawsuit from the FTC. The regulators sued to block the deal over concerns that it could lead to increased healthcare costs in the region. This turn of events highlights the importance of regulatory oversight in healthcare mergers and acquisitions.## News 10: Molina Healthcare lowers sale priceMolina Healthcare has agreed to lower the sale price of Bright Health's California Medicare Advantage unit. The original sale price was $510 million, but it has been lowered to $425 million. This adjustment reflects the changing dynamics of

Welcome to the NeurologyLive® Mind Moments® podcast. Tune in to hear leaders in neurology sound off on topics that impact your clinical practice. In this episode, we spoke with Darin Okuda, MD, director of Neuroinnovation and Multiple Sclerosis & Neuroimmunology Imaging Program at UT Southwestern Medical Center. He spoke about the phase 2 ARISE study assessing dimethyl fumarate (Tecfidera; Biogen) in patients with radiologically isolated syndrome, the significance of the findings, next steps in validating this therapy, and more.  Looking for more multiple sclerosis discussion? Check out the NeurologyLive® multiple sclerosis clinical focus page. Episode Breakdown: 1:20 – Overview of ARISE and conduct of study 4:20 – Potential subgroup responders to dimethyl fumarate 8:10 – Efforts to improve the detection of radiologically isolated syndrome 10:05 – Neurology News Minute 11:55 – Next steps of research following ARISE 16:50 – Closing thoughts on significance of the study This episode is brought to you by Medical World News, a streaming channel from MJH Life Sciences®. Check out new content and shows every day, only at medicalworldnews.com. The stories featured in this week's Neurology News Minute, which will give you quick updates on the following developments in neurology, are further detailed here: CNM-Au8 Shows Positive Findings on MS-Related Biomarkers of Whole Brain, White Matter Aducanumab's Label Updated to Include Risks on Brain Bleeding Primary Care Physicians Show Greater Confidence in Diagnosing Alzheimer Disease Through DISCERN Skin Test FDA Approves Extended-Release Deutetrabenazine for Huntington Disease Chorea, Tardive Dyskinesia Thanks for listening to the NeurologyLive® Mind Moments® podcast. To support the show, be sure to rate, review, and subscribe wherever you listen to podcasts. For more neurology news and expert-driven content, visit neurologylive.com. REFERENCE Okuda DT, Kantarci O, Lebrun-Frenay C, et al. Dimethyl fumarate delays multiple sclerosis radiologically isolated syndrome. Ann Neurol. 2023;93(3):604-614. doi:10.1002/ana.26555

Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, reads a news article on how differences in the gut microbiome have been linked to an altered risk of developing low immune cell counts following treatment with Tecfidera. He also reads a second article reporting that Tevogen Bio has announced plans to develop T-cell therapies that target the Epstein-Barr virus. =================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

The first step in living well with MS is establishing a treatment plan with your neurologist or MS specialist. And a disease-modifying therapy, or DMT, should be the foundation of that plan. Joining me to talk about what disease-modifying therapies can and can't do, and how to work with your doctor to find the best MS medication for you is the Clinical Pharmacy Specialist in Multiple Sclerosis and Neuroimmunology at VCU Health in Richmond Virginia, Ross Tingen. Why are we talking about global warming on a podcast about MS? Because we're talking about the results of a study that show how climate change has a negative impact on people living with multiple sclerosis and other neurological conditions. We're also sharing the results of a study that demonstrate the sobering reality of the association between socioeconomic status and death among people living with MS. If you're on Tecfidera, you'll want to hear about a study that focused on how alcohol may change the efficacy of your DMT.   And we'll tell you about a study that revealed significant differences in how the prodromal phase of MS affects men and women at different ages. (And we'll also tell you why understanding the MS prodrome is important!) We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How to find the best MS medication for you  :22 Study shows climate change impacts people living with MS  1:08 Study examines the impact of socioeconomic status on death among people with MS  3:28 Study shows alcohol dulls the metabolism of Tecfidera  7:01 Study analyzes differences due to sex and age in the MS prodrome  8:35 Ross Tingen discusses how to work with your doctor to find the best disease-modifying therapy for you  18:40 Share this episode  27:19 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/275 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: Impacts of Climate Change and Air Pollution on Neurologic Health, Disease, and Practice: A Scoping Reviewhttps://n.neurology.org/content/early/2022/11/16/WNL.0000000000201630 Tremlett's MS Research Explained: Low Socioeconomic Status Was Associated with a Higher Mortality Risk in Multiple Sclerosis Explained https://tremlettsmsresearchexplained.wordpress.com/category/ms-socioeconomic-status-research STUDY: Low Socioeconomic Status Was Associated with a Higher Mortality Risk in Multiple Sclerosis https://journals.sagepub.com/doi/full/10.1177/13524585221129963 STUDY: Alcohol Inhibits the Metabolism of Dimethyl Fumarate to the Active Metabolite Responsible for Decreasing Relapse Frequency in the Treatment of Multiple Sclerosis https://journals.plos.org/plsuone/article?id=10.1371/journal. pone.0278111 Tremlett's Research Explained: Sex and Age Differences in the Multiple Sclerosis Prodrome Explained https://tremlettsresearchexplained.wordpress.com/2022/11/03/sex-and-age-differences-in-the-multiple-sclerosis-prodrome-explained STUDY: Sex and Age Differences in the Multiple Sclerosis Prodrome Explained https://pubmed.ncbi.nlm.nih.gov/36408518 Take the iConquer MS Caregiver Survey https://realtalkms.com/caregiver Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 275 Guest: Ross Tingen, PharmD, BCPS, MSCS Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy

Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, reads a news article reporting on how exposure to high-efficacy DMTs is linked to an increased risk of cervical abnormalities in women with MS. He also reads another news article on Tecfidera reducing the risk of experiencing the first MS symptoms in adults with radiologically isolated syndrome. =================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

Biogen has agreed to pay $900 million to resolve allegations that it violated federal law by paying kickbacks to doctors to persuade them to prescribe its multiple sclerosis drugs, federal prosecutors said. The agreement settled a whistleblower lawsuit brought by former Biogen employee Michael Bawduniak, according to a statement from the office of U.S. attorney for Massachusetts, Rachael Rollins. Under the terms of the settlement, Biogen will pay more than $843 million to the federal government and more than $56 million to 15 states for overbilling Medicare and Medicaid insurance programs. Bawduniak will receive a portion of the federal recovery. The Cambridge, Massachusetts-based pharmaceutical company in a statement said it settled so it can focus on “our patients and strategic priorities” and said the settlement does not include an admission of liability. “Biogen believes its intent and conduct was at all times lawful and appropriate and Biogen denies all allegations raised in this case,” the company's statement said. The lawsuit alleged that from January 2009 through March 2014, Biogen paid physicians speaking fees, consulting fees and bought them meals that were actually kickbacks, to get them to prescribe Avonex, Tysabri and Tecfidera in violation of the Anti-Kickback Statute. “We thank Mr. Bawduniak for uncovering this behavior and bringing it to light,” Rollins said. “This matter is an important example of the vital role that whistleblowers and their attorneys can play in protecting our nation's public health care programs.” This article was provided by The Associated Press.

More than half of the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. Sleep-related problems can lead to additional health issues, not to mention an overall decline in quality of life and well-being. The Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, Dr. Katie Siengsukon, returns to the podcast to talk about how sleep affects MS and what you can do about it. We're also sharing all the ways the Inflation Reduction Act will benefit people living with MS. And we're celebrating the MS Activists who helped push this legislation through Congress! We have some good news to share about Mark Cuban's CostPlus Drug Company. We'll give you a quick review of where to find the show notes for each episode of RealTalk MS (and why you might want to do that!) We're sharing results from a study that demonstrated an important benefit for people with primary progressive MS who were treated with diseaes-modifying therapies. We'll tell you about two scientists who identified a combination of genes that increase a woman's risk of developing MS by 20 times. And we'll remind you that Burgers to Beat MS is happening this Thursday! We have a lot to talk about! Are you ready for RealTalk MS??! This Week: How Sleep impacts MS  :22 All the ways the Inflation Reduction Act will benefit people living with MS  1:18 Mark Cuban's CostPlus Drug Company now carries the generic for Tecfidera  5:02 Where to find the show notes for every episode of RealTalk MS  9:53 Study results show that DMT use reduces the risk of wheelchair dependence for people with primary progressive MS  12:23 Researchers identify genetic mutations that increase the risk of a woman developing MS by 20 times  14:02 Burgers to Beat MS is happening Thursday!  17:48 Dr. Katie Siengsukon discusses how sleep impacts MS  19:42 Share this episode  35:48 Download the RealTalk MS app for your iOS or Android device   36:09 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/258 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com National MS Society COVID-19 Vaccine Guidance for People Living with MS https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance Become an MS Activist https://nationalmssociety.org/advocacy Mark Cuban's CostPlus Drug Company https://costplusdrugs.com STUDY: Disease-Modifying Treatments and Time to Loss of Ambulatory Function in Patients with Primary Progressive Multiple Sclerosis https://jamanetwork.com/journals/jamaneurology/article-abstract/2794292 STUDY: X-Linked Genetic Risk Factors that Promote Autoimmunity and Dampen Remyelination are Associated with Multiple Sclerosis Susceptibility https://sciencedirect.com/science/article/pii/S2211034822005739 Burgers to Beat MS https://BurgersToBeatMS.ca Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 259 Guest: Dr. Katie Siengsukon Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS Privacy Policy  

