March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves.

This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the best quality of life possible.  This means different things to different people as MS varies widely in severity, with approximately 15% of those diagnosed becoming severely disabled.  It could include adhering to a treatment regimen, eating healthy, keeping fit, developing a support network and/or maintaining good emotional health.

It could also refer to nurturing hobbies and interests.  That’s why the MSF has launched the “Show Us Your Best” contest, which calls for creative submissions (such as poems, essays, photo collages, videos, songs and more) demonstrating how people are raising awareness of MS.  The deadline for entry is March 31st, and the grand prize winner will win a cruise for two on MSF’s 2013 “Cruise for a Cause” to Alaska.

With 26,000+ members, the MS community at PatientsLikeMe is one of our largest.  Approximately 80% of the MS community is female (reflecting the fact that MS is at least 2-3 times more common in women than men), and slightly more than half have the relapsing-remitting form of the disease (RRMS).  We also have 1,400+ patients with primary progressive MS (PPMS), 2,200+ with secondary progressive MS (SPMS) and 580+ with progressive relapsing MS (PRMS).

Some of the most commonly reported MS symptoms in our community include bladder problems, brain fog, excessive daytime sleepiness and stiffness/spasticity.  What are our members taking for these issues – as well as for MS itself?  From disease-modifying treatments (DMTs) like Copaxone, Avonex and Tysabri to steroids like Prednisone to symptom-specific medications like Baclofen and Modafinil, our members have submitted hundreds of evaluations for nearly all available treatment options.  (Click on each drug name above to find out how they rate the effectiveness, side effects, cost and more.)

Our members are not only sharing their experiences with treatments and symptoms on their PatientsLikeMe profiles – they’re also chatting about them.  A lot.  To date, the MS forum room has over 786,000 posts! Some of the most frequently used forum tags are CCSVI (“The Liberation Procedure”), Low Dose Naltexone (LDN), SSDI (Disability Insurance), Fatigue, “LimboLand” and Research.  (Click on each category to see what patients are saying about the topic.)

Piqued by all the knowledge found in our MS community?  This is just the the tip of the iceberg – and the kickoff of our MS coverage this month.  Stay tuned for more about what our MS members are sharing and learning during MS Awareness Week (March 10-17th), organized by the National Multiple Sclerosis Society (NMSS).

FOR IMMEDIATE RELEASE

PatientsLikeMe Continues Report Series on Real-World Patient Experiences with Multiple Sclerosis Medications

CAMBRIDGE, MA – November 3, 2011 – In the second report of a series on Multiple Sclerosis (MS) disease modifying therapies (DMTs), PatientsLikeMe reveals that MS patients perceive Copaxone as having comparable efficacy and tolerability profiles to the interferon therapies Avonex and Rebif.  However, all three medications are perceived as trailing in efficacy and tolerability to Gilenya, Tysabri and Betaseron.  In the report’s analysis of 3,200+ patient conversations about MS DMTs from January-June this year, PatientsLikeMe also finds that Copaxone is perceived as safer than other MS DMTs.

“Patients’ sharing of their Copaxone experience may adversely affect its demand as a first line therapy since patients are becoming more influential in their treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “What has become clear through these reports is that real-world evidence will have a major impact on relative pricing for MS DMTs and play an increasingly important role in access decisions.”

This 46-page report – entitled “Does Copaxone patient experience in the real world justify its value?” – quantitatively and qualitatively analyzes 4,100+ MS patients with experience using Copaxone.  Other report sections include:

• The Patient Voice in Treatment Discussions: Copaxone was discussed in 25% of all patient conversations about MS DMTs.
• Copaxone Efficacy and Side Effects: Of the 1,100+ MS patient evaluations on Copaxone’s efficacy and side effects, 30% reported experiencing “moderate” to “major” efficacy, while 26% reported “moderate” to “severe” side effects.
• Copaxone Price vs. Value: Is this medication appropriately priced compared to other MS DMTs given real-world evidence regarding efficacy and side effects?

