2 posts tagged “DMTs”

MS PATIENTS PERCEIVE COPAXONE EFFICACY AND TOLERABILITY AS COMPARABLE TO REBIF AND AVONEX

Posted November 3rd, 2011 by

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.

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“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 https://blog.patientslikeme.com]

PatientsLikeMe member lscanlon


Multiple Sclerosis: Sustaining Care, Seeking a Cure

Posted July 15th, 2010 by

cmsc-logoOur 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.

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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.

PatientsLikeMe member pwicks