Heute interviewe ich den MS-Patienten und gleichnamigen Autoren von Alex Blog, der auch aufgrund der Erkrankung zu sich selbst gefunden hat.   Hier geht es zum Blogbeitrag: https://ms-perspektive.de/interview-mit-dem-ms-patienten-und-autoren-von-alex-blog   Diesmal habe ich Alex zu Gast im Interview. Er erhielt 2014 die Diagnose Multiple Sklerose, ca. 12 Jahre nach einem ersten deutlichen Schub, einer halbseitigen Lähmung. Wir sprechen über seine Texte, die bei der DMSG Niedersachen auf Alex' Blog erschienen sind. Sie decken insgesamt vier Jahre ab, in denen er seinen Weg mit der Erkrankung und zu sich selbst gefunden hat. Heute ist Alex sehr reflektiert und hat sich gelöst davon immer etwas zu „müssen“ hin zu „ich darf“. Auf Alex' Blog lernst Du die Geschichte eines Mannes von tausend Gesichtern der MS kennen. Und ob diese Geschichte interessant für Dich ist, findest Du im Beitrag heraus.   Inhaltsverzeichnis Vorstellung Diagnose und aktueller Status Alex' Blog Tipps Wünsche und Ziele Blitzlicht-Runde Verabschiedung Vorstellung Ich bin Alexander Gottschalk, 39 Jahre alt und stamme ursprünglich aus Magdeburg. Beruflich bin ich nach Hannover gegangen und heute sehr aktiv bei der DMSG Niedersachsen. Mittlerweile bin ich Autor von dem Blog: „Ich, mein Freund. Mein Weg zu mir selbst unter erschwerten Bedingungen.“ Im Blog geht es um meinen Weg. Wie ich gelernt habe mich selbst neu wahrzunehmen und mit der MS anzufreunden und wie ich mir neue Sichtweisen auf die Welt und die Menschen erarbeitet habe. Die MS hat einen unglaublichen Entwicklungsschub bei mir ausgelöst und mir ermöglicht, mich selbst neu zu entdecken, nachdem ich viele, viele vermeintliche Verluste hinnehmen musste. In den Artikeln arbeite ich mit vielen Sprachbildern, die ich aufgrund meiner Erfahrungen hoffentlich auch für andere verständlich in Szene setzen kann. Das Schreiben über meine Erfahrungen hilft mir, das Fortschreiten der Krankheit selbst zu verarbeiten. Ich beginne dabei natürlich am Anfang, als es mir sehr schlecht ging bzw. ich mir Fragen stellte, die ich nicht befriedigend beantworten konnte. Das Ganze entwickelt sich vor allem durch die Unterstützung meiner Therapeuten und meinem Durst nach Wissen. Es geht darum sich nicht selbst aufzugeben, Möglichkeiten in diesem jungfräulichen Neuland der Krankheit zu entdecken, die bisherige Erfahrungen nicht in der Lage waren, abzudecken. Diagnose und aktueller Status Seit wann hast du die Diagnose und was war der Anlass für die Diagnose? Die endgültige Diagnose erhielt ich 2014, als die Fatigue überhandnahm, und ich mich immer mehr in mich selbst zurückzog. Wie hast Du die Diagnose aufgefasst? Und wie war es für Dein Umfeld? Ich war froh, dem an mir zerrenden Kind einen Namen geben zu können, hatte auch Unterstützung von meiner damaligen Frau. Von Anfang bin ich sehr offen damit umgegangen. Mein Arbeitgeber und meine Familie waren natürlich betroffen. Allerdings stieß ich nur selten auf Verständnis. Es fiel mir damals sehr schwer, meine Eigenartigkeiten zu erklären. Ich wusste ja selber noch nicht sehr viel über die Krankheit und schon gar nicht über mich selbst. Wie geht es Dir aktuell mit der MS? So lala, es gibt solche und solche Tage. Ich bin froh, dass ich mich auf die Suche nach mir selbst begeben habe, somit kann ich sehr viel besser mit meinen Körperlichkeiten und Erschöpfungszuständen umgehen. Jede Krankheit beginnt bekanntlich im Kopf und durch meine Beschäftigung mit mir selbst ist die MS nicht mehr so sehr wirksam hinsichtlich Selbstmitleid und Rückzug. Es gibt natürlich Tage, da haben die Einschränkungen, speziell die Fatigue, prägende und einnehmende Qualität. Aber das kann ich mittlerweile zulassen, ohne daran zu verzweifeln. Welche Behandlung wurde Dir zu Beginn der Diagnose empfohlen und bist Du der Empfehlung gefolgt? Tecfidera, ja ich bin der Empfehlung gefolgt. Ich bin selber kein Arzt und trotz aller vergangenen Widrigkeiten habe ich immer ein großes Urvertrauen gegenüber Fachleuten gehabt und habe es immer noch. Die Frage ist ja auch, was wäre, wenn ich keine Medikamente nehmen würde, wie würde es dir dann jetzt gehen? Hast Du im Laufe der Zeit Erfahrungen mit verschiedenen verlaufsmodifizierenden Therapien gemacht? Ja habe ich, Gilenya und aktuell Ocrevus, muss aber dazu sagen, dass ich diese Medikamente gar nicht merke, so soll das wohl auch sein, nur bei Tecfidera am Anfang hatte ich die bekannten Flushs. Warst Du bei einer oder mehreren Reha-Maßnahmen wegen der MS? Ja, ich habe mittlerweile zwei Rehas gemacht. Nach der Ersten wurde ich gefragt, ob ich denn Therapeut oder Patient wäre. Das hat also wirklich was gebracht! Na ja und nach der zweiten war die Krankheit bereits so fortgeschritten, dass ich danach zum Rentner wurde. Glücklicherweise, darf ich sagen. Welche symptomatischen Therapieangebote nutzt Du und wie zufrieden bist Du damit? Physiotherapie, Ergotherapie, Psychotherapie, Logotherapie und zu Hause mache ich auch noch ein bisschen. Habe zwischenzeitlich auch mal Funktionstraining gemacht, aber das wurde mir ziemlich schnell einfach zu anstrengend. Danach war immer der ganze Tag vorbei weil Akku leer. Die ersten vier Sachen reichen mir durchaus, machen Spaß, geben ein wenig Struktur, sind aber auch anspruchsvoll Besonders die Psychotherapie will ich nicht mehr missen, das hilft mir meine Depression aufzulösen und mich nun nicht weiter geistig und substanziell selbst zu vergiften. Wie versuchst Du, auf den Verlauf der MS Einfluss zu nehmen? Indem ich lerne, mit ihr umzugehen. Ich halte nicht viel davon mir viele verschiedene Mittelchen reinzutun und mich an jeden Nahrungsergänzungsstrohhalm zu klammern und zu hoffen. Mich selbst bewusst wahrnehmen und auf mich hören, ist sehr viel mehr wert, finde ich. Hilfe und Hilfsmittel annehmen und entschleunigen. Wenig Stress und öfter Neinsagen hilft ungemein. Alex' Blog Wie kamst Du auf die Idee, Deine Gedanken und Gefühle aufzuschreiben? Als ich meinen Schwerbehindertenausweis beantragt hatte, habe ich einen Widerspruch einlegen müssen, weil ich mit dem Ergebnis des Antrags nicht zufrieden war. Ich hatte damals ursprünglich 30 GdB bekommen, aber auch damals schon fühlte ich mich nicht richtig eingestuft und somit habe ich einen Widerspruch geschrieben. Damit fing alles an und irgendwie, ich weiß nicht genau, habe ich dann immer mal wieder was geschrieben. Ja und dann verselbstständigte sich das und ich musste einfach schreiben, auch weil ich gemerkt habe, dass ich nach jedem Text ruhiger wurde. Welche Rolle spielen die MS und die dazugehörigen Symptome in Deinen Beiträgen auf Alex' Blog? Nun, beides sind natürlich Grundlage für meine Gedanken und Überlegungen. Ich bin beruflich geprägt Probleme zu lösen, so als Speditionskaufmann. Früher waren es Transport und Logistikprobleme. Das hilft mir wirklich sehr, denn irgendwie muss ich ja mit dem, was ich habe, energiesparend umgehen. Jetzt, nach ca. dreieinhalb Jahren habe ich meinen Alltag entsprechend neu reglementiert, eben so dass die MS und deren Symptome nicht allzu sehr im Vordergrund stehen. Waren die Texte von Anfang an für alle lesbar oder wie hat sich das Projekt "Alex' Blog" entwickelt? Nein, es hat eine ganze Weile gedauert, bis ich mich überhaupt einer Selbsthilfegruppe angeschlossen habe, der DMSG. Und die Oberindianer dort gaben mir die Möglichkeit, meine Texte zu veröffentlichen, nachdem sie einige gelesen hatten. Erst gab es nur die Texte an sich, sie wurden gleich veröffentlicht, nachdem ich sie eingereicht habe. Und nun gibt es mittlerweile vertonte Texte, also einige, nicht alle, die nach und nach auf einer neueren professionell erstellten Seite veröffentlicht werden. Daran waren zwei Leute von der DMSG, eine Grafikerin, ein IT'ler, der professionelle Sprecher und natürlich ich beteiligt. Welche Rückmeldungen bekommst Du zu Deinen Texten? Durchweg positive, die ersten Texte sind natürlich ein wenig finster. Da haben die Leute vielleicht aus Verständnislosigkeit nach dem Sinn meiner Unternehmung gesucht. Ich habe überlegt ob ich vielleicht irgendwo in der Mitte meiner Entwicklung anfange. Also mit einem Text und wo man sieht, dass es mit mir bergauf geht. Aber das finstere Vorher gehört eben auch dazu. Bei manchen Texten wurde geweint, bei anderen gelacht und oft blieb das Lachen im Halse stecken. Mir wurde gesagt, dass eine Entwicklung auch in meinem Schreibstil erkennbar ist. Über welchen Zeitraum Deines Lebens erstrecken sich die Texte auf Alex' Blog und hast Du vor ein festes Ende zu setzen? Es beginnt mit meinem Widerspruch gegen das Sozialamt im Februar 2019. Es soll ein festes Ende geben, geplant ist das für dieses Jahr. Wann genau und ob überhaupt, ich mache mir da selbst keine Auflage. Ich lasse mir mittlerweile Zeit beim Schreiben und auch beim Einordnen meiner Erfahrungen. Es ist, glaube ich kein klassischer Blog im Sinne von Tagebuch, sondern ein Erfahrungsbericht, wenn man so will. Schon gar kein Ratgeber, eher eine Sammlung von Geschichten, die zufällig was mit MS zu tun haben. Was haben die Texte mit Dir selbst gemacht? Tja, das klingt jetzt bestimmt irgendwie komisch, aber sie haben mich reifer werden lassen. Gelassener. Ich verfluche mich nicht mehr sondern kokettiere mit meinen vermeintlichen Unzulänglichkeiten, ich nenne sie auch Special Effects. Wie hast Du Dich im Laufe der Zeit verändert und worauf bist Du besonders stolz? Ich bin sehr viel aufmerksamer mir selbst gegenüber geworden. Und auch unsere Mitwelt nehme ich viel differenzierter wahr. Ich schaue auf das, was ist und nicht, was sein sollte oder sein müsste. Am meisten bin ich darauf stolz mich selbst nicht mehr so ernst zu nehmen, fünf auch mal gerade sein lassen zu können und mich selbst nicht mehr so unter Druck zu setzen. Die Erkenntnis, dass ich nicht muss, sondern darf. Tipps Was war dein tiefster Tiefpunkt mit der MS und wie hast du dich wieder empor gekämpft? Ganz klar, meine Scheidung. Der Verlust von Haus und Hof, und die plötzliche Erkenntnis, dass ich nicht mehr so belastbar bin, wie es früher der Fall gewesen ist. Es hat eine Weile gedauert, aber meine Strategie weg von der Lethargie hin zu mehr Spaß war und ist das genaue Hinsehen und Hinfühlen auch und gerade in unangenehmen Situationen. Das schafft Verständnis und Wissen, härtet ein wenig ab, zeigt Möglichkeiten auf und macht vor allem flexibel. Wie lange hat es gedauert bis Du wieder freundlicher auf die Welt schauen konntest? Dezember 2020 bis hin zu Neujahr 2021. Also knapp zwei Jahre nachdem ich mit der Schreiberei angefangen habe, sechs Jahre nach meiner endgültigen Diagnose und 19 Jahre nach meinem ersten Schub bei dem ich als Azubi halbseitig gelähmt war. Ich hatte 11-12 Jahre keine gravierenden Symptome also auch keinen Grund, mich so intensiv mit mir zu beschäftigen. Wünsche und Ziele Gibt es einen großen unerfüllten Wunsch? Na klar! Gesehen und angenommen werden!! Als der Mensch, der ich heute bin. Geborgenheit, Nähe, Zugewandtheit, Trost, eine Freundin. Welche Entwicklung wünschst du Dir im Bereich der MS in den kommenden 5 Jahren? Ich bin generell sehr vorsichtig mit Wünschen. Am Ende kriegt man auch noch, was man sich vorstellt. Natürlich möchte ich, dass ein Mittelchen gegen die MS gefunden wird, welches alle Narben zurückbildet und Symptome verschwinden lässt. Mich irgendwie wieder der werden lässt, der ich mal war. Blitzlicht-Runde Was war der beste Ratschlag, den du jemals erhalten hast? Trau dich und guck mal ein bisschen genauer hin. Wie lautet dein aktuelles Lebensmotto? Da gibt es einige. Wer sich Sorgen macht, leidet zweimal, ist wohl der aktuell Prägnanteste. Und: Das größte Geschenk an die Zukunft ist, der Gegenwart alles zu geben. Mit welcher Person würdest du gern einmal ein Kamingespräch führen und zu welchem Thema? Mit mir selbst vor 20 Jahren. Thema: Was ist das Leben?  Vervollständige den Satz: „Für mich ist die Multiple Sklerose... “ …der Beginn meines zweiten Lebens. Welche Internet-Seite kannst du zum Thema MS empfehlen? Puh, das Forum der Amsel ansonsten die DMSG-Seiten. Ich selbst meide sowas aber und konzentriere mich auf meine Therapien und mich selbst. Welches Buch oder Hörbuch, das du kürzlich gelesen hast, kannst du uns empfehlen und worum geht es darin? Die Brautprinzessin von William Goldman. Das ist ein Märchen für Erwachsene, es geht natürlich um Liebe. Sehr fantasievoll, sprachgewandt und einfach schön. Verabschiedung Hast du einen Tipp, den Du Deinem jüngeren Ich geben würdest, für den Zeitpunkt der Diagnose? Fliehe bloß nicht wieder in irgendwelche Süchte. Such dir gleich Hilfe und stell dich deinen Dämonen. Möchtest du den Hörerinnen und Hörern noch etwas mit auf dem Weg geben? Das Gleiche, was ich mir selber sagen würde, steck den Kopf nicht in den Sand. Du kriegst alle Hilfe, die Du willst, wenn Du es zulässt. Und vor allem, du bist nicht allein! Wo findet man dich im Internet? Bei der DMSG Niedersachsen gibt es eine Sparte „junge DMSG“. Da ist Alex‘ Blog zu finden.   Vielen Dank, liebe für Deinen offenen Einblicke, gerade auch in die schweren und dunklen Seiten Deines Lebens und toll, wie Du es geschafft hast Dich wieder herauszukämpfen. Weiterhin alles Gute auf Deinem Weg. Bis bald und mach das beste aus Deinem Leben, Nele Mehr Informationen und positive Gedanken erhältst Du in meinem kostenlosen Newsletter. Hier findest Du eine Übersicht zu allen bisher interviewten MS-Patienten.

If you have multiple sclerosis, then you have probably had an MRI. Even though I'm not afraid the walls are closing in on me, I am not excited to get in the tube each year. Lorin shares her experience of getting her brain scanned and what she has to do to get through it. Let's chat it up with this funny lady, teacher, and thriver.  Instagram: @studentsaywhat Instagram: @thrivingoversurvivingpodcast https://thrivingoversurvivingpodcast

If you have multiple sclerosis, then you have probably had an MRI. Even though I'm not afraid the walls are closing in on me, I am not excited to get in the tube each year. Lorin shares her experience of getting her brain scanned and what she has to do to get through it. Let's chat it up with this funny lady, teacher, and thriver.  Instagram: @studentsaywhat Instagram: @thrivingoversurvivingpodcast https://thrivingoversurvivingpodcast

Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, covers how MS patients on Mavenclad are less likely to experience a disease relapse than those on other oral DMTs like Gilenya, Tecfidera, or Aubagio. He also reads “The Double-Edged Sword of Fatigue Medications”, from Beth Ullah's column "Through the Looking Glass". =================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

Dr. Jason Crowell talks with 46brooklyn Research CEO Antonio Ciaccia about how Medicare Part D has hidden the benefits of generic competition for Tecfidera, a disease-modifying therapy for multiple sclerosis. Read the full article at 46brooklyn.com.

Dr. Jason Crowell talks with 46brooklyn Research CEO Antonio Ciaccia about how Medicare Part D has hidden the benefits of generic competition for Tecfidera, a disease-modifying therapy for multiple sclerosis. Read the full article at 46brooklyn.com. To hear the full podcast: https://www.neurology.org/podcast

Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, discusses how treatment with Tecfidera led to fewer relapses in relapsing-remitting multiple sclerosis patients than Aubagio or injectable immunomodulators. Plus, Price reads the column by John Connor, Fall Down, Get Up Again, “It's Just One of Those MS ‘Snow Days'.” =================================== Are you interested in learning more about multiple sclerosis? If so, please visit: https://multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: https://multiplesclerosisnewstoday.com/forums/

Its Time to get serious - BOOO!!!! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/rex-penland/support

You can't control the weather, but you can learn to dance in the rain. And developing resilience teaches you how to dance in the rain. My guest is Dr. Dawn Ehde, a clinical psychologist and professor of rehabilitation medicine at University of Washington Medicine. Dr. Ehde is an expert in understanding resilience, and she's joining us to explain why having resilience is central to improving the well-being of people affected by MS, and how to go about building your resilience -- even in the midst of a global pandemic.     We're also talking about Bafiertam, a lower-cost, FDA-approved bioequivalent to Tecfidera.   We'll share the results of a study of more than 5,000 people who were newly diagnosed with MS -- and not prescribed a disease-modifying therapy for two years following their diagnosis. We'll also explain why that's just wrong!   We'll talk to Suzi Claflin, the academic lead for Understanding Multiple Sclerosis, a free comprehensive 6-week online course that's open for registration right now.   And we'll remind you about where you can register for next week's Black MS Experience Summit.   We have a lot to talk about! Are you ready for RealTalk MS??! We're celebrating 3 amazing years!  :22 The joint ACTRIMS-ECTRIMS meeting took place last weekend and that means a bonus episode of RealTalk MS is coming  2:38 Bafiertam is now available in the United States    4:44 Study shows that 2/3 of people newly diagnosed with MS in the U.S. are not prescribed any disease-modifying therapy for 2 years following their diagnosis  5:43 Understanding Multiple Sclerosis, a free online course, is open for registration. My interview with Suzi Claflin  8:44 The Black MS Experience Summit takes place next week  21:51 My Interview with Dr. Dawn Ehde  23:43 Share this episode  40:32 Donate to the National MS Society COVID-19 Response Fund  40:52 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/159 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Give RealTalk MS a Rating and Review National MS Society's Ask An MS Expert Video Replay What You Need to Know About Coronavirus (COVID-19) Bafiertam STUDY: A Novel In-Home Digital Treatment to Improve Processing Speed in People with Multiple Sclerosis: A Pilot Study STUDY: Treatment Patterns and Comorbid Burden of Patients Newly Diagnosed with Multiple Sclerosis in the United States "Understanding Multiple Sclerosis" Online Course Registration National MS Society Black MS Experience Summit National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 159 Guests: Dr. Dawn Ehde Tags: MS, MultipleSclerosis, MSResearch, MSSociety, UWMedicine, RealTalkMS Privacy Policy

Disease-modifying therapies are the cornerstone of any effective MS treatment plan. But with more than 20 approved prescription medications available today, the choices can seem overwhelming.   People living with MS have questions -- Do you start out with a safe but less effective medication, or do you hit MS hard with a high-efficacy drug that may carry more risks? When is the right time to consider switching medications, and how do you have that conversation with your neurologist? Do things like other health conditions affect which disease-modifying therapy you're on? And what about aging?    My guest is Dr. Scott Newsome, an Associate Professor of Neurology, and Director of Neurosciences Consultation and Infusion Center at Johns Hopkins Medicine. Dr. Newsome also serves as the Co-Director of the Multiple Sclerosis Experimental Therapeutics Program at Johns Hopkins.  And I'm devoting this entire episode of RealTalk MS to taking a deep-dive into disease-modifying therapies with Dr. Newsome.   We'll also give you the details about two major events taking place this week -- the MSVirtual2020 conference and the Keep Moving Forward benefit celebrating the MS Movement.   We have a lot to talk about! Are you ready for RealTalk MS??! ECTRIMS + ACTRIMS = MSVirtual2020  :24 Don't miss Keep Moving Forward  1:08 My Interview with Dr. Scott Newsome  1:38 Share this episode  33:06 Leave a rating & review  33:26 Please Support the National MS Society COVID-19 Response Fund  34:45 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  realtalkms.com/158 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Give RealTalk MS a Rating and Review National MS Society's Ask An MS Expert Video Replay National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 158 Hosted By: Jon Strum Guests: Dr. Scott Newsome Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Tecfidera, Ocrevus, Kesimpta, Copaxone, Gilenya, RealTalkMS Privacy Policy    

Multiple Sclerosis News Today's columnist, Jenn Powell, discusses Mylan's launch of a Tecfidera generic in the United States. Plus, Multiple Sclerosis News Today's multimedia associate, Price Wooldridge, reads Jessie Ace's column, DISabled to ENabled, on the things people say when you tell them about your multiple sclerosis diagnosis. ===================================== Treatment for Relapsing MS Progression | MAYZENT® (siponimod) Read about MAYZENT, a once daily pill that can significantly slow down disability progression in people with relapsing MS. See full prescribing & safety info: ChangesInRMS.com ===================================== Are you interested in learning more about multiple sclerosis? If so, please visit: multiplesclerosisnewstoday.com/ ===================================== To join in on conversations regarding multiple sclerosis, please visit: multiplesclerosisnewstoday.com/forums/

