IVC Filter? No thanks!!

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I was scheduled for corrective surgery to my foot but had to postpone due to my husband’s hip replacement surgery (prioritized by me!), and now find myself back on the orthopedic surgeon’s schedule.

I’m honestly thankful for the delay because it gave me time to consider the surgical options.  Initially the surgeon said I would need to be fitted with an inferior vena cava (IVC) filter to catch any potential blood clots from the surgery and prevent me from having a pulmonary embolism or worse.  The delay gave me time to do research and ponder what I had read and fortify myself for an important conversation with the surgeon about why I would not want to undergo this procedure.

The IVC filter is implanted via a heart catherization procedure.  It is designed to be removable, but in about 80% of the time, the filter is left in or it has been unretrievable.   Now I’ve been through a heart catherization and that part didn’t bother me so much but reading about the problems with placing one of these filters, as well as the documented problems that they sometimes come apart and pieces of it can travel to the heart and cause death made me pause.   I researched further and found very little scientifically rigorous research to support the use of the IVC filter – there was even more written that said it wasn’t the best option for most people.

I did my best to not let all the personal injury attorney ads that are running on television these days about IVC Filters and their causing injury and death influence my decision, but I couldn’t exactly ignore them, either.  IT seems these ads are running all hours of the day and night, and include attention grabbing scare tactics.

In my pre-surgery consultation appointment, my surgeon listened to my concerns and then agreed that we could proceed with the surgery if we took other precautions, so I am now self-injecting Lovenox, a blood thinner, for the next 21 days to ward off any blood clot problems.  I would much rather do this than take an unnecessary and unwarranted risk with the implant of an IVC filter.

Thankfully the doctors I have are open to having conversations, answering my questions and even willing to compromise if I propose alternative routes of treatment.  I wouldn’t want it any other way and I hope everyone has this type of relationship with their physicians.

Be well,

Laura

 

 

Many People are #MySupportHero

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Who qualifies as #MySupportHero extends beyond the people who are with me every day on this journey, to the great people who work behind the scenes to support MS research.  There is so much exciting activity taking place in laboratories, especially the  work through the International MS Federation to look for treatments for Primary Progressive MS. I’m not always a great fan of the pharmaceutical companies and how MS drugs are priced and I am often an outspoken critic,  but I am always thankful for the development of new treatments.

A group of unsung heroes I want to acknowledge are the people who make up the core supporters for iConquerMS™ and the fine folks at the non-profit Accelerated Cure Project. Not one of them had a personal connection to MS before they began their work and yet they are 110% committed to support patient powered research and finding a cure for MS.  They listen attentively and respond respectfully to those of us who have MS and recognize our ability to contribute to meaningful and impactful research.

Another group of  #MySupportHero people  I want to mention are the almost 3,000 people with MS who have joined iConquerMS™,  the patient powered research network.  They didn’t have to take the time to donate their information, but they decided we would all benefit from their contributions. If you haven’t already joined us for this research revolution, it’s not too late…. Sign up at www.iconquerms.org

#MySupportHero can be found in many places – my husband, my family, my medical team and researchers, and all of you who believe in the power of people affected by MS.    Regardless of which category you fall into, please accept my thanks!  You are all heroes and deserve a medal!

Be well,

Laura

 

#MySupportHero is a project of MS World and MS drug manufacturer Biogen.

“To honor the unsung heroes who support and make a difference for people living with multiple sclerosis (MS), MSWorld and Biogen are introducing #MySupportHero. For MS Awareness Month in March, we’re going to celebrate and thank those individuals or groups who help people rise Above MS.”   Learn more at http://www.msworld.org/mysupporthero/

 

Holidays, Diets and MS!

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That’s quite the combination to even think about at the same time but I want you to consider helping us think about diet and multiple sclerosis.  The patient-led initiative, iConquerMS™ needs your input on diet and how it might affect your life with MS.  We are surveying members for their input on what might be important to look at and I invite you to join us.  To take the survey you will have to register at the site, but I promise that is simple.  The survey will remain open until January 3.