The report is available for purchase at http://partners.patientslikeme.com/copaxone-report; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]

FOR IMMEDIATE RELEASE

TWO OUT OF THREE PATIENTS REPORT DISCONTINUING TYSABRI WITHOUT DOCTORS’ ADVICE

PatientsLikeMe Releases First in Series of Reports on Real-World Patient Experiences with Top Multiple Sclerosis Drugs

CAMBRIDGE, Mass. — September 22, 2011 — In the first report of a series on Multiple Sclerosis (MS) disease modifying therapies(DMTs), PatientsLikeMe reveals that nearly two-thirds (64%) of patients who report discontinuing the use of Tysabri (n=323) did not cite “doctor’s advice” as a reason. “Side effects too severe” and “did not seem to work” topped the other reasons cited by patients. The report goes on to reveal that patients stop Tysabri due to side effect severity less frequently than patients who discontinue other DMTs for that same reason.  The PatientsLikeMe report is the first of five in a series focusing on how patients are experiencing and evaluating DMTs in the real world.

“People with MS and other conditions have become much more than just consumers of prescription medications, they are now customers who wield a high level of influence on treatment decisions,” says David S. Williams III, Chief Marketing Officer at PatientsLikeMe. “The goal is maximizing health outcomes for patients.  Clinicians can use the real-world insights from this report to collaborate better with patients in treatment planning while manufacturers can use them to better design adherence programs to reduce inappropriate discontinuation.”

This 40-page report — titled “Does Tysabri patient experience in the real world justify its value?” — analyzes the experiences of more than 12,000 MS patients who are taking, or have taken, Tysabri or other DMTs.  In the report, PatientsLikeMe evaluates:

• Tysabri Price vs. Value: Is this drug appropriately priced given real-world evidence regarding efficacy and side effects?
• The Patient Voice in Treatment Discussions: Of the 4,083 patient conversations mentioning one or more MS DMTs from January-June this year, Tysabri commanded 27% share of patient voice.  What percentage of Tysabri-related discussions were focused on progressive multifocal leukoencephalopathy (PML) or JCV (John Cunningham virus) antibodies?
• Efficacy and Side Effects: More than half (55%) of the 500 Multiple Sclerosis patients who have taken and evaluated Tysabri experienced “moderate” to “major” efficacy compared to interferon therapies which average 33% moderate to major efficacy.

The report is available for purchase at http://partners.patientslikeme.com/tysabri; a free abstract is available for download.

Note to Editor:  All data cited from this report must be sourced as originating from PatientsLikeMe®.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on Twitter and the PatientsLikeMe blog.]

# # #

One of the ways we can better understand whether you, as patients, are having a positive or negative treatment experience is to “listen” to the conversation you’re having in our forum.  By understanding whether you are having a positive, negative, or neutral experience with a particular treatment you are taking or are considering taking, we can measure the impact of different events on the overall community.

For example, in 2008 we measured the impact on our multiple sclerosis community of a corporate announcement by Biogen about a serious and sometimes fatal side effect of Tysabri (occurs in about 1 in 1000 patients).  The results revealed that patients were indeed frightened by the announcement, but these patients were also so positive about Tysabri’s benefits, that most planned to continue taking the medication regardless of the risk.

Visualizing Perception of Sentiment
We visualize movement in your sentiment via perceptual maps and longitudinal bar charts.  The perceptual map here shows how patient perception (indicated via forum conversations in one disease community) is moving regarding different medications over four periods of time. (Note: each color represents one medication;  the shading represents the change of perception over time with the darkest shade being most recent).  From period to period, it becomes clear which medications you perceive work the best (i.e., Medication D for efficacy) and those that have the most side effects (i.e., Medication A for safety).

A stacked bar chart graph is a way to further break down the sentiment.  For example, the chart below shows the volume of posts about Medication E’s perceived efficacy, whether positive, negative, or neutral by month over time.  This visual allows us to evaluate if certain events impact your perceived efficacy of a particular medication; to create this graph, we look both at volume of posts (spikes) as well as proportion of posts by sentiment (colors).

Why is that important?  Because studies have shown that people who stay on their medications long term get the best health outcomes.  By measuring patient sentiment of discussions, we can predict if patients may discontinue taking their medications and why.  Knowing that, along with the information you share as part of your profiles, helps in research of how outcomes change over time and the impact of peer influence.