Whether you call it brain fog, cog-fog, or you don't happen to have a name for it, cognitive dysfunction affects more than half of all the people with MS.   Joining me once again is Dr. Meghan Beier, a Rehabilitation Neuropsychologist and Assistant Professor of Physical Medicine at the Johns Hopkins University School of Medicine. Dr. Beier specializes in cognitive rehabilitation and neuropsychological assessment and intervention and she's back to answer more of our questions about managing the cognitive issues typically associated with MS.     We're also talking about Kesimpta (ofatumumab), the high-efficacy b-cell disease-modifying therapy that just received FDA approval.   We'll tell you about the case study of a patient who lost their vaccination immunity to the Varicella-Zoster virus (causes chickenpox & shingles) after receiving their first Ocrevus infusion.   We'll give you the details about the generic for Tecfidera that's going to be available in just a few weeks. And we'll tell you why the U.S. Department of Justice is suing Teva, the manufacturer of Copaxone.   We'll share all the details and let you know where to register for the National MS Society's Black MS Experience Summit.   And we'll tell you how a research team from Facebook (yup -- you read that right!) and New York University is hoping to speed up MRI exams.   We have a lot to talk about! Are you ready for RealTalk MS??! We're trending!  :22 FDA approves ofatumumab (Kesimpta) for treating relapsing-remitting MS and active secondary-progressive MS  3:53 Patient loses vaccination immunity for Varicella-Zoster virus after Ocrevus infusion    5:44 Generic for Tecfidera will be available in September  8:25 U.S. Department of Justice sues Coaxone manufacturer, Teva  9:18 National MS Society to convene the Black MS Experience Summit  12:24 Facebook & New York University research team develop artificial intelligence technology that will speed up MRI exams  13:26 My Interview with Dr. Meghan Beier  15:48 Share this episode  29:38 Leave a rating & review  29:58 Please Support the National MS Society COVID-19 Response Fund  30:22 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email:  https://realtalkms.com/156 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.comPhone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com Give RealTalk MS a Rating and Review National MS Society's Ask An MS Expert Video Replay What You Need to Know About Coronavirus (COVID-19) Varicella-Zoster Immunity Loss in Multiple Sclerosis Patient Treated with Ocrelizumab National MS Society Black MS Experience Summit National MS Society COVID-19 Response Fund Join the RealTalk MS Facebook Group Download the RealTalk MS App for iOS Download the RealTalk MS App for Android Give RealTalk MS a Rating and Review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 156 Hosted By: Jon Strum Guests: Dr. Meghan Beier Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Tecfidera, Ocrevus, Kesimpta, Ofatumumab, RealTalkMS Privacy Policy

Name & Vorstellung Ich bin Anne, besser bekannt als »Annie« vom Instagram-Konto »positive_ms_power_annie«. Obwohl ich auf dem Papier schon 42 Jahre alt bin, fühle ich mich eher wie 25, manchmal auch wie 85. Ich bin mit meinem »persönlichen Apotheker« verheiratet und habe einen 15-jährigen Sohn. Diagnose Multiple Sklerose Seit Oktober 2005, vorangegangen waren zwei Schübe. Erst nach dem Wechsel des Neurologen wurde die richtige Diagnose auf MS gestellt. Vorher hieß es nur »Sehnerventzündung, Trigeminusneuralgie«. Erfahrungen mit Basistherapien Ich habe mich 13 Jahre mit Copaxone gespritzt, davon zwölf Jahre täglich und das letzte Jahr dreimal wöchentlich. Wobei in dem letzten Jahr fünf Schübe auftraten und dann im September 2017 der Wechsel zu Tecfidera erfolgte. Anfangs hatte ich heftige Nebenwirkungen: Übelkeit, sowie Magen- und Darmkrämpfe, dreimonatige Erkältung, Gürtelrose im Gesicht und am Kopf, die eine Woche lang im Krankenhaus mit Infusionen behandelt werden musste. Danach entwickelten sich Miniwarzen. Die Therapie möchte ich jedoch nicht beenden, da die Schübe unter dem Medikament weniger intensiv waren und ich davon überzeugt bin, dass die Therapie gut wirkt. Mein Lebensmotto »Das wird schon alles irgendwie gut werden.« Mein schlimmster Tiefpunkt Als ich fünf Schübe innerhalb von 18 Monaten hatte und absolut keine Kontrolle mehr unterhalb des Bauchnabels. Damals war ich auf einen Rollstuhl angewiesen, komplett inkontinent, musste einen Katheter nutzen und mein damaliger Ehemann verkündete mir während der Kortisonstoßtherapie im Krankenhaus, dass er sich scheiden lassen will. Mein 1,5 Jahre alter Sohn war meine größte Motivation, schnell meine Selbstständigkeit zurückzuerlangen, damit ich um das Sorgerecht für ihn kämpfen konnte. Mit ganz viel Physio- und Ergotherapie sowie weiteren Maßnahmen ging es recht schnell bergauf. Mehrere Neurologen haben mir versichert, dass wenn mein Körper nicht schon immer an viel Sport und ständiges Lernen sowie Sich-Umstellen-Müssen gewöhnt wäre, ich mich nicht so gut und schnell von diesem Schub erholt hätte. Dennoch wurde ich in der Folge berentet und brauchte zehn Jahre, um diese Tatsache zu akzeptieren und anzunehmen. Da ich nie wieder auf Hilfe angewiesen sein möchte, ist es mir sehr wichtig, alles dafür zu tun, dass mein Gehirn viele verschiedene Reize bekommt, um aktiv gegen das Fortschreiten der MS anzugehen. Deshalb treibe ich täglich Sport (als ehemalige Aerobic-, Step Aerobic und Thai Bo Instructor eine Selbstverständlichkeit) um meinen Körper zu kräftigen, mache Step Aerobic, dehne mich und fahre Rennrad. Außerdem lese ich viele Bücher und Zeitschriften in Deutsch, Englisch und Polnisch, schaue mir Youtube Videos an, und höre Podcasts sowie Talks auf Spotify. Das Ganze ergänze ich mit einer gesunden Ernährung. Ich koche sehr gerne frisch, saisonal und regional, und backe mein Dinkelschrot- und Müslibrot selbst. Meine Symptome habe ich recht gut im Griff. Gegen die Blasen- und Darmentleerungsstörungen nehme ich zwei verschiedene Medikamente. Regelmäßig merke ich die Fatigue, kognitive Störungen (temporär schlechte Konzentration und Wortfindungsstörungen), neuropathische Schmerzen, Missempfindungen, Sensibilitätsstörungen, das Lhermitte-Zeichen, das Uhthoff-Phänomen, und habe Probleme meine Temperatur zu regulieren. Da ich schon immer sehr aktiver Mensch bin, versuche ich auf meinen Körper zu hören, mich nicht zu überfordern und mir genügend Pausen zu gönnen. Mein größter Traum Einmal intensiv Australien zu bereisen. Davon träume ich bereits seit der Mittelstufe. Wichtigste Internetquellen - MS-Perspektive - der Multiple Sklerose Podcast - @doctor.gretchen - auf Instagram - F.U.MS Germany - auf Facebook Buchempfehlungen »Drei Irre unterm Flachdach« von Bastienne Voss »Erstgeborene. Über eine besondere Geschwisterposition«, Jirina Prekop »Hardwiring Happiness. How to reshape your brain and your life«, Rick Hanson »Die Pest«, Albert Camus (Hier geht es zu meiner Besprechung vom Buch auf meiner zweiten Webseite www.nelehandwerker.de) Meine Tipps für MS-Patienten Macht euch nicht verrückt. Lasst euch selbst und eurer Familie Zeit, das »Neue Ich" zu akzeptieren. Erklärt eueren Kindern die MS kindgerecht und zeigt ihnen, wie ihr euch spritzt, um ihnen die Angst vor Spritzen wegzunehmen. Lebt und genießt euer Leben. Riskiert auch mal was. Keiner weiß, was in den nächsten fünf Minuten passiert. So kannst du Annie erreichen Instagram: https://www.instagram.com/positive_ms_power_annie/ Viel Spaß mit der Folge und beste Gesundheit wünscht dir, Nele Mehr Informationen und positive Gedanken erhältst du in meinem kostenlosen Newsletter auf www-ms-perspektive.de. ---------- Im MS Perspektive Podcast stelle ich dir meine Sichtweise auf die Multiple Sklerose vor und wie du das beste aus der Diagnose machen kannst. Denn ein schönes und erfülltes Leben ist auch mit einer chronischen Autoimmunerkrankung wie Multipler Sklerose möglich. Hier findest du Informationen und Strategien, wie du aktiv Einfluss nehmen kannst. Ich will dir Mut machen und zeigen, was du alles selbst in der Hand hast. Dazu veröffentliche ich Solobeiträge mit meinen Erfahrungen zur Basistherapie, zur Ernährung, zum Reisen, Arbeiten und der Familienplanung. Außerdem interviewe ich Experten zu verschiedensten Themen rund um ein Leben mit MS. Und einige Folgen dienen der puren Entspannung, die in jedem Leben einen wichtigen Platz einnehmen sollte.

Important Listening Nothing in this, or any other episode, constitutes medical advice, Also, a quick summary of the latest Covid advice for people with MS   Copyright: Bron Webster 2020

Hi all, I'm back today talking about the approval of Avexis/Novartis' gene therapy for spinal muscular atrophy, Zolgensma. I also talk about how I came to a conclusion about whether or not I should short Biogen.Correction: The upcoming BIIB098 readout is not a pivotal study but a head-to-head against Tecfidera. Also, the partnership company is Alkermes, not Alkemes.Follow me on twitter @matthewlepoire www.breakingbiotech.com this is not investment adviceSupport Breaking Biotech by donating to the tip jar: https://tips.pinecast.com/jar/breaking-biotech

Über vier Jahre habe ich meine Multiple Sklerose mit Tecfidera behandelt. Nun traf ich die Entscheidung, von der Schulmedizin zu einer hochdosierten un ärztlich überwachten und begleiteten Vitamin D-Hochdosentherapie zu beginnen.Diese alternative Therapie nennt sich Coimbraprotokoll, und ob man nun daran glaubt oder nicht, das möchte ich jeder Person selbst überlassen. Im heutigen Podcast erzähle ich dir erstmal, wie ich mich ans Tecfidera gewöhnt habe und wie es mir damit ging, und dann, warum ich mich nun für das Coimbraprotokoll entschieden habe. Was ist das? Auf welchen Studien basiert es? All das und noch viel mehr wird in diesem Podcast ausführlich besprochen. Weiterführende Infos zu Tecfidera: https://bit.ly/2xzXdYk Weiterführende Infos zum Coimbraproktoll inkl. Liste der behandelnden Arzt*innen: www.coimbraprotokoll.de und https://bit.ly/2xyhRZ4 Buch zum Coimbraprotokoll: https://amzn.to/2Le4Pl9

Thank you for joining us for our 2nd Cabral HouseCall of the weekend!  I’m looking forward to sharing with you some of our community’s questions that have come in over the past few weeks… Let’s get started! Christa: Hi Dr Cabral, Thank you for this great podcast. I've been listening to daily since I heard you on another podcast about a month ago. I am 42 years old. 5' 7" 130 lb small boned typical type A personality so primarily Vata. I was diagnosed with MS about 11 years ago. I immediately decided to start exercising and eating healthy to give my self a sense of control over a condition I was told I had no control over. I currently workout 5 days a week as well as walk daily and am starting to work yoga back into my routine. I eat a primarily plant based diet. I gave up grains and dairy in 2017 when I decided to stop listening to my doctors who had me on prescriptions for migraines, fatigue, and bladder control on top of the Tecfidera for the MS. All my issues were blamed on MS but after changing my diet I successfully got off all but the Tecfidera. I still have some gut based issues such as bloating, the occasional headache that comes along with flushing (a side affect of the Tecfidera??) I'd like to get off the Tecfidera and figure out what is causing the rest of my gut based issues. I am wondering where to start. Since I had so much success with my recent diet changes I've been wanting to get a food sensitivity test done to see what else could be an issue. One more complication, I had breast implants done 6 months before my MS diagnosis. Not a single doctor has suggested a correlation but recently I've seen a lot of information that suggests this surgery could be the root cause of the MS. I plan on getting explant surgery in the next 12 months so I am not sure what I can do in the meantime and what I should wait to do after the surgery. Thank you for taking the time to read my long email. I appreciate any suggestions and advise you can give. Christa  Hill: Hi Dr. Cabral, Firstly, your podcast has seriously changed my life and I appreciate all your sage advice. My inquiry is regarding alcohol use & SIBO. I am 29 and My GI diagnosed me with SIBO after taking a breath test and I’ve since began the Candida Protocol. I was an athlete in High School & College and had to stick to a strict diet consisting of veggies, only fish, no sweets, and occasional starches. I’ve maintained this diet to present day. I was a pretty heavy drinker in my early 20s and continued to drink on the weekends up until my diagnosis with SIBO. Can alcohol use cause SIBO ? And/or what is the relationship between alcohol use and SIBO ? Thanks! Katie: Can you talk about crohns on a show? Specifically what are the best and worst foods to eat & why? My husband has had a terrible quality of life for the last 15 years or so when it comes to pain & flare ups. He gave up on his medicine & medical doctor after coming to the understanding that what he was taking led to cancer (Cimzia) - he gets by with drinking ensure and naked juice as his main nutrition, toast or cream of wheat for Breakfast and chicken with Mac n cheese or rice as dinner - this is his typical diet for about 6 years) He believes at this point in his journey that veggies will put him in the ER (he’s not tried it) and that milk is one of the only things he can tolerate. I think he needs re education but I’m not sure where to send him (yes, I’ve tried getting him to listen to your podcast) thanks for any thoughts! I owe so much to you in my own personal health journey Amber: Dr. Cabral Where to begin how grateful I am to have stumbled across your podcast about a year ago now! Since then I have been able to implement some of your protocols. Despite lifestyle changes I continue to suffer from cystic acne, with occasional headaches, and brain fog. I am 31 yr female, 5’9 160 lbs, I lift weights regularly with yoga & mobility work. I have had acne since about the age of 15. I have let my skin affect all aspects of my life, and have never felt comfortable in my own skin. I struggle with anxiety because of this. I wrote to you before and now again after I found out my dermatologist of 15 years was now retiring, and despite my many years of commitment to healing my skin naturally, and through my efforts to heal my skin through elimination diet, 21 day detox, and eliminating alcohol, caffeine, sugar and grains I still struggle with my skin. As a personal commitment to myself, I chose to take Accutane. In my last resort and desperation to live life without being at the mercy of how my face looks. I started this the beginning or December 2017, and not even a month in I am beginning to feel heavy pressure in my head, along with mild hair loss, and recently noticing some g.i. upset. Terrible pain in my stomach, clay reddish colored stool, and orange tinge urine. However, I am also just recovering from some stomach flu so I don’t know if this could even correlate with the Accutane. This is extremely concerning, going against my beliefs and values in treating your body holistically, I have resented myself and this decision. I would like to reach out to you one more time, in hopes for your recommendation on where to go from here? I believe my acne is mostly hormonal, I only break out on my face, my skin otherwise is beautiful. what alternative supplements beside DIM do you recommend? If acne is due to dirty blood, how do I begin? What is your input on the drug Accutane and its uses for acne? Despite my horrible side effects, I’m already noticing my skin clearing which is more frustrating. I’m intending on continuing the daily protocol, and loved the way I felt while on the 21 day! Also I believe I must have some food sensitivities, but I noticed more when I was fasting that my ears would become beet red, and become really warm lasting anywhere between 20-60 minutes! This also happens when I eat, I cannot correlate this to one food. However, is definitely happening more frequently. This reaction began before my course of Accutane. Thanks in advance for all the differences you make in peoples’ life’s each day, it’s truly amazing what you do! -Amber Melissa: Hello, My name is Melisa and I am writing to you regrading my husband Nathan who had an injury 4 years ago & is still suffering ongoing headaches 2-4 times per week. We have seeked medical advice from neurologist consultations on several occasions but have been unsuccessful in finding answers or a solution. Please find Nathan's story below of injury and where he is at today. In 2012 we were living in Far North QLD and went for a holiday to Southern WA. Nathan was going out for a surf after 4 months of not surfing. After Nathan got out of the surf straight away he felt like he had an earache (nothing unusual had happened in the surf). We were having to fly in 3 days time & Nathan was concerned about the earache on the plane, so we decided to see a doctor. The doctor advised Nathan he had an earache & also mild conjunctivitis (his eye was a bit droopy and sticking) & prescribed medication for both of these issues. Nathan commenced the treatment. Three days later we flew home to Far North QLD. When we got home Nathan had a headache & the headache went on for 1 week before the left side of his face & head had a funny sensation & he felt congested in his nose. He decided to go to the doctor, the doctor also found Nathan's left eye had dropped & his left pupil was unresponsive. We only have minor medical treatment where we lived so the doctor immediately put Nathan on a flight to Cairns. Upon arrival Nathan had scans & was told he had a dissected carotid artery. He was prescribed medication & advised to have another scan in 1 years time. Prior to the incident Nathan had also had a chiropractic appointment where his neck was manipulated. So we understand the incident was trauma caused by one of these two events. At the anniversary of the incident, Nathan had another scan & saw a Neurologist in Cairns. We were advised the scan showed the artery had completely healed & was back to normal & they were happy with how the artery looked. We advised the Dr, Nathan was still getting regular headaches (at least 2 per week) eye is still drooping when tired & occasionally getting a slight ear ache. The Dr advised to take medication to prevent/relief headaches & advised although the artery has healed perhaps the artery is irritated & is causing symptoms & internally could still require further time to heal & hopefully within time symptoms will stop. However Nathan did not need any further scans or monitoring as artery had healed. 2 years later the headaches were still occurring 2-4 times per week. So Nathan decided to see another Neurologist to get another opinion. Unfortunately the Neurologist could not help and advised Nathan should not be getting headaches. Nathan then decided to try another avenue & booked in to see a Vascular surgeon. Again the surgeon was unable to help, but after further persistence the surgeon advised he would send Nathan's latest 2015 MRI scan away to a radiologist who specialises in vascular imagery. A few months later we received a letter advising the radiologist had viewed Nathan's scans and found an aneurysm on the opposite side to the original dissected artery also. Again this would need yearly scans to monitor them. After not receiving many answers from the medical industry, we decided as a family to change our lifestyle to see if this had an effect. Nathan stopped working to live a stress free / simply life. We also changed Nathan's diet to be a whole foods plant based diet & eliminated all coffee & alcohol. Nathan has been eating a high raw plant based diet based for 3 years now in hopes this would help heal his arteries & reverse the aneurysm. Unfortunately his headaches are still the same to date 2-4 per week & he takes maxi-gesic & naproxen when they are at their worst (2-4 per week) I am writing to you, after listening to your podcast with Melissa Ambrosini which gave me with renewed hope that we need to keep searching for an answer. We live in Australia, I’m wondering if there is anyway to do testing with you to find the best way of eating for Nathan and a solution to his on-going debilitating headaches. Thank you, Kind regards, Melisa. Thank you for tuning into this weekend’s Cabral HouseCalls and be sure to check back tomorrow for our Mindset & Motivation Monday show to get your week started off right! - - - Show Notes & Resources: http://StephenCabral.com/737 - - - Get Your Question Answered: http://StephenCabral.com/askcabral   