Here’s is the official invitation to participate  and more of an explanation – I hope it will spark your interest and you will help us create this important look at diet.  Wishing you well, Laura

 

We are writing to share some exciting news about an iConquerMS™ research study that’s being developed. We also want to ask for your input on this study.

Background: Our initial award from PCORI to create iConquerMS™ included funding to work with Dr. Carolyn Schwartz, an expert in the area of patient-reported outcomes research. We decided to use these funds to conduct a research study on a topic that has been directly suggested by iConquerMS™ members.

Looking across all of the research questions that have been submitted to iConquerMS™, one of the most common themes is the use of complementary and alternative medicine (CAM) and dietary strategies in MS. For instance, people with MS have asked about yoga, massage, meditation, the Paleo diet, vitamin D, and medical marijuana, to name a few. They’re curious about how many people have tried these approaches and what their experiences have been like. They’re also interested in sharing their own knowledge with others.

We would therefore like to conduct a study that gives people with MS helpful information about the use of CAM therapies and diet. The results of this study could also be used to design later studies on these topics.

Because this is an iConquerMS™ study and you are an iConquerMS™ member, you can get involved in many ways. For instance, you can help design the study to make sure that the results will be useful to you and others with MS. You can participate in the study once it’s developed. Once the study is complete, you can have access to the data and findings to explore as you like.

As a first step in designing this study, we need some input from you: What information do you want to have when considering a new CAM therapy or diet? Which therapies and diets are you interested in trying and which ones have you used already?

We’ve posted a survey on iConquerMS™ to collect this initial input. To fill it out, follow these three simple steps:

  1. Go to iConquerMS.org and log in at the top of the page. (If you’ve forgotten your password, click here and fill in your email address.)  NOTE from Me- if you haven’t already joined, you will need to create your account before you can complete the Diet/CAM survey
  2. On your iConquerMS™ dashboard, find the “My Research Surveys” area and locate the survey named “Diet/CAM Study – Initial Input Survey” in the “New” column.
  3. Click on the link for the survey, fill it out, and submit. It’s a short survey which should only take a few minutes to complete.

Please send us your responses on or before January 3. Once we have this input, we’ll work with Dr. Schwartz to develop a research proposal and will share this with you as well. The actual study will take place in early 2016.

If you have any questions or need help logging in, just send us an email atiConquerMS@acceleratedcure.org.

We look forward to working with you to develop and conduct the first iConquerMS™ research study!

Happy Holidays!
The iConquerMS™ Team

Recap and wishes for a happy new year!

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In case you missed my recent articles on MultipleSclerosis.net, here is a recap of the ones published from September up to today.   I hope everyone has a wonderful holiday season and healthy and happy new year.  Be well, Laura

 

Feasting and MS

By Laura Kolaczkowski – December 20, 2015

The holidays are here and that means for many of us, it is also a season of gluttony – there’s so much to take in, we often are overwhelmed. There are so… READ MORE

Another Medical Mystery

By Laura Kolaczkowski – December 17, 2015

We recognize the cause of multiple sclerosis is one huge mystery waiting to be solved, but there is another medical question that plagues us almost as much…. What will treating my MS… READ MORE

Speaking of Multiple Sclerosis

By Laura Kolaczkowski – December 2, 2015

The other day I was listening to XM Radio and had it on the Doctor Radio Channel – yes, that is my guilty pleasure. I tune in to in and listen and learn,… READ MORE

Changing Seasons for MS

By Laura Kolaczkowski – November 21, 2015

I don’t know about your feelings, but I am pleased that summer is gone and the heat of the dog days of summer have given way to the cool nights of the fall. The… READ MORE

Mary Poppins & MS

By Laura Kolaczkowski – November 14, 2015

We all get them in our online browsing – those small advertisements that promote something about multiple sclerosis in the hope we will take the time to click on it and learn… READ MORE

When Life Has Other Plans

By Laura Kolaczkowski – November 7, 2015

It’s an easy wager that most everyone can identify with the reality that our life plan rarely follows the course we think it will. Sometimes there are minor changes in our plans, but… READ MORE

What Happens When We Stop DMTs?

