A posting on the website of an online rare diseases group, which I’m a member, described the frustrations and despair of Antonieta, a Brazilian mother whose 33-year-old son has a rare disease known as Cerebrotendinous Xanthomatosis, or CTX. Since 1993, he had been treated with a medication that had changed manufacturers numerous times. The medication was now being offered for a price 10 times higher than what Antonieta was used to paying, and she could no longer afford the treatment that her son needed for survival. Antonieta, who had already pursued legal measures within her country to get help paying for the medicine (to no avail), had run out of options. She ended her post: “I don’t know what to do…”

The disease sounded familiar, so we at Compass researched it and tracked down the pharmaceutical company that is now in the process of filing an NDA for the drug. At that point, we sent an email to both Antonieta and the president of the company to put them in touch with one another.

That simple online introduction was all it took.

Antonieta thanked us very much for reaching out to her, and in 24 hours we got word from the pharmaceutical company that Antonieta will now be receiving the drug her son so desperately needs through the organization’s compassionate use program.

It was a great feeling knowing that one simple action could have such a profound impact on the lives of others. As a full-service patient marketing agency we understand the intricacies of marketing to patients—from message development and disease education to patient advocacy and support services. But it’s always rewarding to hear from patients directly to know that our contributions make such a difference.

Compass Healthcare Marketers will be holding our 5^th Annual Innovation Lab: Translating the Patient Experience into Commercial Success, to answer these essential questions. Join us for one day at San Francisco’s Cavallo Point lodge where rare disease industry professionals will come together to talk about the important role of the patient in their commercial planning, as well as address key topics in the orphan drug space.

This “closed-door” session—no media or regulatory agents—with leaders from several orphan drug companies and expert consultants will provide a safe and intimate environment in which we can have a very honest and productive dialogue about:

• The unique commercialization challenges in the rare disease and orphan drug space
• Pricing, reimbursement, and market access strategies for orphan drugs
• Social media’s unique and significant influence on the patient experience
• How to find, acquire, and inspire patients with rare diseases
• Case studies of orphan brands leveraging the patient experience for commercial success

Vew the complete agenda or register now to attend this exclusive, industry-only, “closed-door” event to learn more about understanding and leveraging the patient experience in the rare disease and orphan drug space.

After the workshop, we will also be hosting a wine tasting event featuring Cavallo Point’s extensive collection of Old World and New World wines.

We look forward to seeing you on the 20^th in San Francisco!

Anyone can say they want to engage the patient and understand their experience, but unless the patient believes it, the brand will never be accepted in the community (community = patients, caregivers, associations, and organizations).  Intent and action, not words, will drive their belief. These patient groups are cynical (who can blame them?), so it really is about actions—not statements or PR programs.  Influence will only happen if you create and deliver actual interactions, programs, and engagements with the various patient groups based on what they actually need and want, in the form they utilize.

What programs really demonstrate true honest engagement? There is no perfect tactic, program, or promotion. The best way to ensure success comes down to intent. Intent can only be accomplished if it is developed with and by the community with whom you are trying to engage.

Last year Novartis showed us how not to build an unbranded education site, and received an FDA letter because of it. It was obvious the intent of GISTalliance.com was not to educate, but to promote Gleevec. The look and feel of the site was “perceptually similar” in terms of color schemes and layout to the Gleevec site. The site only discussed and provided information about aspects of the disease that Gleevec treats, including direct links to the Gleevec product website with little or no discussions about other indications.

For BioMarin and their drug Kuvan, which treats PKU, it not only took intent, but action to connect with the PKU community. BioMarin found itself defending against patient groups who were questioning the cost and benefit of a drug that provided marginal efficacy over strict diet modifications. BioMarin, on the other hand, thought they were providing a much-appreciated solution for parents of children (especially teens) with PKU, who found it almost impossible to adhere to the diets and needed some additional help. So BioMarin engaged the community and discovered that patients with PKU felt isolated and alone, which was exacerbated by the strict diet they had to follow, making them feel further isolated from friends and family. BioMarin continued their community engagement efforts by launching PKU.com, a disease education and community website to support and enhance dialogue among the PKU community. They didn’t just say they were supporting the PKU community—they did it. As a result, the site is the lead destination for PKU patients, garnering 5,500 unique visitors in the first month, as well as 86 registered members and 18 blog posts.