[intro music]   Host – Dan Keller Hello, and welcome to Episode Ninety of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m Dan Keller.   Welcome to the weird world of the U.S. pharmaceutical market. A few outrageous cases of drug price gouging have made the headlines, but in multiple sclerosis, a more serious concern is the steady annual rise in cost of all disease-modifying therapies, or DMTs. So says Dr. Daniel Hartung, a researcher at the Oregon State University/Oregon Health and Science University College of Pharmacy. In a recent study, he found that MS drug prices over time outpaced both inflation and similar biologics. It’s not just the new drugs. As each more expensive DMT comes to market, the prices of older drugs also race to catch up. It’s affecting the drugs available to patients and causing other concerns.   Interviewer – Carol Morton Can you tell me what questions you were asking and why?   Interviewee – Daniel Hartung Sure. So the study that we did had its origin after having some conversations with some neurologists at OHSU about increasing frequency of seeing their patients facing larger and larger, not only cost sharing and copays from the insurance companies for drugs for MS, but also increasing restrictions, typically from insurance companies in kind of what medications they were supposed to take first prior to perhaps failing one, then going to another medication for MS. And so this is all kind of happening in the context of what they were seeing as just higher prices for some of these medications.   And so what we decided to do is…no one's really done this…is look at in a systematic way the trajectory of pricing for MS drugs, essentially since their approval until we went through the end of 2013. And to look at what the just general trend was, try to figure out if there were certain specific factors that were associated with higher prices over time, like the approval of newer agents, things like that. That was kind of the general objective of the study.   MSDF And then how did you go about conducting this study? Is it hard to find that data?   Dr. Hartung It can be. So I'm fortunate to have access to some data set that has longitudinal pricing data for pharmaceuticals for the past 30 years or so. And so from my perspective, it wasn't difficult. But essentially we used this data set that collected average wholesale price, as well as wholesale acquisition cost, so kind of the two usual, most common (I'll call them) sticker prices for drugs. And so this data set for all medications, it kind of tracked pricing of medications over time. And so that was the core data set for our analysis.   MSDF And so you pulled the multiple sclerosis disease-modifying therapies out of that. How many did you look at?   Dr. Hartung So in our study we looked at 11 medications for MS. They included the three what are typically called platform therapies that have been on the market for about 20 years now. Those include Avonex, Copaxone, and Betaseron, and just followed them through time, through the approval of several other new agents, like Tysabri. And then there's in the last five to six or seven years, the FDA has approved several agents that can be taken orally, Gilenya, Aubagio, and Tecfidera now. And there was a couple other kind of miscellaneous agents that were kind of variants of the interferons and things like that.   MSDF And then what did you find?   Dr. Hartung Well, there are several interesting things, but I think one of the most striking things is that the prices for the platform therapies, Avonex, Betaseron, and Copaxone, were pretty stable for at least 10 years from their approval in early to mid-90s. And then, essentially what we observed is that new agents that came on the market, starting with Rebif in about 2001, came out, and they were usually priced about 20% to 30% higher than the existing therapies. And what we observed is that when these new agents came out or approved, that these higher prices, the cost or the price of kind of the platform therapies quickly escalated to almost match the price of the newer agents that were approved. And this pattern kind of repeated itself and actually became more intense when the newer oral agents came on the market in the last five or six years.   So the cumulative effect of that is in the early 2000s, Copaxone, Betaseron, and Avonex were priced about $10,000 to $15,000 a year. And at the end of our study, all of the agents that are currently approved were priced between $50,000 and $60,000 per year. And so we tried to quantify kind of the rate of increase and compare that with other kind of benchmarks: inflation, prescription drug inflation. What we found is that the price increase for those agents was well above what you'd expect for not only just general inflation, but also prescription drug inflation.   MSDF MS drugs, the cost of all of them, not just the new ones, are increasing at a rate higher than any other drug category?   Dr. Hartung In addition to looking at kind of standard metrics of inflation, we compared the price increases for the platform therapies to what we considered kind of comparable biologics. So we looked at a class of medications called tumor necrosis factor inhibitors, which are used for immunologic conditions like rheumatoid arthritis. And what we found is that the price increases for the platform therapies for MS increased substantially and significantly above price increases for those medications for the tumor necrosis factor inhibitor. So from our study, from our perspective, prices increased higher than they did for these TNF inhibitors.   We haven't really compared them across other classes of drugs, but there are some new publications that have looked at price increases for other agents, such as in other classes like insulin, drugs for diabetes, and cancer agents as well. The numbers are slightly different, but the trajectories look pretty similar. So in the last, you know, 10 years, there's been almost it seems like a logarithmic increase in the price of many of these agents and classes.   MSDF So is this a case of a system that has incentives that maybe aren't as well matched to patient needs as they should? What's going on here?   Dr. Hartung I mean, that's a good question. Definitely there's a system. The market-based system for pharmaceuticals in the United States is incredibly dysfunctional in that it's very dissimilar from any other kind of consumer market for technology, phones, cars, things like that, where you typically see prices go down after a while. And you don't see that in health care or in drugs. You see just prices increase. And so there's a dysfunction that just kind of is core to the economics of health care.   And then I think there is an element of pharmaceutical industries pricing these agents essentially what the market will bear. Now my opinion is that a lot of the aggressive increases in price were initially seen with some of the cancer agents. And so I think that in that field there is a kind of pushing of the envelope for many anti-cancer drugs that's now has proliferated to other classes of drugs, including MS agents.   The other element that's kind of unclear and adds to the murkiness to this is that, you know, our study and other studies that have looked at what I'm calling pricing of the agents use average wholesale or WAC and with some sort of adjustments for rebates or discounts. So typically third party payers or pharmaceutical benefits managers will negotiate with pharmaceutical industry to lower the cost of the agent for the payer. But all that information is typically proprietary, and so it's really difficult to know what the actual cost of the medication is, unless you're paying cash. If you're paying cash, then the cost is going to be pretty close to the price that's set. So people who don't have insurance are paying the most, and the people with insurance, Medicaid, any sort of governmental insurance, they're paying typically AWP minus a certain proportion or WAC plus a proportion percentage essentially based on the rebate that they get.   So that adds a little bit of kind of uncertainty. Pharmaceutical industry may come back to say that, you know, we're giving pretty good discounts on certain medications in certain payers, but from the data we have and the pricing data, there's just been this aggressive increasing in prices. And we don't know if it's being mitigated by increasing rebates and discounts over time. So it's complicated.   MSDF What do you hope people will do with this information? It does sound like a complicated system that's almost unapproachable for the individual patient or individual doctor. What can people start doing now? Where does the responsibility or responsibilities lie?   Dr. Hartung You know, I think that the data we generated in our study has been useful for some of the advocacy groups in the multiple sclerosis community. So the National Multiple Sclerosis Society has been using it to try to, you know, advocate or perhaps political reforms or some other meaningful reforms in kind of how these things are reimbursed, things like that. Drug prices has been in the news quite a bit over the last several years, and now even more with the election season in full tilt. And so I think a lot of the candidates are talking about potential solutions to the issue.   From the patient's perspective, they're in a real quandary in a sense that even a sharp move with the Affordable Care Act to a lot of high deductible, high cost sharing plans where if your monthly cost of a MS agent is $5,000, you pay 20% of it until you hit your deductible. You know, that's $1,000 at the pharmacy, and that's a pretty big out-of-pocket cost that you face. So I think that there's some, you know, movement in the advocacy groups to try to…especially working with insurance companies to make sure that access is open because these medications are incredibly individualized. And there's not really good predictors of who will respond to each type of medication, and they're all different. Some of them are administered subcutaneously, intramuscularly, orals, and so there's some patient preferences that fall into play here as well as the price. And so I think there's been some movement and some discussion making sure that access to all the agents is relatively easy for patients.   But from a solutions to the pricing situation, you know, I think we're still kind of in discussion phases about what we can do as a country to kind of deal with this issue because it's not exclusive to the MS drugs.   MSDF So what's next with you? Are you following up on this?   Dr. Hartung So from our perspective, the group that I worked with, the two neurologists' project, we just submitted a grant, well, it was in January, that we hope to be competitive and hope to get that's looking at how these high drug prices actually affect patients in terms of their medication taking and potentially adverse outcomes because they're not taking their medication. Either they're hitting access restrictions from insurance companies or they just can't afford or have problems with the cost sharing or something like that, and so trying to quantify how this is affecting patients. And so from a research perspective, I think that's kind of our next move.   My colleagues, my two neurologist colleagues, they're really active in kind of speaking with representatives at the state about the issue, bringing it to increased visibility from our elected officials as well as making sure that the MS Society is aware of kind of the current status of the pricing trajectory. So we've been updating our graph that we published as new agents come online and things like that.   MSDF Can you give us a couple of the updates you've made since the study?   Dr. Hartung They haven't been dramatic, but there's been a couple new agents that have been approved. And I guess most notably is that the first generic drug for MS was approved, I believe, last April. So a generic for Copaxone came online. I think there's two manufacturers of it. When it came online, there was one. And so I think it was priced just modestly lower than the brand name Copaxone. But something interesting also just dealing with Copaxone, which is the number one MS drug in terms of sales, so when Copaxone lost its patents and lost its kind of patent disputes, in preparation for that, Teva released a different formulation of Copaxone.   So Copaxone is traditionally a daily injection. And so they released a three-times-a-week higher strength injection and basically switched everyone from the once-a-day to the three-times-a week 40-mg injection. And so I think a large proportion of patients who were originally on the once-daily Copaxone were switched to the 40-mg three-times-a-week Copaxone. So that really to some extent mitigated if there's any sort of savings due to this new generics in the field, kind of really mitigated any kind of savings due to the new generic as most people are now on the 40-mg three-times-a-week product. And the generic is not substitutable for the 40-mg three-times-a-week product. So that's a very common tactic in pharmaceutical industry approach to try to like sustain their franchise with a particular drug that's going off patent.   But the big questions are the ones that don't have a good answer. Essentially, what do patients do about this? What do we do as a society to deal with this issue? And you know, there's been proposals that have been put out by different elected officials and other folks about, you know, we should allow Medicare to aggressively and directly negotiate with pharmaceutical industry on price. We should allow importation of medications from other countries, similar industrialized countries like Canada. So the United States pays by far and away the highest prices than any other country in the world. And so many people think that we should be able to import these drugs that are the same drugs that are going to Canada into the United States. You know, some people suggest that there should be some sort of forms of price control. You know, maybe medications shouldn't be allowed to increase 10% a year or something like that.   And so all of these are being kind of discussed and played out and the pros and cons are weighed. And whenever you talk about limiting price increases, the usual response you get from industry is that any constraint on the amount of money that they're able to make and the profits that they're able to make for their shareholders is going to have some sort of effect on kind of future innovation potentially. Whether that comes to bear or not is unclear, but that's usually the number one response you get is that we need to have these high profits in place because it's an incredibly risky endeavor that we're doing. Only a very small proportion of drugs that are under development actually make it through the developmental process and are approved and make it to market. So any constraint on profits is going to have an effect in terms of future innovations and future breakthrough medications and things like that. Incentives are a big…they are real. And so that is something that needs to be weighed carefully in kind of any solution, essentially. I don't think it's the best solution, but just people are talking about a wide variety of things, I think.   MSDF I appreciate your raising all these issues and going through the study. Is there anything else that I haven't asked that you wanted to add or emphasize as take-home lessons? Something to mitigate the rage, I don't know… [laughter]?   Dr. Hartung Yeah, well I mean there's been a lot with all this, you know, the Valeant Pharmaceutical issue and the other company, Martin Shkreli guy who's castigated for increasing the price of this drug for toxoplasmosis by like 5,000% and buying the company and jacking up the price. That's a separate phenomenon of what is happening. But I think the outrage over that type of exploitation of the dysfunctional pharmaceutical market kind of masks and kind of hides the other issues that are happening on a consistent and aggressive basis in terms of just regular 6% to 10% increases in price on a year-to-year basis for drugs that a lot of people use, like drugs for diabetes or MS products, cancer agents, things like that. And so, you know, you have these really highly visible cases of really dramatic increases that are kind of morally outrageous. They draw your attention from the real and kind of moderate but aggressive and year in, year out, increases that are seen across the board in a lot of different agents. And that's where our focus should be essentially.   MSDF That's helpful. Well, thank you so much.   Dr. Hartung Yeah. My pleasure.   [transition music]   MSDF Thank you for listening to Episode Ninety of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Carol Cruzan Morton. Msdiscovery.org is part of the nonprofit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is Vice President of Scientific Operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   [outro music]   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.   For Multiple Sclerosis Discovery, I'm Dan Keller.