By Laura Kolaczkowski – October 31, 2015

We’ve talked about this before – the idea that perhaps the disease modifying treatment (DMT) I’m taking is no longer packing a punch and it is not doing much of anything for… READ MORE

 

Breast Exams & Multiple Sclerosis

By Laura Kolaczkowski – October 29, 2015

October health awareness moments are dominated by pink for breast cancer but as I slowly stepped up to the machine for my annual mammogram, I muttered that it might take a bit longer… READ MORE

MS Truths on the Internet

By Laura Kolaczkowski – October 24, 2015

If it’s on the Internet it has to be true, right? Especially if it shows up on your notices through someplace special like Google alerts, which send me the multiple sclerosis TOP headlines… READ MORE

Siblings & MS

By Laura Kolaczkowski – October 18, 2015

Today is my baby sister’s birthday – ok, none of us are babies anymore so I’ll switch that one to my youngest sister, but it still tells you her birth order in… READ MORE

Creepy MS

By Laura Kolaczkowski – October 15, 2015

We’re heading into the fall season and thoughts turn to the creepy, crawling paranormal things that startle even the strongest and bravest of us at Halloween, especially when they appear from nowhere…. READ MORE

Determination or Stubbornness?

By Laura Kolaczkowski – October 12, 2015

What is it that keeps us going when stopping might be the wiser choice? I was in Washington DC a while back and had some free time and I was excited that my… READ MORE

Interview on the PPMS ORATORIO Study

By Laura Kolaczkowski – October 11, 2015

People with primary progressive multiple sclerosis (PPMS) finally have something to cheer about in a potential disease modifying therapy. Genentech and Roche pharmaceutical companies announced the results of their studies of ocrelizumab in… READ MORE

Knockout Drugs: Ocrelizumab and Biotin

By Laura Kolaczkowski – October 6, 2015

It’s that time again for the MS specialists, researchers, nurses, therapists and journalists to gather for the annual ECTRIMS conference. ECTRIMS, short for the European Committee for the Treatment and Research in Multiple… READ MORE

Got MS? Who Cares?

By Laura Kolaczkowski – October 4, 2015

No, I’m not being rude and flippant with that question. I’ve been thinking about this a lot lately as I read materials on MS caregivers and the articles and responses by people here… READ MORE

Do You Remember?

By Laura Kolaczkowski – October 1, 2015

For me, it’s sometimes yes, and often no. I wish I could find a pattern to what it is that sticks in my memory for longer than a fleeting moment. I know there are… READ MORE

 

LIVING

By Laura Kolaczkowski – September 22, 2015

This article is part of an ongoing series about people who are Making A Difference (MAD) about MS. Visit Ashli Hopson’s, Stuart Schlossman’s, and Lydiaemily’s interviews. Perhaps you are one of the… READ MORE

LIVING

By Laura Kolaczkowski – September 10, 2015

Legalized gambling can be found in 46 states – gambling is legal in all but Hawaii, Tennessee, Utah and Vermont. Each time a person puts money into a casino machine or puts… READ MORE

It’s All About MEE

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No, not me, but MEE – Motivating, Educating and Empowerment, which is the teleconferences theme for the Multiple Sclerosis Foundation.  You might already know I am a big fan of all the free programs made available in the MS community to help us to learn more.  You probably also know, I am a big fan of my MS neurologist, Aaron Boster, Ohio Health.  When you put the two together, I expect really great things.

December 8, 8:30-9:30 PM,  the MS Foundation is hosting a teleconference featuring Dr. Boster, who will speak on Technology to Improve the Treatment of MS.  At my last appointment, he hinted at new MRI imaging techniques for all of his MS patients that will not only look for lesions but also measure brain atrophy and I  hope he will speak about those advances.  That alone could take the entire hour, but I’m sure there are other technology advances he will address as well.

