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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I may have misunderstood something, but the numbers look a bit confusing in this report.
It says 500 people with MS had taken and evaluated Tysabri, but also that 323 (64%) had cited reasons other than doctor’s advice for stopping. This seems to suggest that everyone in the survey stopped taking Tysabri, including those who report benefit. Is this survey of just those people who stop taking the drug?
Simon,
Thanks for your comment. We actually performed many analyses within this report. Some analyses, like the n=323 one, focused just on patients who had stopped using Tysabri. Other analyses, like the n=500 one, included both patients who stopped using Tysabri AND patients who continue using Tysabri. Therefore, it is difficult to directly compare and contrast the numbers stated within our press release. I hope this is helpful and regret any confusion this may have caused.
Chris