[intro music]   Hello, and welcome to Episode Forty-Three of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with Dr. May Han, who discusses issues related to following patients with clinically isolated syndrome. But first, here are some new items on the MS Discovery Forum.   We recently posted an article on a surprisingly strong association between a certain gene variant and non-response to interferon beta in people with RRMS. The study is a meta-analysis of three independent cohorts in Italy, France, and the U.S., and it comes from the labs of Philip De Jager and Filippo Boneschi. You’ll find this article by clicking first on News & Future Directions and then on New Findings.   This past week we published the latest in our series of data visualizations. This month’s visualization is a series of word clouds illustrating how key terms in the MS clinical-trial literature have changed between 1993 and 2014. To find this visualization, first click on Research Resources, then on Data Visualizations, and then on Word Cloud.   According to our curated list of the latest scientific articles related to MS, 30 such articles were published last week. To see last week’s list, go to msdiscovery.org and click on Papers. We selected one of those papers as an Editors’ Pick. It’s study of the association between depressive symptoms and walking ability in people with RRMS.   Are you attending the annual meeting of the Consortium of Multiple Sclerosis Centers in Indianapolis this week? If so, please come visit us at the Accelerated Cure Project’s booth. We’ll be demonstrating some of our latest data visualizations along with other features of the MS Discovery Forum. You’ll find the booth in the hallway close to the main entrance to the exhibit hall, and we look forward to meeting you.   [transition music]   Now to the interview. Dr. May Han is an assistant professor in Neurology and Neurological Sciences at Stanford University. I spoke with her about following patients with clinically isolated syndrome, as well as her approach to patients with MS across the course of their disease. But first, she addressed some unmet needs in MS.   Interviewer – Dan Keller Dr. Han, you told me that we’re good at the diagnosis of MS in general, but still there’s a vast area that we don’t know about. What are some of those unmet needs?   Interviewee – May Han So it’s been over 150 years since Charcot first described multiple sclerosis, and I have to say that we have come a long way in understanding and treating this disease. But as you have mentioned, there are still areas where we have no idea, there are gaps in our understanding of this disease. One of these areas that is clinically very relevant and is very challenging is in the day and age where we have a dozen disease-modifying therapies for MS patients, and yet we don’t have a good way, a scientific way of selecting the most effective therapy for a particular patient is what I find quite challenging in the clinics.   MSDF What gives you clues or how do you approach this essentially algorithm of deciding where to begin and how to move on to other medications if the first one’s not working well?   Dr. Han Currently, of course, we follow the guidelines. So for any relapsing-remitting patients, our logic is to go for the safest medication that we think are going to be most effective, which means we go with the first-line therapies. So we have the convention ABC drugs such as beta-interferon family of therapies and glatiramer acetate, plus the newer oral medications such as Tecfidera and fingolimod or Gilenya that we use for the first-line therapy; not a whole lot of science in choosing these medications for a particular patient, but what we would do is initially we would educate the patient about these disease-modifying therapies and then select the medication together with the patient to see what would be most appropriate and the patient could be most compliant for a particular medication.   To give you an example, certain patients have aversion to needles, in which case we go with the oral medications. We also have in mind what the preference of the patient, such as whether they could be able to follow it through for years on end with a particular medication. Ideally, we would like to have zero relapses or MRI activity when a patient is on a disease-modifying therapy, but as we all know none of these medications are 100% foolproof, and they can still have some degree of MRI activity or infrequent relapses on this medication. However, if a patient is clearly not responding to a therapy either in terms of not being compliant, being intolerant to the mode of administration, or if they’re having worsening disease activity, we would decide to go on to stronger medications or second-line of therapy.   MSDF Do you initially discuss a plan of action, a stepwise pattern of medication prescribing, or do you wait until something needs to be changed to bring it up with patients?   Dr. Han That is a very good question. I’m sure it varies among clinicians, but, however, I would like to paint the picture to the patient the best that I can. So, let’s say for example, if a patient who is a newly-diagnosed MS patient who has very few MRI lesions, I would discuss with them what the most appropriate medication could be. We would decide a medication and we would also give them an outline of what the followup plan would be and when we would be deciding to switch to a different therapy, and if so, which medications would be most likely appropriate for them, and also how we would monitor them. So by doing this, it gives the patient a better picture of their path and what to watch out for, and in my experience we have a better outcome with these patients.   MSDF Do you find that once you achieve success in limiting relapses and lesions that the medication is fairly stable for a long time, or do you have to have an armamentarium that you keep moving through?   Dr. Han So my model if a patient is responding to a medication, unless they have other side effects or reasons to switch, I would like to get the most mileage out of the medication as much as I can for a particular patient. However, if a patient, for example, has JC virus positivity, in which case even if they’re responding to Tysabri really well, there is a cutoff time point where we have to sit down and consider whether this patient should be switched onto a different medication to prevent the development of opportunistic brain inflammation such as PML, in which case what the next medication would be. And so we would sit down and talk the pros and cons; this conversation was started even before the patient was started on medication, but that would be the checkpoint.   MSDF I suppose another aspect is do medications start to fail patients even after a long period of stability, or do they usually continue to be stable if the medication is working for some period of time?   Dr. Han This is also a very pertinent question. MS patients, as we know, is very heterogeneous. Some of the patients, if they are stable on a medication, they would continue to do well on a medication for several years up to decades. However, some patients would have an initial improvement or stabilization of their disease, however in the later stages they would have worsening disease. And it is really unclear whether because their disease per se is getting worse or whether their body is rejecting the medication secondary to the immune response. And that is also one area that we should do research on to better understand this condition.   MSDF When you say reject the medication, are you actually referring to an immune rejection such as with, say, interferon; I would think it would be less likely they would actually mount an immune response to a small molecule. Am I clear on that or not?   Dr. Han I think we have quite a lot of information in terms of beta interferon therapies, because we clearly know that patients do tend to develop antibodies against beta interferon, especially the therapy. However, even that we don’t really know if all those antibodies are attacking the drug or whether they are just there. So just by finding the antibody alone is not enough to say that the patient is not responding to it; I think we need to use it hand-in-hand with the clinical response as well as the MRI activity.   Getting to the second part of your question whether there’ll be less intolerance or rejection to the therapy if it were small molecules, but I don’t think we understand at the cellular or molecular level. For small molecules there could be receptor down-regulation, there could be availability or cellular sequestration, or even the prodrug being converted to an active drug, or how the breakdown process occurs. So when a patient does not respond anymore to a medication, we just know that the clinical response is worse, and we don’t really know whether it is because the disease activity has worsened or other aspects, pharmacodynamic or kinetic aspects of the system has changed in such a way that they no longer respond. So, again, we do need to do more research to have a better understanding.   MSDF You have called it MS comes in many different flavors. Have you found that any medications are particularly good for different constellations of symptoms, or is everything about equal no matter how they present?   Dr. Han Very good question as well. I think in the experimental models people know that MS, or central system autoimmunity, can have a bias towards one type of inflammation as opposed to the other. For example, some would say that certain medications are better to treat Th1 as opposed to the Th17 type of inflammation, however in human beings there’s no clear-cut Th1 MS or Th17 MS. I don’t think people have done enough studies to clearly decipher the immune profiles of patients. So the answer is we don’t know.   MSDF Finally, let’s talk about the need for biomarkers especially very early in the disease when someone’s presenting with CIS which may or may not become MS. Where does that stand and how acute is the need?   Dr. Han The need is there, especially if you look at it from a patient who just had an initial attack. If you tell them that we don’t really know whether this is a one-time thing or whether you’re going to develop MS, and we’ll have to wait and see for three-plus years. So for these three years, the patient’s life is very much consumed by the “is it going to be MS” kind of question. And it does affect their physical-mental wellbeing as well as their quality of life.   I think we’ve come a long way with the advancement of the MRI studies in such a way that if a patient has MRI lesions together with the first-time attack, we could almost clearly say that this is going to blossom into MS. However, for patients who are radiographically clean and who just had one episode, it would be very, very helpful to have some kind of blood biomarkers to predict whether this could be a single event or whether it could be a central nervous system inflammatory disorder.   MSDF You picked three years as a period of waiting, watching. Are they out of the woods after that, or how late can it blossom into full MS?   Dr. Han It’s always a bell-shaped curve. There are patients who would declare themselves sooner than three years, there are also patients who would take several years before they have the second attack. I have one patient who had an initial attack of optic neuritis and nine years later she had the second attack. During that period, she had had MRI scans for three years which were clean. So, I guess, one is never completely out of the woods, but at the same time it is also not prudent to perform unnecessary tests on a patient.   So I think we have to focus on what is the safety net and pick a period of time, but at the same time it is very important to educate a patient to symptoms to watch out for, how to get help, and to work very closely with the primary care physician or a neurologist so in case the symptoms show up they will not be ignored or delayed to receiving treatment.   MSDF Is there anything we’ve missed or is important to add? I’m sure it’s a gigantic field, but is there anything glaring that should be added?   Dr. Han I would like to encourage people in the field to also focus on the secondary-progressive stage of MS. We know that relapsing-remitting MS patients with or without therapy eventually would end up having secondary-progressive MS, so it’ll be really important to decipher whether during the secondary-progressive stage there is no inflammation but only the early neurodegeneration, or how the immune system and the central nervous system interact and how we can change it, or at least modulate it, to either delay or to prevent neurodegeneration. The third area that I think is very important is to try to understand the regenerative aspects of the central nervous system.   As I have given you the example, if we have two patients who have had similar lesion burden or even lesions that are approximately the same in similar areas, a patient can be severely devastated, neurologically devastated, whereas the other may have minimal neurologic deficits. And we would always say that it depends on the brain reserve, or neural reserve, but we don’t quite know what it is. Is it the stem cells, is it the nervous system being more resistant to insult and how the immune system interacts with it? And I think this is also a big area that we should focus on, of course, to prevent further damage, but also once the damage is done to limit the damage and perhaps to regenerate it. And I think that people always have within themselves the ability to heal.   MSDF Good, thank you.   Dr. Han Thank you.   [transition music]   Thank you for listening to Episode Forty-Three of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.    [outro music]