The MSF teleconferences are free, and you can join via phone and also view the presentation via the internet via these links:

Call 1-888-550-5602  then dial code 23441168 when prompted

To view the presentation, go to https://ccc.spiderphone.com/23441168

If you can’t make it Tuesday night live, MSF offers replays on their website  at https://soundcloud.com/ms-focus 

You might want to also check out the other great speakers they have hosted, including MS physical therapist specialist Herb Karpatkin, who did a teleconference last week on Maintaining Independence through Assistive Technology.  Unfortunately there is only the audio and not the slides and he talks about a lot of simple and inexpensive devices that might be useful to us.  A search on the internet will turn up many of these devices he talks about in this teleconference.  Note – it took a while but I finally found the controls for fast forward and pausing these sessions located at the bottom of the page and not at the top where there is a play only button.

As always, I encourage everyone to learn more about MS – the field of multiple sclerosis constantly changes and it’s up to us to educate ourselves.

be well,

Laura

 

 

Looking for Answers?

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We all have questions about multiple sclerosis  – living with it, treating it, finding ways to make it take a back seat in our lives.  We also often lack good resources to hunting down the answers.

 

That is why I try to attend as many of the live MS programs as possible.  Yes, they are usually sponsored by the drug companies and I have to hear the official program first before satisfying my own curious thoughts.  But at the end the speakers are usually open to taking additional questions and it’s always great to have mine and those of others answered for free by the experts.  They often even toss is a free meal … free everything except for the cost of transportation to get to the venue is a good thing, right?

 

There’s an education  program out there that skips all the promotional materials and goes straight to the heart of what we want – the MS Views and News, delivered commercial free.  This non-profit organization out of Florida gets its sponsorship money from the pharmaceutical companies but does not endorse any particular brand,  All the money they receive is unconditional use money and MS Views and News, under the direction of their leader Stuart Schlossman, puts that money to great use by providing education programs that cover a wider range of topics.

 

They have recently expanded their reach beyond Florida and have ventured as far north as Michigan and east into the Carolinas.  A complete listing of upcoming programs can be found on the  MSVN Events Calendar .  They have a program in Indianapolis coming November 18 and I will be there –  stop and introduce yourself if you happen to be a participant in the Hoosier state. Take a look and see if one of their programs is coming close to you soon and plan to attend.

 

If you can’t make it to a live program , they almost always record their programs and then have them posted on their website.  you can view those from the comfort of your own home.

MS Views and News has its Learning Channel on YouTube 

Live or recorded, please take advantage of this incredible resource – you will learn something and that’s always time well spent.

be well,

Laura

 

Ocrelizumab and Biotin’s Race for PPMS Treatment

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ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis), concluded their 2015 annual meeting with ‘late breaking news’ sessions, which included the results from two separate drugs being looked at for treatment in primary progressive MS (PPMS).  This is significant, because as most of you know, PPMS has no official, authorized disease modifying therapy, although several drugs are used off-label.

One drug for PPMS has gotten most of the attention- that would be Ocrelizumab.  The other one in the shadows is Biotin.  I offer here the abstracts for both of these drugs so you might learn a bit more about them and the trial outcomes, although there are still many details outstanding. Note at the end of each, they give more information about the researchers on the project and their affiliations. Yes, there are many of  us who do like reading these, even if all the information doesn’t make complete sense. 

 

Be well,

Laura

 

BIOTIN/ MEDDAY PHARMACEUTICALS

Abstract: 233

Type: Oral LB

Abstract Category: Invited / Oral LB / Poster LB

Introduction: High doses of Biotin, a co-enzyme for acetylCoA carboxylase, a potentially key-enzyme in myelin synthesis, was evaluated over placebo in patients with progressive multiple sclerosis (MS).

