Momentum is building for additional funding for research to find effective treatments. 

On Monday more than 4 million readers received the Washington Post supplement focused on rare diseases. In addition to updates on the latest progress in the industry, content included personal stories about a few of the all-too-many children afflicted with a rare disorder who are fighting for their lives.

Momentum is building for additional funding for research to find effective treatments. But currently, less than 10% of the 7,000 rare diseases have an FDA-approved treatment. There’s much to do and it can’t happen fast enough.

This campaign was designed to help raise awareness and advocate for treatment options for the nearly 30 million rare disease patients across the United States. Siren Interactive is pleased to have participated. As an industry professional, it’s gratifying for me to see this type of exposure and collaboration on behalf of rare diseases. And as a mother of a daughter with a rare disease, it’s also very inspirational.

It is our JOB to help our patients navigate their medical decisions with compassion, patience, and an open mind 

A recent QuantiaMD.com educational webinar for physicians was entitled, “The Patient Who Knows Too Much” as part of their “Difficult Patient” series. Indignation from patient advocates and a CNN story appears to have prompted a name change to “The Cyberchrondriac.”

You can register for free to view this presentation; however, you can’t see the comments unless you are a healthcare professional. To get a full understanding, I suggest viewing the presentation. It turns out that this case is about a patient with a mental illness who is expressing it via repeated doctor visits using information from the internet. Unfortunately, the physicians who present this case do not clearly express this and it comes across as a bit of an attack on empowered patients.

Leonard J. Haas, PhD, ABPP, starts off by saying: “Patients who present their expertise as telling you how to practice medicine are implicitly discounting your expertise.” I disagree. Often, patients are trying to understand what is going on with them or trying to find a diagnosis or new treatment.
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Pfizer quickly responded by taking down the page, but not before their 24,000 fans were potentially exposed to anti-Pfizer messages 

Last evening Siren web developer Andy Babbitt saw an interesting news item from Pfizer in his Facebook feed. He quickly took some screenshots when he realized that the Facebook page of Pfizer had been hacked.  Pfizer quickly responded by taking down the page, but not before their 24,000 fans were potentially exposed to anti-Pfizer messages and some angry language.  Ongoing online brand monitoring is important, as well as a crisis communication plan.

I’m not going to show the screenshots because I don’t want to perpetuate this hatred and support this kind of activity. However, it’s a reminder that there are plenty of people who have strong anti-pharma views.  Just as with any website, there is always a risk of hackers and security is important.

There are other pharma Facebook pages, such as Johnson & Johnson and Boehringer Ingelheim, with walls that are open to comments. They wouldn’t even require any hacking to take over their feeds like this. I hope this isn’t a sign of things to come.  What do you think?

(Image courtesy of Birgerking on Flickr).

It’s okay to start small – dip your toes in the water 

Yesterday I presented as part of the “virtual” summit, Social Media in Pharma. What was unique was that technology enabled a mix of international presenters and participants. The events were done live via audio with slides presented via webinar. These sessions are archived for ongoing access by attendees.

I moderated a panel discussion with:
Alex Butler, EMEA Marketing Communications Manager, Janssen Pharmaceuticals
Daisy Chhatwal, Senior Manager Regulatory Affairs, MedImmune
Ellen Hoenig-Carlson, Founding Partner, AdvanceMarketWoRx

The panel was asked to address the following questions:
•    Is social media right for pharma?
•    How can pharma get started in social media? What are the first steps?
•    Who in pharma is doing a good job of using social media?
•    What are some industry best practices?

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Frequent communications with the FDA is highly recommended throughout a project to create as smooth a path forward as possible. 

On May 17, I attended the National Organization for Rare Disorders (NORD) Corporate Council meeting in Washington DC. This was “A Day of Dialogue” with FDA senior staff and other key opinion leaders including Christopher-Paul Milne, DVM, MPH, JD, Associate Director of the Tufts Center for the Study of Drug Development and Yann Le Cam, CEO of EURORDIS, the European Rare Disease Organization.

The NORD Corporate Council meets twice a year to discuss issues and opportunities related to the development of orphan products. There was much discussion around making the drug approval process more flexible on a case-by-case basis, and developing ways to reduce failure as early as possible. Frequent communications with the FDA is highly recommended throughout a project to create as smooth a path forward as possible.

As this was a members-only event, specifics can’t be shared, but there were many valuable programs and resources mentioned that are public knowledge and can be shared.

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