[intro music]   Host – Dan Keller Hello, and welcome to Episode Thirty-Nine of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features the second part of our interview with Joseph Berger of the University of Pennsylvania. But to begin, a couple of updates.   Last week we told you about our Drug-Development Pipeline, which includes continually updated information on 44 investigational agents for MS. Since last week’s podcast we added two new trials, we updated information on 10 other trials, and we added 10 other pieces of information. The drugs with important additions and changes are dimethyl fumarate, fingolimod, glatiramer acetate, interferon beta-1a, interferon beta-1b, and phenytoin. To find information on all 44 compounds, visit msdicovery.org and click first on Research Resources and then on Drug-Development Pipeline   Two weeks ago we described how we curate a weekly list of all newly published scientific papers on MS and related disorders. Last Friday’s list included 53 papers. We selected two of them as Editor’s Picks: One is a Cochrane meta-analysis of dimethyl fumarate – trade name Tecfidera – for treating MS. The other is a study from Paul Tesar’s group at Case Western Reserve University. That study, which appeared in Nature, is entitled “Drug-based modulation of endogenous stem cells promotes functional remyelination in vivo.” To find the full weekly list and the Editor’s Picks, click on the Papers tab at msdiscovery.org.   [transition music]   Now to the interview. Dr. Joseph Berger is a professor of neurology at the Hospital of the University of Pennsylvania. In part one of his interview we talked about risk of progressive multifocal leukoencephalopathy. This week, Dr. Berger discusses diagnostic dilemmas in MS.   Interviewer – Dan Keller Dr. Berger, how do these present, and what are some of them?   Interviewee – Joseph Berger They’re legion, actually. There are a lot of different diseases that can look very much like multiple sclerosis both in terms of the history and physical examination as well as in terms of the radiographic findings. And the question is, do you want to avoid treatment that is not very helpful and expensive? You know, once you’ve made a diagnosis of multiple sclerosis you tend to put the patient on a disease-modifying therapy that they would remain on for the rest of their lives. And there’s an expense and some risk depending on what you put them on, associated with that. Secondly, there are diseases that, if you miss the diagnosis, these are diseases that can be aggressive in and of their own right, and if you’ve misdiagnosed it there’s a concern that disease may go on and create its own problems for the patient. So there are a variety of reasons why you want to ensure that what you’re dealing with is truly MS and not one of the MS mimics.   Among the common MS mimics, one that we’ve had increasing experience with in the recent past, is neuromyelitis optica. So, neuromyelitis optica was a disease that we lumped together with multiple sclerosis, but we’ve realized recently that not only is the pathogenesis different than multiple sclerosis, it being a humoral immune disorder, but that the therapies that we employ for multiple sclerosis may actually aggravate neuromyelitis optica. So that’s a common concern and one of the reasons why we frequently obtain neuromyelitis optica antibodies in patients, particularly when they present with optic neuritis or transverse myelitis, and certainly when they present with both of them.   MSDF That would be aquaporin-4 antibodies?   Dr. Berger That’s correct. It’s an aquaporin-4 antibody, but not everybody with neuromyelitis optica has the aquaporin-4 antibody that’s demonstrable. A certain percentage of them have what appears to be an anti-MAG antibody, and others we simply don’t know what the antigen is. And that’s being worked out. So there’s this whole spectrum of neuromyelitis optica that you certainly want to sort out from multiple sclerosis. But there are also a wide variety of other illnesses that can look like multiple sclerosis. In fact, if you take any broad classification of diseases – infection, vascular, neoplastic, toxic, metabolic, genetic, etc. – if you do that and say, are there diseases in these categories that can appear like multiple sclerosis and be mistaken for multiple sclerosis, there are. So every single one of these broad categories can have within it a disease that can be mistaken for multiple sclerosis.   MSDF Would they be mistaken for multiple sclerosis on many measures or mainly signs and symptoms or is it radiologic on imaging? How do you sort out this kind of gamish of different diseases and how they present, and really nailing down an MS diagnosis, not even considering a diagnosis of what else it could be?   Dr. Berger So it can be enormously difficult to do so. And I’ll give you some examples from my own practice. I have, for instance, seen individuals with a disorder called hereditary spastic paraparesis where you were unaware of their hereditary nature of their disease. And the patient has come in with a progressive myelopathy. And you say, well, could this be primary progressive multiple sclerosis? And could be extraordinarily difficult to sort out, particularly if they don’t have common mutations, and they don’t have a family history. And you say, well, which is it? The spinal fluid can be very helpful in that regard.   The MRIs can be very helpful in that regard, but not always. I’ve seen individuals who’ve had vascular disease where the MRI abnormalities have looked very much like multiple sclerosis. They’ve had recurrent episodes of neurologic symptoms be it numbness or weakness or visual problems, and it be mistake for MS. I’ve seen individuals with intravascular lymphoma, a rare disease, but one where they’ve presented with both clinical picture and MRI that looks very much like multiple sclerosis.   Although we have good diagnostic criteria, there is no single test that tells you that this is MS. But there are times when all of us, even the very best clinicians, scratch our heads when a patient’s reappeared in the office; nothing new has happened to him. Ten years have elapsed, and you say to yourself, did they really have multiple sclerosis? So, again, it’s a matter of comprehensive history and physical; the appropriate radiographic studies; looking at the spinal fluid when that’s indicated; and doing the appropriate laboratory studies to rule out things that may mimic multiple sclerosis.   MSDF Is that why there is a diagnosis of CIS? If it never returns, then it was CIS?   Dr. Berger I guess one could say that, but I use the term CIS to mean the very first episode of multiple sclerosis. So when I label somebody with CIS, I already believe that they have multiple sclerosis. I think that if they have CIS in the absence of any radiographic findings, I’d be unlikely to label them CIS. CIS to me is in the continuum of MS, so you have CIS, relapsing/remitting multiple sclerosis, secondary progressive multiple sclerosis. So that’s how I use the term.   MSDF Can you definitely rule in or rule out multiple sclerosis?   Dr. Berger I think that there are probably rare instances where people fulfill all the criteria for multiple sclerosis. And at the time of autopsy you say, how about that? That wasn’t multiple sclerosis. There’s an old expression in medicine that you can never be a 100% certain. You can never have a 100% certainty. So I think that you do the best you can. And I think that probably the rate’s 99% or better, but in these people fulfilling the criteria that have been established. However, you can never be entirely certain.   And it is not that uncommon in my practice, and I’ve been practicing medicine nearly 40 years, where an individual has presented the office after a long hiatus. And the chart is unavailable to me, and they come in with a diagnosis of multiple sclerosis, and I say, who made the diagnosis of multiple sclerosis in you? And they go, you did, Dr. Berger. So I think go down to the cave where they keep the charts that are over seven years old only to find out that they had all the criteria for multiple sclerosis; that they had oligoclonal bands, and they had hyperintense signal abnormalities on their MRI, and they had relapsing symptoms, but, you know, over the course of the last 10 years they’ve had little. And you scratch your head and say, geeze I wonder if this is truly MS?   There are probably people who carry this diagnosis, and there’s literature on it, that carry it incorrectly.   MSDF Those criteria, even though it never turned out to be MS, satisfied a diagnosis of MS. When you see something like radiologically isolated syndrome, do you work it up for MS, or only once it presents later does it become MS?   Dr. Berger This is a very difficult question, and we see this with some regularity, that is, the individual that has hit his head in a car accident or developed a headache that somebody’s decided to do an MRI on. And they come in with an MRI that looks all the world like a patient with multiple sclerosis, yet they have no symptoms and no signs on physical examination that is suggestive of multiple sclerosis. And the question then becomes, what do you do with them?   There’s currently a study in which that question is being addressed. However, I will tell you what I do, currently. I do look for multiple sclerosis. I look for lesions in their spinal cords because I think that if they have that, the prognosis can’t be good, and I would likely start somebody with lesions in their spinal cord, who I’m convinced has MS, on a disease-modifying drug.   I look their spinal fluid. And I look at their spinal fluid for oligoclonal bands, and, if I see that, I’m increasingly convinced that that’s what we’re dealing with. And I would be inclined to treat those people as well. Now whether I’m doing the right thing or not, I don’t know, but for others in whom there are no spinal cord lesions, there are no signs or symptoms, and the spinal fluid is pristine, I’ve elected to wait. That is not necessarily the consensus among the MS community. That’s simply how I practice, currently.   MSDF People don’t need oligoclonal bands to have MS, though, do they?   Dr. Berger No, not at all. So, we certainly see a fair number of people – and it depends on the study – who have pristine spinal fluids. That means no oligoclonal bands, no cells, no increased protein, no elevated myelin basic protein or IgGs who still have multiple sclerosis.   MSDF What about fatigue as an initial symptom of multiple sclerosis? A lot of people have fatigue – tiredness. Is there a way to differentiate the fatigue of multiple sclerosis from just being tired or a sleep apnea or an insomnia or they just don’t feel good?   Dr. Berger Well, I think your history is very helpful because the sleep deprivation and excessive daytime sleepiness is not the same as the fatigue that people with MS report. The fatigue that people with MS report is akin to the fatigue that one experiences when they have a viral illness. So when you have the flu you go, oh man, I just can’t get out of bed. I feel terrible. And that’s precisely what the people with multiple sclerosis have. And what’s so interesting is how common it is. So it’s been said to be the greatest cause of disability in the MS population. It’s an acceptable cause of disability; not blindness, not incoordination, not weakness, but fatigue.   And it’s curious, when I practiced in Kentucky, I had a number of patients who were wheelchair-bound, had very poor vision or had double vision because of paralysis ocular palsies, who went to work every single day. And then I had patients that looked as healthy as you and I, and they were on disability. And I said, well, why is it that you can’t work? They said, I’m just too fatigued. I can’t do anything. It’s affected everything.   So the fatigue is different, and getting back to the frequency of it, so in individuals who have been diagnosed with multiple sclerosis, and I was part of this study, if you look at large numbers of individuals diagnosed with MS or who are on disease-modifying drugs for MS and go back and look at their medical records prior to the time of the diagnosis, you will see that about a third of them had been labeled by their family physician or their internist as having one of two diagnoses: chronic fatigue syndrome or fatigue and malaise. They’re the only two diagnoses with fatigue in them that you could put into the ICD-9 classification.   So, this is striking that so many individuals have fatigue recognized, yet it’s an advance of their having any neurologic symptoms that were believed to be the consequence of multiple sclerosis. It’s not to say that they didn’t have them. You know, it might have been some transient numbness or transient tingling or slight weakness that went away that nobody ever thought was due to multiple sclerosis. So that we don’t know about. But what I can tell you is that prior to an established diagnosis of multiple sclerosis, roughly a third of individuals have been labeled by their family physicians with fatigue.   MSDF It’s interesting that you make the analogy between this sort of fatigue and that with a viral illness like the flu. Could this be a prodrome telling there’s an inflammatory process going on? I mean, is there interferon release or are there other mediators that seem to be unique to this kind of fatigue?   Dr. Berger I would like to think that that’s the case. I would like to think that this is due to the very same cytokines that cause the fatigue that’s associated with viral illness. That’s not been convincingly demonstrated, although it’s been proposed. I think it makes a lot of sense. Coming full circle, eventually, although most of my colleagues classify multiple sclerosis as an autoimmune disease, there must be a trigger for the autoimmune disease. And my own belief, coming to this from virological angles as opposed to coming at it from an immune angle, is that there’s probably some infectious origin.   One of the things that’s so striking is the association between Epstein-Barr virus and multiple sclerosis where virtually every adult patient with multiple sclerosis has evidence serologically of having been exposed to Epstein-Barr virus. Now I’m not saying that that’s necessarily the cause, but in some way it must contribute to the development of the disease perhaps in a way that low vitamin D levels contribute to the genesis of the disease.   MSDF Is there anything you’d like to add about diagnostic dilemmas or any kind of a mental framework for approaching this sort of thing, in nutshell?   Dr. Berger Yes. The one thing that I would say is never be too confident. Never be too confident. I found that my highest confidence levels were right before I took boards in neurology, which was a long time ago. And I thought I knew everything. And the more I practice neurology, the more humble I’ve become in terms of establishing diagnoses and selecting right therapies for patients. So I always have a healthy skepticism. I have a healthy skepticism of things that I feel certain about. And when patients represent to office I always question myself, particularly if there’s something that doesn’t fit with the diagnosis. And I think that that’s good advice to anybody practicing medicine.   MSDF Very good! Thank you.   Dr. Berger My pleasure.   [transition music]   Thank you for listening to Episode Thirty-Nine of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.   [outro music]

[intro music]   Host – Dan Keller Hello, and welcome to Episode Thirty-Three of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with Dr. Pierre-Antoine Gourraud about the function of human leukocyte antigens and their role in MS. But to begin, here's a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org.   Early in January, the journal Nature Reviews Neurology published a highlights issue of research advances in MS in 2014. The milestones included successful phase 2 trials for simvastatin in progressive MS, new clinical phenotype categories, and more. We summarized each of these advances, supplemented with interviews from some of the authors. Go to the “News and Future Directions” section of our website and click on “Top 8 MS Research Advances of 2014” to read it. And please do make use of our comment section, especially if you believe that we – and Nature Reviews Neurology – failed to list any equally important advances.   Dimethyl fumarate, also known as Tecfidera, may lower CD8-positive T cells in patients with MS, according to a new study out last week. This news follows an earlier story of a patient who died of complications from the rare brain infection, progressive multifocal leukoencephalopathy, or PML, after taking dimethyl fumarate. The drug is known to lower leukocyte levels, including lymphocytes, but many patients are able to maintain normal white cell counts while on the drug. This study showed that even patients with normal leukocyte counts may have dangerously low levels of CD8-positive T cells. These cells are involved in viral immunity, and lower levels of them may leave the gate open for opportunistic infections, such as JC virus, that causes PML.   If you enjoy this podcast and find MSDF helpful, please consider supporting us with a donation. MSDF is run by a small team of three full-time employees and a few regular contributors. We are devoted to bridging the gaps between scientific disciplines to speed the flow of information from the lab bench to the bedside. Our ultimate goal is to facilitate the discovery of a cure. We believe one of the best ways to do that is to bring independent, research-focused news to a professional audience on a platform that fosters discussion and discourse. Help keep us going by visiting our website and clicking on the green “Support MSDF” button next to the “Research Resources” tab on the top right of our screen.   [transition music]   Now to the interview. Dr. Pierre-Antoine Gourraud is the leader of the translational digital medicine group in the Department of Neurology at the University of California, San Francisco. He’s also a distinguished member of our scientific advisory board. He met with science writer, Cynthia McKelvey, to talk about human leukocyte antigen in MS.     Interviewer – Cynthia McKelvey Let’s begin by defining the major histocompatibility complex and human leukocyte antigen; what those are and how they relate to multiple sclerosis.   Interviewee – Pierre-Antoine Gourraud So the MHC, the major histocompatibility complex is one of the most important region of the genome. It’s 1000 of the genomes, 3.6 megabase, but it represent about 1% of the total number of genes. So a region that is very dense in genes that are very, very important in neurological functions. It’s also one of the most polymorphic region of the genome, which mean that there are many, many version, many diversity, a lot of alleles, as we call these different forms of a given gene for that particular region of the genome. Basically, it’s encode for or identity or genetic identity, and it has been studied a lot for transmutation. So for multiple sclerosis, since 1972 has been recognized that something in that region had to do with multiple sclerosis risks or the susceptibility; why people are getting multiple sclerosis whatever or not. So back in 1972, researchers realized that people carrying an HLA-DR2 type were actually more susceptible to multiple sclerosis. So doing that in a very simple and comparative manner, we took a bunch of people that have MS, a bunch of people that don’t have MS, and you just see that people that have MS tends to have more HLA-DR2. At that time, the HLAs so the genes that bears the immunity identity of [?] – very important for transmutation again – they were typed by serological techniques. So we were using antibodies to distinguish different types. Over the years, serology has been replaced by PCR-based technique, molecular techniques, and we are now doing HLA typing by sequencing. And for 30 years basically this result has been confirmed, and many additional findings we find the initial association between the MHC region and multiple sclerosis.   MSDF So you’re looking at a cohort of African American MS patients and comparing them to people of European descent with MS. And, you're seeing some differences in the major histocompatibility complexes with these. And how do those relate to MS? What are they telling you about the disease?   Dr. Gourraud You know, if we're stepping back a little bit, it's very important to get very large samples to do genetic studies. The more people we are looking at the easier the findings easy to find alleles. So UCSF and other groups in the world have been organizing to coordinate their effort in structuring the International Multiple Sclerosis Genetic Consortium, IMSGC, and we have been really, really successful in gathering large number of MS patients of European ancestry, as well as controls. Within that consortium, UCSF and Dr. Cree and Dr. Oksenberg, have been pushing an effort to coordinate as well African American cohort of MS patients. So we have been working on that, and for the past two to three years we have done a tremendous effort to actually type the HLA of these patients and these controls. And we have gathered more than about 1600 African American MS patients – and we are still collecting them – and roughly 2000 African American controls to do the comparison.   So the first thing we want to do is to see if we are confirming what we see in the European patients – and that is true – we have found  HLA-DRB1 15:01, 15:03 as a specific allele for African American. The HLA-DRB1 03:01 is also to some extent a risk allele in African American. And we also confirm that in the class I HLA-02:01 has a protective effect on MS. So, it's not necessarily obvious, because some of these alleles are actually not found in people of African ancestry, and they also have a much larger diversity. So we are starting to accumulate evidence showing that other alleles that are not present in the Europeans are associated with MS risk. And that’s a very important finding, because now we are in a position where we're going to find structural, functional commonalities between the African American alleles and the European alleles that are both associated to MS.   MSDF And where do you see the research going from here?   Dr. Gourraud So one also very important topic that's being working on both in Europeans and African American is trying not to consider HLA on its own, even if we have really put a lot of samples and money and effort in that, but also consider another very complex family of genes that interact with HLA. These are called KIR (K-I-R), and they are receptor at the cell surface of NK cells, the natural killer cells that have a very important role in immune regulation, and it has been reported that NK cells are actually present in the brain in active MS lesions. So we looked at these two system as potentially interacting to define the risk of MS. So we started typing also for these KIR genes in our African American to be able to study at the same time the MHC or the HLA genes, the KIR genes on a different region of the genome, and also the rest of the genome where we've used a simple marker called SNP.   MSDF That’s great. Thank you very much.   Dr. Gourraud You’re very welcome. Thank you.   [transition music]   Thank you for listening to Episode Thirty-Three of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.    [outro music]