Methods: MS-SPI is a randomized, double-blind, placebo-controlled (2:1) trial of oral biotin 300 mg / day in patients with secondary (SPMS) or primary (PPMS) progressive MS. Treatment duration was 48 weeks. The primary endpoint was the proportion of patients who improved at M9 and confirmed at M12, defined as decreased EDSS or improved TW25 of at least 20%. Main secondary endpoints included mean EDSS change, clinical impression of change (CGI and SGI).

Results: 13/103 (12·6%) of MD1003-treated patients achieved the primary endpoint versus none of 51 placebo-treated patients (p=0·0051). The primary endpoint was confirmed by a significant decrease in the mean change EDSS, CGI and SGI in the MD1003 group. The proportion of responders was higher in patients (1) with a baseline EDSS score in the [4.5;5] range compared to patients with a baseline EDSS score in the [6;7], (21.4% versus 9.3%); (2) with no concomitant fampridine administration compared to patients with concomitant fampridine administration (20.7% versus 2.2%) and (3) with SPMS, compared to PPMS (14.8% versus 9.5%). Treatment with MD1003 significantly reduced mean EDSS scores, CGI and SGI in the sub-group of patients with SPMS, and in patients with or without concomitant fampridine administration. Although similar trends were observed in the PPMS subgroup, results were not statistically significant.

Conclusion: Biotin significantly improved MS-related disability and decreased the risk of progression in patients with progressive MS. The effect was more pronounced in patients with SPMS although the relative low number of patients with PPMS in the study precludes robust conclusions. Patients with concomitant treatment with fampridine benefited from biotin in terms of decreased risk of progression and clinical global impression.

Sponsored by Medday Pharmaceuticals

Disclosure:

AT is the principal investigator and discloses travel grants from MedDay

FS is CEO and a shareholder at MedDay Pharmaceuticals (the study sponsor)

CL-F ,GE, MC, CP, SV, JD, MD, PC, OG, GD, D-ALTM, PL, BB JP have nothing to disclose in relation with this abstract

 

 

 

OCRELIZUMAB/Genentech-Roche

Abstract: 228

Type: Oral LB

Abstract Category: Invited / Oral LB / Poster LB

Background: Primary progressive multiple sclerosis (PPMS) accounts for 10-15% of the MS population. There is currently no approved disease-modifying treatment for PPMS. B cells are believed to contribute to the pathogenesis of MS, including PPMS. Ocrelizumab (OCR) is a recombinant humanised monoclonal antibody that selectively targets CD20+ B cells.

Objectives: ORATORIO is a Phase III, multicentre, randomised, double-blind, placebo-controlled study aiming to assess the efficacy and safety of OCR in patients with PPMS (NCT01194570).

Methods: Patients were randomised (2:1) to receive OCR 600 mg (given as two 300 mg intravenous infusions 14 days apart) or matching placebo every 24 weeks for at least 120 weeks or until approximately 253 three-month confirmed disability progression events occurred. Eligibility criteria included an age of 18-55 years, a diagnosis of PPMS (2005 revised McDonald criteria); Expanded Disability Status Scale (EDSS) score of 3.0-6.5 at screening; disease duration (since MS symptoms) of < 15 years in patients with an EDSS score of > 5.0 at screening and < 10 years in patients with an EDSS score of ≤ 5.0 at screening; and documented evidence of elevated immunoglobulin index and/or presence of oligoclonal bands within the CSF. The primary endpoint is time to onset of confirmed disability progression, defined as a ≥ 12-week sustained increase in EDSS score.

Results: Overall, 732 patients were randomised at 183 sites. Mean age at baseline was 44.6 years; 49.3% of patients were female and 94.1% were white. Mean (standard deviation, SD) baseline EDSS score was 4.70 (1.17); mean (SD) duration since MS symptom onset was 6.48 (3.89) years; and mean (SD) duration since PPMS diagnosis was 2.82 (3.22) years. The number of patients untreated with any MS medication in the prior 2 years was 656 (89.6%). At baseline, 26.4% of patients had gadolinium-enhancing (Gd+) T1 lesions; mean (SD) number of Gd+ T1 lesions was 1.0 (4.31); median (min-max) volume of T2 lesions was 6.96 (0-90.3) cm3; and mean (SD) normalised brain volume was 1464.99 (85.96) cm3 on brain magnetic resonance imaging.

