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.]

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Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others.  Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica^® and Eli Lilly’s Cymbalta^® as prescribed treatments for your fibromyalgia.

PatientsLikeMe recently analyzed the experiences you’ve shared in our Fibromyalgia Community about Lyrica and Cymbalta.  Here are three key insights we learned:

1. Many of you experience little efficacy from either treatment. More than 40% of Lyrica patients and 50% of Cymbalta patients on our site perceive slight to no efficacy or simply cannot tell.  By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on our site perceive major efficacy.



2. Those of you using Cymbalta experience fewer side effects than those of you using Lyrica. 26% of Cymbalta patients on our site report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on our site report severe side effects, versus 19% for Cymbalta. It is not surprising that more Lyrica patients than Cymbalta patients discontinue treatment and do so more quickly.



3. Many of you attribute weight gain to Lyrica. In fact, of all side effects reported for either treatment, weight gain on Lyrica was the most frequently reported. By contrast as shown below, Cymbalta patients on our site did not frequently report weight gain as a side effect.

So what makes this data interesting?

• There remains a clear unmet need for developing better treatments in fibromyalgia. Based upon your real-world experiences, the existing treatment options are effective for only a minority of patients but cause side effects in a majority of them.  Developing new solutions for fibromyalgia that improve upon the safety and efficacy of existing treatment options remains an opportunity.

• This data provides important insights for those of you using – or considering using – one of these treatments. From what you’ve shared with us on PatientsLikeMe, we see that Lyrica patients more frequently report both major efficacy and severe side effects than Cymbalta patients.  Additionally, you frequently report experiencing little to no efficacy on either treatment.  One of the major benefits of sharing is how much it helps others like you know what to expect and whether or not an experience on Lyrica or Cymbalta is normal.

• This data illuminates similarities and differences between clinical trial data and real-world data. For example, weight gain in fibromyalgia patients was listed as a side effect in Lyrica clinical trials.  However, other side effects were more frequently reported in Lyrica clinical trials than weight gain, including dizziness, somnolence (daytime sleepiness) and headaches.  By contrast, your real-world experiences put weight gain atop the list of Lyrica side effects on PatientsLikeMe.  It’s important that we continue to develop a deeper understanding of the factors driving these similarities and differences in clinical trial data and real-world data.

Learning about the impact treatments have in the real world is only made possible by patients like you who embrace openness and give selflessly to other patients on PatientsLikeMe.  You are proof positive that the voice of one patient can become the voice of many, and that your real-world experiences are not only meaningful – they are essential to understanding what works, what doesn’t, and what needs to be improved.

You keep on saying it and we’ll keep on relaying it:  Treat Us Right.

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.

Our research team here at PatientsLikeMe carries out world-class research in collaboration with academic centers, commercial partners (see “how we make money“), and to help answer questions from our patients. We share our findings with the world through this blog, peer-reviewed publications, and by attending academic conferences like the Consortium of Multiple Sclerosis Centers (CMSC) annual conference. This meeting, now in its 24th year, is for neurologists, nurses, researchers, and other healthcare professionals involved in MS to share their knowledge, network, and form new research collaborations.

In collaboration with our partners at Novartis, our MS community recently participated in a research study exploring the reasons why people don’t always take their disease-modifying therapies as prescribed. Adherence to medication is a big issue in chronic conditions; although we all mean to take our meds as prescribed by physicians, good intentions can fall by the wayside when real life interferes with our plans! Decreased adherence could lead to less medication efficacy, more relapses, and a higher burden of disability for MS patients.

By exploring the messages posted in our vibrant MS forum, and carrying out a review of the scientific literature, we constructed a new questionnaire called the “MS Treatment Evaluation Questionnaire” (MS-TEQ) that sought to explore and quantify the barriers that get in the way of people taking their DMTs as prescribed. As part of the validation process we also showed the questionnaire to some local MS patients to ensure it was easy to understand. In December of 2009, we sent out an invitation to 1,209 carefully selected patients and asked them to complete the MS-TEQ. Within just two weeks, we had complete responses back from 442 patients, a 37% overall response rate.

The MS-TEQ addresses three areas: 1) MS-TEQ Barriers: the barriers faced by patients that stop them from taking their meds as prescribed (e.g., forgetting), 2) MS-TEQ SEs:  the side effects they experience (e.g., injection site reactions), and 3) MS-TEQ Cope: coping strategies they use to try and cope with these side effects (e.g., using an ice cube to reduce pain and itching). Our analysis found that for every 10 points on the MS-TEQ Barriers scale, patients did not take 10% of their medication as prescribed. However, we also found cause for hope; every coping mechanism they used to try and ameliorate their DMT side effects had a positive effect of 4% on the proportion of their DMTs that they took as prescribed.

At the conference’s poster session, we got a lot of interest from attendees and gave away all of our handouts and copies of the questionnaire, so you might be seeing the MS-TEQ in a clinic near you any day now! Our hope is that the questionnaire will help patients and their healthcare providers to understand why someone is struggling to take their medication as prescribed, and to give them a way of measuring this over time. We are currently preparing a manuscript to submit to a peer-reviewed journal to share our findings with the rest of the academic community.

Do you have trouble taking your MS disease-modifying therapies as prescribed? Check out our treatment database. Thousands of our members have written evaluations of the drugs used in MS, including advice and tips on how to stay adherent to your medication to improve your outcomes.