These methods are also used in creating our PatientsLikeMeListen^TM service for industry partners.  Their interest is in understanding aggregate perceptions and what influences patient behavior so that they can keep patients like you on medication.  As part of this service, we show them which types of patients are most likely to stay on medication appropriately and which ones might be better off changing medications.

Our goal in analyzing patient sentiment overall and providing the PatientsLikeMeListen^TM service for industry partners is to amplify your voice to anyone listening:  Treat Us Right.

Today, the PatientsLikeMe Multiple Sclerosis (MS) community welcomed its 10,000th patient member!

As we end 2008, more than 10,000 patients in our community are coming together to share their life experiences on PatientsLikeMe. How much experience is that? Try more than 32,000 YEARS of collective experience with MS.

More members than ever are sharing in-depth health information with each other, having repeatedly seen the value that this provides to others (and to themselves). Our forum is where members convene to find support and talk about all sorts of health-related topics, including MS-related treatments. Copaxone, Avonex, Tysabri, Baclofen, Rebif, Betaseron, LDN and 4-AP and others top the list of treatments discussed this year. In addition to our dedicated treatment evaluation reports, several members also use the forum to keep journals of their experiences with specific treatments to better help others understand these meds. There is also a good deal of discussion on dealing with other aspects of MS, such as depression, steroids, family and relationships, etc. To date, the forum has more than 17,000 posts.

Ready to share your experiences with us in 2009? Check us out to see what patients like you are doing to live their best life with MS.   Happy New Year!

PatientsLikeMe recently released a new PatientsLikeMeListen™ report: “Did the July 2008 PML announcement affect the Tysabri brand?” Among our findings, the report reveals that MS patients retained an overall positive perception of the Tysabri brand despite the July 2008 announcement of two additional PML cases.

When we originally covered this topic back in August,  the discussion among our members was just starting to heat up.  This report analyzes the patient perspectives shared on our site after the initial PML announcement, and shows how they are empowered to educate themselves about this topic.  Take a read and let us know what you think!

Members of our Multiple Sclerosis (MS) community have been discussing this story in the Boston Globe which reports severe adverse events experienced by two European MS patients on the drug Tysabri (Natalizumab). Tysabri is a monoclonal antibody which seems to have a potent effect on MS; the original trial published in the New England Journal of Medicine reported that compared to placebo, MS patients on Tysabri had a 42% lower risk of sustained disability progression over two years, and a 68% reduction in the risk of clinical relapse at one year. Compared to the small and imperceptible benefits from other drugs available at the time, this provided real hope for thousands of patients.

Tysabri was voluntarily withdrawn in 2005, however, after a small number of cases of a rare condition called progressive multifocal leukoencephalopathy (PML). This extremely rare but usually fatal adverse event seemed particularly prone to happen in patients also taking immunosuppressive drugs; part of the standard toolkit in treating MS. It was reintroduced in 2006 but only within a strict protocol to minimize the risk of adverse events.

Since the early days of our MS community, Tysabri has been a hot topic of conversation with several patients reporting that their frequency of relapses had dropped substantially and even that some of their symptoms such as bladder dysfunction had improved too. In total, PatientsLikeMe has 297 patients taking Tysabri, although 35 patients stopped taking it, with the most common reasons being doctor’s advice, side effects, or a perceived lack of efficacy. By recording symptoms on their profile pages, our users inform each other about their experiences with Tysabri. Each patient, then is better informed to make their own decision; and by sharing their outcomes they help the whole community to make an informed choice, too.

The one question on the minds of our MS users is “now what”? A disease like MS is hard to understand for those that don’t have it, it’s an “invisible illness” characterized by fatigue, cognitive problems, and pain. When you have symptoms like this impacting upon your quality of life, how can you make the right choice? Given that nothing in our lives is risk free, what is an acceptable balance of risk between relief from suffering for several years and a small risk of death from an adverse event?

Faced with worsening symptoms, empowered patients educate themselves about the potential risks of any treatment; and along with their doctors make the choice that’s right for them. One of our MS members puts it this way:

I understand those who want the PML issue to be understood because it is a very scary thing, but I said to myself that I’d rather fight back with the strongest drug now instead of waiting for that flare up that one day is irreversible.

That is a person who is trying to make the best health care decision based on all of the available information. The choice is yours and we understand it’s not an easy one to make.