Conclusions: The ORATORIO baseline characteristics are consistent with disease characteristics of a PPMS population. As the primary endpoint is an event-driven analysis, the treatment period will be extended until approximately 253 three-month confirmed disability progression events have occurred. The results from this study will be presented after this target is reached.

Disclosure:

Research funded by F. Hoffmann-La Roche Ltd., Basel, Switzerland.

Xavier Montalban has received speaking honoraria and travel expenses for scientific meetings, has been a steering committee member of clinical trials or participated in advisory boards of clinical trials in the past years with Bayer Schering Pharma, Biogen Idec, Merck Serono, Genentech Inc., Genzyme, Novartis, Sanofi-Aventis, Teva Pharmaceuticals, GSK, F. Hoffmann-La Roche Ltd., Almirall, NMSS and MSIF; he is also Editor for Clinical Cases for MSJ.

Bernhard Hemmer has served on scientific advisory boards for F. Hoffmann-La Roche Ltd., Novartis, Bayer Schering, Merck Serono, Biogen Idec, GSK, Chugai Pharmaceuticals, Micromet, Genentech Inc. and Genzyme Corporation; serves on the international advisory board of Archives of Neurology and Experimental Neurology; has received speaker honoraria from Bayer Schering, Novartis, Biogen Idec, Merck Serono, F. Hoffmann-La Roche Ltd. and Teva Pharmaceutical Industries Ltd.; has received research support from Biogen Idec, Bayer Schering, Merck Serono, Five Prime Therapeutics Inc., Metanomics, Chugai Pharmaceuticals and Novartis; and has filed a patent for the detection of antibodies and T cells against KIR4.1 in a subpopulation of MS patients and genetic determinants of neutralising antibodies to interferon-beta.

Kottil Rammohan has received honoraria for participating in advisory boards and consulting for Acorda, Biogen Idec, EMD Serono, Genentech/F. Hoffmann-La Roche Ltd., Genzyme and Teva; he has also received grants from Accera, NIH and NMSS.

Gavin Giovannoni has received honoraria from Abbvie, Bayer HealthCare, Biogen, Canbex, FivePrime, Genzyme, GlaxoSmithKline, GW Pharma, Merck Serono, Novartis, Protein Discovery Laboratories, Roche, Synthon, Teva Neuroscience, UCB, and Vertex; research grant support from Biogen, Ironwood, Merck Serono, Merz, and Novartis; and compensation from Elsevier as co−Chief Editor of MS and Related Disorders.

Jerome de Seze has nothing to declare.

Amit Bar-Or has received personal compensation for consulting, serving on scientific advisory boards and/or speaking activities from Bayer, Bayhill Therapeutics, Berlex, Biogen Idec, BioMS, Diogenix, Eli Lilly, Genentech Inc., GSK, Guthy-Jackson/GGF, Merck Serono, Novartis, Ono Pharmacia, F. Hoffmann-La Roche Ltd., Sanofi-Aventis, Teva Neuroscience and Wyeth.

Douglas Arnold reports equity interest in NeuroRx Research, which performed the MRI analysis for the trial, and consultation fees from Acorda, Biogen Idec, Genzyme, F. Hoffmann-La Roche Ltd., Innate Immunotherapeutics, MedImmune, Mitsubishi Pharma, Novartis, Receptos, Sanofi-Aventis and Teva.

Annette Sauter is an employee and/or shareholder of F. Hoffmann-La Roche Ltd.

Algirdas Kakarieka is an employee and/or shareholder of F. Hoffmann-La Roche Ltd.

