10 Years of Community Management with EMD Serono

MS Voices

By Sven Larsen

Community management is a hot topic in digital right now and that trend is impacting Pharma as much as any other industry. From the growing power of the e-patient movement to unbranded patient support sites, it seems like everyone is looking to build or support disease state centered communities these days. So it may come as a surprise to some that a few pioneering Pharma companies have been creating just such a community since 2002.

Back in those halcyon days, almost no one was using social networks or creating communities on line. But that didnt prevent Serono (now EMD Serono) and Pfizer from using the technology available at the time. On March 7, 2002, their relapsing MS treatment Rebif (interferon beta-1a) was approved by the FDA. The next day, physicians received a fax from the company explaining that they had created a call center to provide support for users of the treatment. The companies understood that the self injectable drug category required more education and support than other treatments and they wanted to make sure that they provided ample guidance for the new community of Rebif users.

The call center was made up of nurses who would provide one on one guidance on proper usage of the drug (including injection training) and give tips for compliance and other issues surrounding treatment. Nurses were even available to provide training for patients in their own homes. The call center was an instant success and continues to this day, marking 10 years of support for the MS community. Of course, the program has grown substantially since the early days and call center staffers now handle a much broader range of issues surrounding MS (not just Rebif support). The call center staffers receive regulatory retraining on a semi-annual basis so theyre well aware of any issues regarding AE reporting.

EDITOR’S NOTE : At EMD Serono’s request we are including the following information about Rebif in this article

Rebif is indicated for the treatment of patients with relapsing forms of MS to decrease the frequency of clinical exacerbations and delay the accumulation of physical disability. The efficacy of Rebif in chronic progressive MS has not been established. Available in 22 mcg and 44 mcg prefilled, preassembled syringes and a titration pack.

Important safety information

Rebif is contraindicated in patients with a history of hypersensitivity to natural or recombinant interferon, human albumin, or any other component of the formulation.

Rebif should be used with caution in patients with depression, a condition that is common in people with multiple sclerosis. Depression, suicidal ideation, and suicide attempts have been reported to occur with increased frequency in patients receiving interferon compounds, including Rebif.

Severe liver injury, including some cases of hepatic failure requiring liver transplantation, has been reported rarely in patients taking Rebif. The potential for liver injury should be considered when used in combination with other products associated with liver injury.

Anaphylaxis and other allergic reactions (some severe) have been reported as a rare complication of Rebif.

Caution should be exercised when administering Rebif to patients with pre-existing seizure disorders. Seizures have been associated with the use of beta interferons including Rebif. Leukopenia and new or worsening thyroid abnormalities have developed in some patients treated with Rebif. Regular monitoring for these conditions is recommended.

Female patients should be warned about the potential risk of miscarriage; discontinuation should be considered if pregnancy occurs.

Potential serious side effects with Rebif include hepatic dysfunction, depression, suicidal ideation, suicide attempts, risk to pregnancy, allergic reactions, and injection-site reactions, which include redness, pain, and swelling. A few patients developed necrosis at the injection site, which resolved with conservative management.

The most common side effects with Rebif are injection-site reactions, flu-like symptoms, depression, abdominal pain, elevated liver enzymes, and blood abnormalities.

As Jo Scanzillo, Senior Manager, Nursing Support and Training Functions for MS LifeLines explains, “We work with the physicians offices to help patients but we make sure to never get in the middle of the doctor-patient relationship. The key to the longevity of our program has been our ability to go from treatment-centered discussions to talking about the whole broad range of issues affecting those living with MS and their caregivers. Our working philosophy is to be flexible, adapt and be willing to change when needed.

The success of the initial call center program was soon complemented by a Peer Connection program (an outgrowth of EMD Seronos already existing Ambassador program). This precursor to social networking allowed those living with MS to talk to fellow patients via telephone. A third party group (sponsored by Pfizer and EMD Serono) would connect those living with MS in the same geographic region. It was just a matter of time before many of these mentor/mentee relationships turned from support discussions to offline friendships.

Pfizer and EMD Seronos Facebook Page for the MS LifeLines project (launched in 2010) was the next logical stage in this communitys development (full disclosure, Pixels and Pills parent company, Zemoga built the page). As Michael Utz, EMD Seronos Director of US Marketing Neurodegenerative Disease, explained, “Were continually looking for new and innovative ways to support the MS community and digital was a natural outgrowth of our call center and Peer Connection programs. People living with MS are always looking to share information and as they became more aware of the tools available, there was a hunger for a digital connection. While Utz has been happy with the response to the social media efforts surrounding MS LifeLines, he expects even more innovative communications with the community are just around the corner. “Were looking at You Tube and smartphone apps as other channels that we can use to reach out to the community. Were also looking at streaming some of our call center and Peer Support sessions to rural communities where geographical proximity is an issue. Were always striving to provide service to a larger group than just therapy users. Our commitment is to the diverse group of people who make up the MS community.

With ten years of experience under their belt, the MS LifeLines team knows full well that “community is not just a hot trend but also an integral part of their relationship with their HCPs and health consumers. And they continue to embrace digital tools to ensure that this community gets the best support possible.

Happy 10th Anniversary, MS LifeLines!

Please see accompanying Rebif Prescribing Information and Medication Guide for important safety information.

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