[intro music]   Host – Dan Keller Hello, and welcome to Episode Thirty-Two of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with Dr. David Holtzman of Washington University in St. Louis about how a protein implicated in Alzheimer’s disease may also have a role in MS progression. But to begin, here's a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org.   We recently added a new data visualization to our growing collection. This one organizes every ongoing MS clinical trial—142 of them—into an interactive bubble chart. The size of each bubble represents the sample size of the trial, and the color indicates if the compound has been used to treat MS before. You can organize the chart 10 different ways, including by phase, compound, and sponsor. Go to the “Research Resources” section of our page and click on “data visualizations” to view it.   Yet another Phase 2 trial on autologous hematopoietic stem cell transplant was published last week. We reported on this trial’s results and how it was different from previous trials we covered. Like the last two studies we reported on, this current study yielded very encouraging results. To view all of the stem cell stories, go to the “news and future directions” section of our website and look for any story with an image of a mouse in a little white lab coat.   New research from the journal Neurology suggests that imaging measurements of the spinal cord and retina independently correlate to disability. Specifically, damage in the two structures was related to visual acuity and to the patient’s ability to discern vibration sensation. The authors suggested that clinicians may want to incorporate scans of the spinal cord and retina into their routine practice.   [transition music]   Now to the interview. Dr. David Holtzman is Chairman of the Department of Neurology at Washington University. He met with MSDF senior science journalist, Carol Cruzan Morton, at a recent Keystone meeting in Taos, New Mexico, to discuss how his work on apolipoprotein Ein Alzheimer's disease may be relevant to MS.   Interviewee – David Holtzman Most of my career has been focused on trying to understand the pathogenesis of Alzheimer's disease, as well as to develop better diagnostic and treatment methods. However, in doing that – in trying to study the science behind that disease – I've also worked a lot on how normal brain function might be related to not only Alzheimer's disease but just some of the proteins that are involved in both Alzheimer's disease and related disorders.   Interviewer – Carol Cruzan Morton We're at the Keystone meeting on neuroinflammation in Taos, New Mexico, and at the talk this morning you mentioned that there might be a connection between the ApoE and this protein involved in Alzheimer's and MS. Can you talk a little bit more about how that protein works normally in an Alzheimer's, and how you came to make that connection to multiple sclerosis?   Dr. Holtzman Sure. Apolipoprotein E first just in terms of a risk factor for Alzheimer's disease ApoE is present as a protein in all of our bodies. It's made in the brain; it's made by the liver; it's at very high levels in the bloodstream. ApoE plays a role in the bloodstream in transporting lipids around the body. It turns out, though, that if the only thing it did was to transport lipids in the blood then you would probably only need to produce it in the liver so that it was secreted into the blood. But interestingly, it's also produced in several other organs: the ovary, the testes, the brain, and a few other places. So in those other organs, it doesn't probably have exactly the same function that it does when it's made by the liver. But the form of the lipoprotein that's in the brain that ApoE is within is somewhat different than it is, for example, in the bloodstream. It's in what's called HDL or high-density lipoproteins in the brain.   MSDF That's a good thing, right?   Dr. Holtzman That's the good cholesterol. That's the good cholesterol in the blood. In the brain, it's not entirely clear what these HDL lipoprotein particles are really doing. So, for example, if ApoE is absent from the brain of a person, and there are people that have genetic mutations, they have no ApoE in their body…   MSDF Completely gone.   Dr. Holtzman Completely gone. And they have developed serious problems with cholesterol buildup in their arteries because they can't clear big lipoprotein particles from their blood, but their brain is okay, no problem. The people are born normal; brain is okay. And there are probably other proteins in the brain that may be able to takeover for its function in the brain; whereas in the blood that's not the case.   MSDF And when it goes wrong in Alzheimer's, what's happening…?   Dr. Holtzman So that's a different issue. So in Alzheimer's disease, there's no lack of ApoE. In humans, there's three different flavors of ApoE: ApoE2, ApoE3, or ApoE4. And there's a very, very subtle difference between the ApoE2, 3, and 4; just really, really small difference. So brain function in people that are of different ApoE types is normal when they're born and when they grow up and as adults. But for some reason – which we'll talk about in a moment – when people have the ApoE4 form of ApoE, it causes a higher risk for Alzheimer's disease probably because it's promoting the buildup of one of the proteins that's really important in causing Alzheimer's disease earlier. So this amyloid protein that builds up in Alzheimer's is strongly influenced by the form of ApoE that you produce. So if you make the E4 form, it's probably because amyloid doesn't get cleared away as well; it builds up earlier. And if you have the ApoE2 form, which is protective against Alzheimer's disease, it pushes out the development of amyloid deposition until very old ages, if ever. That may be something that's related to Alzheimer's disease that's distinct from what it might do in other diseases of the brain like MS, for example.   MSDF How did you make that connection to MS?   Dr. Holtzman Right. So over the years, there's been a number of scientists and physicians around the world who have studied the many possible functions of ApoE in the body. And for gosh it's been about 30 years or so, there's been reports that one of the things that ApoE does is to influence inflammatory cells: T cells, macrophages, etc.   MSDF All over the body or in the brain and spine?   Dr. Holtzman Yeah, in different locations actually. It's never been completely clear exactly what ApoE is doing to the immune system. A lot of studies individually show effects, but it's not entirely clear what it's doing. And so, I got interested in this personally a few years ago there was a prominent paper published suggesting that one of the things that ApoE does to the immune system outside the brain is to help present antigens to the immune system if they contain lipids. And so, that caught my attention because, one, ApoE carries lipids. And just naively I thought well if it helps present lipid antigens in multiple sclerosis the antigens that are being attacked generally are the lipid related antigens.   MSDF The myelin.   Dr. Holtzman The myelin, right, exactly. So I thought well that seems, you know, maybe there's something to this that one could study in relation to MS because of that.   MSDF And then how did you go about asking those question? Where did you start?   Dr. Holtzman Basically, I thought alright, well a lot of people who work on MS if they use animal studies use the model EAE. So we thought well some of my colleagues at Washington University have been using the EAE model for years – like many people have – and so we thought well the obvious experiment to try first is just compare animals that express ApoE in their body versus those that don't. And simply ask the question is there anything different about EAE in an animal that lacks ApoE or not? And so, first, we started working with Anne Cross and then later with Greg Wu together who are experts in using animal models of MS. And ultimately published findings showing – and a few other groups have worked on this, as well – showing that there appears to be decreased clinical severity of EAE in a slightly later onset of disease in animals that lack ApoE.   MSDF And what does that tell you…there might be a role or…?   Dr. Holtzman Obviously many other studies would need to be done to know if it has a role in human MS. But once we found that, particularly Greg's lab began to ask the question well if that's true what's the mechanism? If there is a mechanism that we could hone in on, is that something that seems logical based on what we actually know about ApoE already? And so, the things that kind of came out of our first series of studies was that – unlike what I initially had thought from this earlier paper – it doesn't appear that ApoE is modifying antigen presentation of cells or the ability of T cells to react against the brain. But something once T cells do get in the brain to attack myelin and other components, there's something about that ApoE is acting on at that point. It could be that it's involved in allowing the myelin to repair, or alternatively it could be that when T cells get into the brain and interact with other cells in the brain – like other immune cells like microglial cells or dendritic cells – that that interaction is altered by ApoE within the brain. That might make sense given that ApoE is highly expressed by macrophages outside the brain, and inside the brain it's highly expressed by what are called activated microglial cells. So kind of the macrophages of the brain. So that's where we kind of are now, and I think there's a lot more studies that could be done to really understand both that interaction as well as whether human ApoE causes the same effect that we saw in animals as mouse ApoE. Because they're not exactly the same; they're similar but not the same.   MSDF Is there other evidence connecting ApoE or its various forms with MS?   Dr. Holtzman There are human studies that have been done trying to ask the very simple questions of is the ApoE4, which is a risk factor for Alzheimer's, is that over represented in MS? Or is the ApoE2 form, which is under represented in Alzheimer's, is that protective against MS? And the studies on this some have suggested effects, some haven't. There's no clear answer. But I think if ApoE is involved in MS, it would be less likely to be involved in whether you get MS but more likely involved in the progression of the disease. And I know in the MS field one of the big areas now – now that there's so many studies and as well as treatments that have emerged that are quite effective at suppressing the initial phases of MS, the immune response phases – a lot the work is going into understanding this prolonged progressive phase of MS. And that's where ApoE could be important in sort of the repair and recovery of neurons and axons, for example. Because the fact it transports lipids between cells, maybe it has something to do with recovery of the brain after injury. And that's been speculated on for some time, although not as much work on that has been done in MS.   MSDF Has it been speculated on in MS or MS and Alzheimer's both or…?   Dr. Holtzman No, it's been speculated on after a variety of different brain injuries that it plays a role in redistributing lipids in the brain after injury, and that might be promoting recovery. So one possibility that still hasn't really been tested that I'm aware of in models of MS or in human MS is to whether that really happens for ApoE in the human brain or animal models.   MSDF Can that be tested now?   Dr. Holtzman Absolutely, absolutely. Those are some of the studies that I think are really critical as the next step.   MSDF Is it conceivable that the body of knowledge for Alzheimer's research on ApoE might yield a treatment for progressive MS?   Dr. Holtzman It's possible. I mean a lot of the understanding of what ApoE might be doing in the brain has really expanded because people have been studying Alzheimer's disease and its relationship with ApoE. So I can't imagine it wouldn't help with that because we've learned a lot so far.   MSDF Are there other treatments in the pipeline for Alzheimer's related to ApoE?   Dr. Holtzman There are. There's not too many things yet that have reached human trials, but there are groups trying to alter the level of ApoE in the brain or to alter its receptors in the brain as potential treatments for affecting Alzheimer's disease. So yeah, I mean those are the kind of things, as they advance, depending on what's found in regard to the relationship between ApoE and MS could be tried in MS. I don't see why not.   MSDF That's interesting. What else should I be asking?   Dr. Holtzman I think what scientifically what I think is really important to still sort out in this area is that when the innate immune cells of the brain – the microglial cells or even macrophages when they get into the brain – they produce tremendous levels of ApoE when that happens. And I think understanding what that protein is really doing in that setting could provide insight into future treatments. So that's what I think is really fascinating to try to understand.   MSDF Well if it happens in Alzheimer's, as well, it happens before the blood-brain barrier breaks down and then after it, it sounds like.   Dr. Holtzman Well, in MS, it's probably occurring after there's cell entry into the brain. But the upregulation of ApoE by these innate immune cells is much higher in MS than it is in Alzheimer's disease.   MSDF Oh, is that right?   Dr. Holtzman Yeah, yeah.   MSDF That's interesting. That's even more interesting.   Dr. Holtzman Yeah, I know. That's why it's really, really fascinating. I think one of the figures from the paper that we published last year from Greg's lab showed that the level of ApoE increasing in microglial cells versus similar cells that are present in the spleen of an animal is like 25 times higher in the setting of an EAE model than normal. So it's really, really high. Is it really doing anything, or is it just a byproduct? I suspect it probably is doing something. So that's what I think would be really interesting to figure out.   MSDF Thanks. Well I appreciate your taking time out at the Keystone meeting to talk with MS Discovery Forum.   Dr. Holtzman Yeah, it's great. Well good luck. MS is such a…the treatments that have been evolving are so exciting compared to Alzheimer's disease where we don't yet have good treatments. So I think there will be soon, but I think it's a great opportunity to even advance for ...   MSDF Is there a chance that the reverse could be true? That treatments existing for MS would be helpful in Alzheimer's?   Dr. Holtzman That's a good question. I don't know if any of the frequently used ones where you're preventing cell entry into the brain necessarily would be useful for Alzheimer's. But like one of the new drugs, Tecfidera, this oral medication does do some interesting things to cells in the brain that might be useful in a disease like Alzheimer's. So maybe there will be some things that we can translate.   MSDF I appreciate it. Thank you so much.   Dr. Holtzman Thank you.   [transition music]   Thank you for listening to Episode Thirty-Two of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.   [outro music]          

[intro music]   Host – Dan Keller Hello, and welcome to Episode Nineteen of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features the second half of an interview with Dr. Samuel Ludwin. This time Dr. Ludwin and I discuss the implications of treating multiple sclerosis subtypes. But to begin, here is a brief summary of some of the latest developments on the MS Discovery Forum at msdiscovery.org.   This week we reported some good news: a large case-controlled study showed that there is no causal link between vaccines and multiple sclerosis. However, the study came with the caveat that there is some increased risk for developing MS in younger patients who receive vaccines. This increased risk is likely due to the vaccines triggering a pre-existing asymptomatic condition, the researchers said. The study, which was published in the journal JAMA Neurology, was most concerned with the role that vaccines for hepatitis B and human papillomavirus play in the long-term risk for developing MS.   We also reported on a new iPad app that will allow clinicians and MS patients to track their disease course. The app, called Bioscreen, is currently in beta-testing at the University of California, San Francisco. The developers, including Pierre-Antoine Gourraud who is on MSDF’s scientific advisory board, assert that Bioscreen has the potential to be a powerful tool for researchers, clinicians, and patients. At the core of the app is a dataset of around 600 patients who have been participating in a data collection survey for the past 10 years. Physicians can compare their patient’s disease course with other confirmed MS cases and use that information to influence their recommendations. The researchers also believe that patients’ ability to visualize their own disease in this way will improve adherence to medical recommendations and ultimately strengthen the bond between patient and physician.   Every week we publish at least one “Research Roundup” where we curate stories from around the web related to multiple sclerosis. Recently we published roundups about advances in spinal cord injury treatment, the recipe for selling the perfect bogus drug, and the report of a rare brain infection in a patient taking dimethyl fumarate, trade name Tecfidera. To view Research Roundups, go to the “News Briefs” section of the “News and Future Directions” tab at msdiscovery.org. Look for the blue Research Roundup logo and stay up-to-date with all the latest MS news.   [transition music]   Now to the interview with Dr. Samuel Ludwin, a neuropathologist who is currently a visiting scientist at the Montreal Neurological Institute. Last week we aired an interview with Dr. Ludwin in which he discussed remyelination therapies. This week he speaks with MSDF about MS subtypes.   Interviewer – Dan Keller Welcome, Dr. Ludwin. Let’s talk about some of the subgroups of multiple sclerosis, as has been proposed by Professor Hans Lassmann, and you wrote an editorial some time ago about it. First of all, can you tell me what subgroups he identified and what progress there has been made since then?   Interviewee – Samuel Ludwin This is a very groundbreaking paper, very controversial, and over the years many people who have followed this particular pattern, others who’ve not been able to reproduce it and believe that the conclusions are not valid. However, what Claudia Lucchinetti and Hans Lassmann showed in a mammoth first-time examination of very acute lesions; they had access to a particularly unique group of specimens that are from both the Mayo Clinic and other areas, where very early lesions were examined. And in looking at this, they looked at patterns of tissue breakdown and the mechanisms of tissue breakdown, and essentially came up with four different categories. The two most important ones are very important to discuss because in the one, the features were very, very consistent with the kind of immune injury that one finds in experimental allergic encephalomyelitis where we know the damage has been caused by the injection of the antigen with a subsequent immune reaction to that antigen. And the other main group was one where there appeared to be a primary damage of some sort to the oligodendrocyte and then a subsequent immune reaction.   Now this is important for a couple of reasons, and the first is that there is a big debate going on in the multiple sclerosis literature or research as to whether the disease starts from the outside peripheral activation of immune cells and then homes in on the brain because they are cross-antigens or cross-antibodies or cross-cells, or whether the process actually starts with damage to something in the brain which subsequently sets off the – and this is called the “inside-out” or “outside-in” controversy at the same time. What this might mean, according to the way they have done the study – which was a very good one – was they suggested that there might be multiple mechanisms towards the end result of damage to oligodendrocytes and myelin, and subsequently the physical appearance of multiple sclerosis lesions.   Other people have challenged this and suggested that maybe it is a question of timing, and the mechanism is the same in all patients, but we’re looking at a different kind of progression and timing. And that controversy is still being discussed, as is the inside-out, outside-in phenomenon. But when you look at some of the things that might be causing these inside-out or their type 3 pattern where the primary damage could be in the oligodendrocyte, there are many reasons that the mechanism could be due to either stroke-like causes such as a lack of oxygen or blood flow that damages the oligodendrocyte, possibly certain infections that may target the oligodendrocyte. And we know that there are many mouse models where you can target oligodendrocytes with certain viruses. And those overlap very significantly with mechanisms of tissue damage in other diseases.   So it is a very important paper because it has set people thinking about multiple mechanisms. The fallout from this is that, in fact, when you have different mechanisms of causing disease, there are potentially different ways of treating it. And if you have a primary immune-based phenomenon from the outside, antiinflammatories as are given on disease-modifying therapies are perhaps the way to go, whereas if you’ve got something that is damaging it from the inside and some other cause, we need to elucidate what that cause is and go straight for that particular cause. In addition, what we are trying to find out is whether we can predict what sort of pattern has caused the disease, either with imaging or with biomarkers, and be able to do this without biopsies and other things so that patients can be treated accordingly. It’s an advance on perhaps what we might call personalized medicine in multiple sclerosis.    MSDF Are there imaging or clinical correlates of these different types of processes? You’re not going to do a biopsy on most people.   Dr. Ludwin No, there isn’t. But in fact, there are some therapeutic differences. For instance, in the type 2 pattern, which is the autoimmune pattern or the outside-in pattern, these patients respond very well to plasmapheresis where one is removing the offending gammaglobulin. And patients with the type 3, which is the main oligodendrocyte-based pattern of the disease, they don’t respond to that well. And that’s perhaps the best clinical differentiation that we know at the moment that helps us. A lot of the data is not clear. They based a lot of the data on the fact that they felt that every patient had a uniform pattern in the lesions. Other people have questioned this and found that there might be a multitude of different kind of patterns in the same patient, and therefore it supported modifications of the same inherent cause.   MSDF Does the efficacy of plasmapheresis correlate with the presence of oligoclonal bands in the CSF, or that’s not a correlation?   Dr. Ludwin There doesn’t seem to be a correlation, leastwise I know. Certainly plasmapheresis where we know that there is antibody, such as in neuromyelitis optica is more effective as a treatment early for diseases where we know that there is circulating antibody, but patients will have oligoclonal banding, I think, in both patterns.   MSDF You’d alluded to damage to the oligodendrocyte in one of these forms as the primary dysfunction or lesion. Does that imply that something is being exposed, an antigen that might be reacted to, or how is that leading to damage?   Dr. Ludwin Absolutely, that if you get damage to a tissue, various proteins are being broken down and antigenic epitopes are being exposed, which then are transported back to the peripheral lymphoid tissue for reactions to take place. I mean, there are counter-arguments to this. One can ask why, with a lot of trauma injury, a lot of stroke injury which is far more common than MS, why you don’t get a secondary immune response to that, even though we know many people with the genetic makeup makes them susceptible to MS or exist in the normal population, and almost certainly some of them have strokes. So there are questions on both sides and arguments. And we know from other experiments that you can induce circulating antigens with tissue destruction of any cause, and potentially these are circulating to be able to produce reactive antibodies in the periphery.   MSDF I think Lassmann showed that even in healthy people you can find CNS antigens in the cervical draining lymph nodes, which raises the same question you just brought up; why do some people have a reaction and some not?   Dr. Ludwin Absolutely, and there are now all sorts of theories coming out of the genetics that there are multiple genes, each having a small effect, but in totality may be adding up to a genetic defect that will allow some of these circulating cells to suddenly start having an effect.   MSDF Now it seems, in terms of thinking of personalized medicine, so much of it is empiric – what works works, and you try something else if it doesn’t. Is there a possibility of any harm from these treatments to people for whom it doesn’t work? Do you have to be very concerned about also first not do harm, especially considering you can’t tell the difference among these types from the start?   Dr. Ludwin Yeah, I think that it’s too early to apply personalized medicine to patients in this particular area in the different types. If you’re looking at personalized medicine that, you know, we treat patients as individuals, or we should, because a lot of the therapy is based on empiric choice and anecdotal experience sometimes with the clinician, and there’s no absolute algorithm that everybody uses to treat a patient. So in that sense, we already do practice it. But you’re quite right, a lot of that is anecdotal or empirical rather than mechanistic.   The do no harm is a very interesting point also, because you mustn’t forget that basically multiple sclerosis is an inflammatory disease, and very frequently we tend to look at inflammation as being something that’s bad. But the reason the body mounts an inflammatory infiltrate is usually to cure something or to clean up something that is attacking it from the outside. So in any kind of these interferences, we have to choose a very find balance between stopping an inflammatory infiltrate or reaction that may be doing a lot of good for the patient, while preventing it from its worst excesses.   And here, empiricism comes in quite well at the moment; we know which of these drugs that we give are more likely to give side effects, we know more about side effects than we do about potential for not allowing growth. We will stop a particular cytokine or block a particular protein in its action, but I think we should always be aware that the protein, if it’s a normal one and not abnormal protein, may be there for a reason and the patients will do worse if they don’t have this mess cleaned up, so to speak.   MSDF We’re also finding today that we’re almost living in a proinflammatory environment; it has repercussions in heart disease, dental disease, MS, fat is proinflammatory. So do all these things add to the risk in MS if there’s other inflammatory processes going on?   Dr. Ludwin Well, it’s not only the inflammatory processes that’s going on, it’s the things that are causing them. As you’re right, we are now discovering that things like salt, fast foods, the changes in the microbiota all tend to make us more proinflammatory. And certainly in experimental animals and now some human studies, it has been shown that experimental immune disease is worsened by a high salt intake which leads to increased salt in the tissues, as well as being prevented by some of these diseases. If you change the gut microbiota in many of these diseases from normal commensals into something that may be pathogenic, you will set off inflammatory autoimmune disease. It’s been shown very beautifully in ulcerative colitis and Crohn’s disease, and the same thing is now being looked at very strongly in multiple sclerosis, so certainly a proinflammatory environment.   On the other hand, it should be remembered that there’s certain kind of infections that produce a reaction that may very well be protective, and there’s some evidence that some of the parasites produce a factor and we believe it could be related to a particular type of protective T-cell that will then allow for patients to become resistant to multiple sclerosis. And there’s some very good data from South America that populations who’ve been exposed to parasites and have them are actually more resistant to multiple sclerosis, because the parasite has induced a protective antiinflammatory molecule in the cell as well. So it’s a very complex balance and we’re gradually discovering more and more about where this balance lies.   MSDF Might the prevalence of parasites account, at least in part, for the geographic distribution of MS?   Dr. Ludwin Well, parasites are just one part of it. There is a very strong feeling, and it comes back to also the gut microbiota – but it’s more than just gut microbiota; it’s environment microbiota – that this has a major role. And for many years, it wasn’t just parasites. People in the Third World had a much lower incidence of multiple sclerosis, and this could have been also from genetic reasons or from susceptibility. But it was not just for multiple sclerosis. All autoimmune disease was much lower in frequency in these populations, and the theory was that most of the people who grew up in developing countries were exposed to large numbers of bacteria and they developed robust immune systems, normal-functioning immune systems that could help them deal with it. And the theory is that in developed countries, the over-usage of antibiotics has aborted normal immune responses, and so in response to that autoantibodies are created and we are suffering the consequence of living too clean a life. And so I think if you look at that argument, it’s not just multiple sclerosis, it really has been mooted for the inflammatory bowel disease, juvenile diabetes, rheumatoid arthritis, and other immune diseases as well.   MSDF Thank you, this has been very good.   Dr. Ludwin Pleasure.   [transition music]   Thank you for listening to Episode Nineteen of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.   Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.   [outro music]