Donna Masterman is an employee of Genentech Inc., a member of the Roche Group.

Peter Chin is an employee of Genentech Inc., a member of the Roche Group.

Hideki Garren is an employee and/or shareholder of F. Hoffmann-La Roche Ltd.

Jerry Wolinsky has received compensation for service on steering committees or data monitoring boards for Novartis, F. Hoffmann-La Roche Ltd., Genzyme and Teva Pharmaceuticals; consultant fees from AbbVie, Actelion, Alkermes, Athersys Inc., EMD Serono, Forward Pharma, Genentech Inc., Genzyme (Sanofi), Novartis, F. Hoffmann-La Roche Ltd., Teva and XenoPort; and research support from Genzyme, Sanofi, the NIH and the NMSS through the University of Texas Health Science Center at Houston (UTHSCH) and royalties for monoclonal antibodies out-licensed to Chemicon International through UTHSCH.

Biogen’s Blue Pill Message Misses the Mark

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Dear Biogen,

Upfront I have to ask – What on earth are you thinking with  your recent drug campaign?  I’m talking about Biogen’s multiple sclerosis drug Tecfidera commercial that is now running on national television.  The first time I caught it, I missed the opening and only saw the ‘consult your doctor’ finish- little did I know I missed the parts that would drive me  and many others crazy. I have now seen it several times but if you are not sure which ad campaign I’m talking about please  take a moment and watch it at bit.ly/1OpEUpQ .  After watching it, my comments which I posted at that  site  and here will make sense.

Multiple sclerosis treatment shouldn’t be shown as another ‘tiny blue pill’ ad like Viagra, but that is certainly the message that screams at me from this one.  You show everyone  that if we take this blue pill once a day we can do anything.  I am the first one to be encouraging,  but your ad takes it beyond that. Even people with ‘normal’ health will not hike, swim and go to the fair in one day and still look so good; someone with MS would be out of the day before they hit noon.

It’s the closing of the ad with the shot of the couple on the ferris wheel looking longingly at each other that puts this over the top:  the unknown person holding the blue pill (ok, it’s a capsule but you get the point) in front of them, then the voice over warning of not getting pregnant is a show stopper.  Damn, that could be humorous playing Tecfidera as a Viagra wannabee, but sorry, it is definitely a mood killer for the sex the person with MS  might be contemplating when your voiceover artist has to remind people they might die from this drug because of the rare but often fatal PML.  Your ad agency couldn’t get the timing right on this one no matter how hard they try.

tecfidera

An ad for an MS drug might slide by under the radar, and not make so many of us angry  and disappointed with Biogen  if it weren’t for:

1) It misrepresents MS and perpetuates all the myths we fight regularly but especially  the one that others often think we can just take something like this little blue pill and get over and  above our MS. Thanks for that help, Biogen. You just undermined the struggles of people with MS who are challenged regularly with the misperception and accusation of ‘but you look so good.’

2) A boat load of money was spent to produce this commerical as well as  purchase the television time. How  many people do you really think are going to change therapies because of a tv ad? This was a tremendous waste of money that could have been put into services we could benefit from or donated to a non-profit that provides direct help.

3.)  Your stockholders deserve better use of  profits than this low return on the dollars spent. If you spend this much money on creating an ad, and buying prime commercial time during the network news but then only a few people are convinced to change, what did that cost per person?  I know we listen more to our doctors than to a 60 second television commercial when it comes to selecting our treatment.

4) There’s nothing sexy about MS. Or am I missing out on a side benefit of living with multiple sclerosis?  If a little blue capsule would really make this all better, sign me up now and I’ll ride that ferris wheel around and around.
Tecfidera might be a fine drug but this isn’t the way to deliver  your message. Biogen’s team used to do a great job of understanding us but as of late you seem to have lost sight of the true north.

Please take this ad down, now. Stop running it in the morning, noon and at night on national airwaves. It is doing more harm than your creative marketing team imagined.

-Laura

 

Will Ocrelizumab Hit a High Note?

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Many of you reading this will already know that as of now there is no approved disease modifying treatment for primary progressive multiple sclerosis  (PPMS), only ways to treat the symptoms.  In fact there has been little talk about even doing studies for PPMS treatments that might slow disability progression.  If the headlines are correct, it appears that is about to change and I am excited for everyone with PPMS  to have an official option looming in the not so distant future.

Ocrelizuimab is the drug’s name and the results of phase III clinical trials performed on behalf of the manufacturer Roche/Genentech,  will be reviewed this week at ECTRIMS, the annual meeting of neurology specialists, researchers, therapists, nurses and pharmaceutical companies.  ECTRIMS is short for the European Committee for the Treatment and Research in Multiple Sclerosis, and this year’s meeting is in Barcelona, Spain.  ECTRIMS is the place where researchers share their BIG news – it puts their discussions center stage in the MS world and the press coverage will be extensive.

The advance notices on the presentation Efficacy and safety of ocrelizumab in primary progressive multiple sclerosis- results of the placebo-controlled, double-blind, Phase III ORATORIO study, lead everyone to believe there will be good news from the results. If the results weren’t so great, you can bet the manufacturer would not be putting out their press releases such as Genentech’s Ocrelizumab First Investigational Medicine to Show Efficacy in People with Primary Progressive Multiple Sclerosis in Large Phase III Study

The announement in the ECTRIMS Program book is less bold –

Ocrelizumab

 

 

 

 

 

Incidentally, there will also be the presentation on Friday, covering the use of ocrelizumab in relapsing remitting MS  through the study results of the placebo-controlled,  double-blinded  OPERA I and OPERA II trials.

 

OPERA

 

 

 

 

 

 

 

I have never claimed to understand all the science involved, but if I have this right, ocrelizumab is a not so distant relative of rituximab, a drug currently approved for treatment of rheumatoid arthritis and openly talked about as being used off-label to treat people with MS.  So where are the study results for the use of rituximab in MS?   In Rituximab in relapsing and progressive forms of multiple sclerosis: a systematic review, the author reports there have been four clinical trials  – with the author’s conclusion  “Despite the frequent mild/moderate adverse events related to the drug, rituximab appears overall safe for up to 2 years of therapy and has a substantial impact on the inflammatory disease activity (clinical and/or radiological) of RRMS. The effect of rituximab on disease progression in PPMS appears to be marginal.”

Why haven’t there been more than a few trials to look at ritiuximab and MS?  I can’t give you an official answer but we know it is extremely costly to conduct a clinical trial, and not so coincidentally,  we also know that rituximab loses its drug patent protection  this year (2015) meaning it will soon be available in a generic form.  There would be no great amount of money to be made by proving rituximab is effective in treatment as well.

Then again, maybe ocrelizumab  really is different enough to have a significant effect on PPMS.  Either way, I will be watching the news along with everyone else to see what the assembled  chorus behind ORATORIO and OPERA has to say and hope the results are sweet music for the people who live with PPMS.

be well,

Laura

 

 

 

 

 

 

NARCOMS Now Spotlight

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I’m sending a thank you to NARCOMS, for the mention of my blog and advocacy work in the Fall 2015 issue of NARCOMS Now.   NARCOMS was the first patient registry I signed up for when I was diagnosed with MS in 2008, and I continue to tell people the importance of sharing their information through their  longitudinal study.  My work with iConquerMS™ as a patient driven registry fits nicely with NARCOMS academic research focus.  There are many people doing wonderful things in the MS community and it’s too bad they can’t all be spotlighted.

People living with MS can join both of these initiatives to help researchers move closer to a cure.

NARCOMS Now’s article MS Apps (& BLOGS)  is available at narcoms.org/narcomsnow/msapps/fall2015

Writng this blog as well as authoring articles for MultipleSclerosis.net allow me to share my experiences and knowledge and I hope readers continue to follow along.

Best,

Laura