[intro music]   Host – Dan Keller  Hello, and welcome to Episode Seven of Multiple Sclerosis Discovery, the podcast of the MS Discovery Forum. I’m your host, Dan Keller.   This week’s podcast features an interview with neurologist, Dr. Daniel Kantor. But to begin, here's a brief summary of some of the topics we’ve been covering on the MS Discovery Forum at msdiscovery.org.   At MSDF, we publish short, medium, and long articles. The longest News Synthesis articles cover an entire area of MS research. In one recent News Synthesis, science journalist Cynthia McKelvey, provided a primer on epigenetics. Epigenetic modifications are defined as any change to gene expression that happens without altering the  DNA sequence, and they could be the key to understanding heterogeneity in MS. Though the literature on the role of epigenetics in MS is growing, the field remains in its infancy and is not very well understood by many MS researchers and clinicians.   The medium-length articles we call New Findings, and they focus on either a single study or a small group of closely related studies along with comments from experts not directly involved in the studies. An excellent example by Science journalist, Mitch Leslie, explores an iPad app that may become a more convenient alternative to the much maligned Expanded Disability Status Scale, the EDSS. The app mimics four tests in the Multiple Sclerosis Functional Composite test. In an initial study, the app was sensitive enough to discern people with MS from healthy controls. If future trials are successful, it could allow patients to test themselves at home. It could also streamline data collection making the app useful to researchers as well. Our article includes a video demonstrating the app in action.   Then there are the News Briefs—short, meaty, and easy to digest summaries of noteworthy studies. For example, we reported on a large international survey that recorded a high statistical correlation between physical activity and health-related quality of life in MS patients. Another news brief looked at a study showing that evaluating a patient’s treatment preferences may play a key role in how long he or she will stick with a disease modifying treatment. We also reported on a study that described differences in overall brain atrophy between MS patients with oligoclonal bands and those lacking them.   Now for the interview. Dr. Daniel Kantor is a neurologist based at the Neurologique Foundation in Florida who is concerned with MS patients’ access to care. Dr. Kantor met with MSDF editor, Bob Finn, to discuss this issue.   Interviewer – Bob Finn Dr. Kantor, welcome   Interviewee – Daniel Kantor Thank you.   MSDF  In a recent article in MS Focus, you wrote that there are three types of access to care. What are they?   Dr. Kantor  Access to care means many things. Sometimes people think access to care just means access to medications. But access to care actually means access to physicians, access to medications, and then access to all the other diagnostics and other types of testing.   MSDF And how would you grade the US healthcare system on each of those as it relates to MS patients on each of those factors?   Dr. Kantor 2014 has been an important year with the Affordable Care Act as well as with other federal legislation as well as state legislation that's happened. Access to care for some patients has gotten better. People who maybe couldn't get insurance have been able to get it. For a lot of people, though, their access to care has either remained the same or actually their access has come down. What I mean by that is somebody who could see the physician of their choice in the past now, in 2014, has found it increasingly difficult to have access to physicians who are familiar with their care, familiar with their disease state, and familiar with the treatments that are out there.    MSDF You mentioned the Affordable Care Act. How is that specifically affecting access to treatments, access to physicians, access to diagnostics?   Dr. Kantor The Affordable Care Act did several things. One of the things that happened in the Affordable Care Act was the creation of these exchanges or the marketplace. So in states that either ran their own marketplace or that go with the federal marketplace, there are plans that are really "stripped down" insurance plans. And that means that there's more restricted networks – meaning the patient has less choice when it comes to who to see about their disease state – and there's also sometimes more restrictive choices in terms of the medications. So you have less physicians to offer them care, maybe not physicians who specialize in multiple sclerosis, and then that physician also has less choices of what to use. So as you can imagine, those things get compounded, and a patient may have a lot less access to care than they would have had otherwise. A simple example is a patient who did not have insurance and now has insurance. So a patient who didn't have insurance before they've gained access because now they carry a plastic insurance card. But while they may have been paying a reasonable sum to a physician to see them with a cash pay, now that physician is not offered on their health insurance plan. While they may have been part of a patient assistance program with many of the pharmaceutical manufacturers, they may or may not still be eligible for those same patient assistance programs. Meaning that a drug that may have been free to them – or very low priced – may be even more expensive to them now.    MSDF At MSDF, we recently ran an article about a study; it was a survey of neurologists. And the survey was looking at a number of different things. But the neurologists were saying that their patients were happy with fingolimod but not happy with their insurance companies giving them access to fingolimod. What other sorts of issues like that are arising in MS?   Dr. Kantor I think it's a perfect example. Prior to 1993, we had no disease-modifying therapies that were FDA approved. Since 1993, we now have 10 separate branded products. That's an amazing leap forward. Not many fields in medicine have seen that kind of increase and certainly not in the world of neurology. For many patients with other neurological conditions – like Huntington’s disease, amyotrophic lateral sclerosis or Lou Gehrig’s disease, even stroke – they look at MS, and they're jealous. They have seen such an increase in the amount of research. At the same time, however, we see a decrease in the practice. We see it being harder and harder to actually practice good MS clinical care. And so, while patients may have access in some ways to medications that have even more efficacy than our traditional medications, if a patient can't get their medication or has to go through many, many insurance hoops to get there, then that's not good for them.   MSDF What's the solution?   Dr. Kantor The solution really is the neurology, physician, nurse practitioner, and physician assistant and community working alongside the patient community together and engaging our colleagues in the managed care world. Like it or not, in America, healthcare is usually paid by somebody else. Most people do not walk into a hospital or walk into a doctor's office and write the payment themselves. They are either part of an employer group – where the employer is frankly handling much of the payment – or now they're part of exchanges, or they may even be part of a federal program like Medicare or a state program like Medicaid. So the client for the doctor is not really the patient. Our patients are our patient; and we have a Hippocratic Oath; and we have a long, long time of tradition of what we do for that physician/patient relationship. But it's not really a client relationship. That might be good/that might be bad, but it's the fact. In fact, for most practicing physicians, most practicing clinicians, our client is actually the insurance company. And so that means that there's some disconnect between what a patient might think they want and even what the physician might think they want for the patient and what the patient actually gets. So what we need to do, though, is engage these managed care organizations better in terms of recognizing that things like step edits, like prior authorizations those are here to stay. Sometimes some neurologists see them as so unethical that the real prior authorization should be the doctor's prescription. The fact is that that's not the case. And it's going to be very hard to change that system (9:26) unless the person who's actually paying is the actual patient. And so recognizing that managed care organizations are there to manage their medical costs we need to work better at giving them the tools they need. We think that there's no guidelines for treatment of MS; there actually are; there are many guidelines. Each state – if you look at the major insurance company in that state – their prior authorization and utilization management criteria that is the most commonly used guideline for multiple sclerosis in that state. So while we may think, as physicians, it doesn't exist, it does exist; it's just not being written by us. These are being written by pharmacists at either pharmacy benefit management companies or pharmacists at insurance companies, and they're deciding the fate of our patients. We need to take a more proactive stance and work together at developing guidelines that can make sense and that have also "outs". What I mean by that is even if you say that we have a treatment algorithm that works for most patients there's always going to be patients who for some reason or other you don't want to put them through that algorithm. An example may be if you're going to start a medicine that has a potentially high chance for a certain side effect – and you think from past experience that that patient may have that side effect because they've been on similar medications with a similar side effect – then you may not want to put them through that algorithm. You may want to say well they haven't failed the medicine yet, they haven't had an intolerable side effect from this medicine, but they've had from a similar medication. And that becomes a big issue, for example, in the use of one of the oral medication, dimethyl fumarate – also called BG-12 or by the brand name of Tecfidera – where we do see significant GI side effects. For a lot of people, we don't; for most people they tolerate it well. But if you have a patient who has already shown you on multiple other medications for different symptoms that they have sensitive stomach, then even without a diagnosis of Crohn’s disease or celiac, you still would probably want to avoid using that medication. So that's an example where it's not a contraindication listed on the label, it's not an absolute contraindication – and it may not even be considered a relative contraindication – but in the physicians' opinion that patient would have a negative outcome because of that medication that's where they shouldn't go through that algorithm in the same way.   MSDF How successful are you at convincing insurance companies of that?   Dr. Kantor I think we're getting increasingly successful. In 2009, we started a group which was at first called the SouthEastern MS Consortium, or seMSc, sort of like the SEC in football. And then Texas A&M entered the SEC in football so we expanded to the Southern MS Consortium. And we go from Texas east and Delaware south; we take the most liberal definition of the South. Now there are members from California, Minnesota, Pennsylvania, and we're actually about to relaunch and rebrand as the Medical Partnership for MS. And the idea was that prior to this MS neurologists, as well as nurse practitioners, physician assistants, speech therapists, physical and occupational therapists, case managers, social works didn't feel like they had a voice when it came to advocacy for their patients. They felt like the existing organizations didn't always reflect what they're going through and what their patients are going through with taking a proactive stance on some difficult issues but by engaging in a collegial way with the insurance companies. Instead of taking in a stance that every medication should be available for every single patient, we've taken a more reasoned approach of while that may be in an ideal world that's not the world we live in. And so, let's look at the different utilization criteria, utilization management criteria, of the different insurance companies and work with them on a one-by-one basis. So we have constant conversations with insurers throughout this country.   MSDF  Dr. Kantor, I thank you very much.   Dr. Kantor Thank you for having me.   [transition music]   Thank you for listening to Episode Seven of Multiple Sclerosis Discovery. This podcast was produced by the MS Discovery Forum, MSDF, the premier source of independent news and information on MS research. MSDF’s executive editor is Robert Finn. Msdiscovery.org is part of the non-profit Accelerated Cure Project for Multiple Sclerosis. Robert McBurney is our President and CEO, and Hollie Schmidt is vice president of scientific operations.    Msdiscovery.org aims to focus attention on what is known and not yet known about the causes of MS and related conditions, their pathological mechanisms, and potential ways to intervene. By communicating this information in a way that builds bridges among different disciplines, we hope to open new routes toward significant clinical advances.   We’re interested in your opinions. Please join the discussion on one of our online forums or send comments, criticisms, and suggestions to editor@msdiscovery.org.   [outro music]   

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