So if you have or are developing a product in the rare disease space focus less on the management of your message and more on your relationship with the patient community. By doing so, together you will identify the support, tools, and information they need to better manage their condition and achieve the best outcome possible.  

As a marketing tool, video offers distinct advantages. It demands engagement—consumers would rather “watch” than “read” while they’re online. It’s also easy to digest and understand. And above all, video tells a story. While video has been shown to deliver important advantages across all industries, within the pharmaceutical industry, the medium is actually ranking above the curve in terms of engagement. Why is this?

One reason is that video is used not only to promote but also to educate, which is particularly relevant to pharma. Video can help bring your audience’s awareness to a higher level by providing a different level of understanding. It can also help to humanize your company and engage HCP’s and patients in a more emotional, empathetic, and personal way. Consider a video in which a patient describes his or her experiences living with a serious or rare condition. Patients see themselves in those they’re viewing and thus are able to connect in a personal way with your brand and your message. In this way, video offers a more engaging and intimate understanding of your brand beyond a mere listing of product attributes that might appear elsewhere.

By its power to educate, promote, and engage, video can help move your audience along the continuum from awareness to engagement to acquisition and ultimate loyalty.

Few of you are old enough to remember this Dr. Doolittle, two-headed, camel-like animal, but some may recall a time when there were about 8 TV channels, prime-time TV ruled and there was no Internet. Well times have changed and with them, the entire way we reach our targets and market to them.

At the risk of being too broad, within the past year, we have made the conversion from any type of “push” advertising to almost exclusively a “pull” advertising society.

What does this mean?

“Push” advertising describes the interruptive way we used to “push” our ads at the unsuspecting consumer. This poor sop would be reading an article or watching a show and—blam—he would get hit with an ad. It didn’t matter if the guy watching the news wasn’t in the market for Playtex Living Gloves; he saw it anyway. Inefficient you say? Not exactly. Back then, we marketers identified a single benefit and a single target, wrote our ad, bought a 30-second slot on prime time TV and hit 75% of our audience—easy, efficient.

As we all know, those days are over. With DVR’s, Hulu, iTunes, etc, consumers can now select what they watch as well as when and how much. In fact our children are the first generation since the advent of TV who will watch less of it than the previous generation did.

So the consumer is in control. Therefore we, as marketers, can no longer “push “ our message at them. They will decide what they want to “pull” down and devour.

Good News. Bad News.

The good news? With fragmented yet targeted marketing vehicles–smartphones, the Internet, satellite radio, etc.—we cannot only find, but pinpoint our target consumers.

The bad news? We must deliver content that the target will voluntarily select or pull. Your product not only has to be relevant but consumers have to be interested in what you are saying about it. Crack that code and you win.

Being Internet marketers for the past 7 years, we have always understood and valued great content and tools. Since online has been the lead vehicle people use to proactively search for specific information, our job has always been to put content they value in the right place for them to see and use.

Now it’s time for this type of content to be utilized in all forms of marketing.
If you build it—relevant and valuable content—they will come—and consume it.

The award recognizes the outstanding contributions made on www.pku.com, an unbranded community website that leverages the strength of social media to unite members of the Phenylketonuria or PKU community. The site also educates healthcare professionals and patients about the serious effects that PKU can have on the brain. The site represents one of the most advanced community sites in the pharmaceutical industry and the first to directly leverage Facebook-style functionality, such as friends, groups, pictures and blogs.

“Compass did an outstanding job creating a support community for patients, caregivers, family and friends on PKU.com,” noted judges of the MM&M 2010 Awards. Added one judge: “[The site is] a true social network bringing authenticity and real life experience.”

“With PKU.com, we knew we had to take a unique approach,” said Peter H. Nalen, President and CEO of Compass. “Patients with this rare disease cannot easily connect with one another. By leveraging the power of social media, we were able to unite these patients, and thus empower them to make informed decisions that affect their health and lifestyle.” Visitors to the site now average 7,500 per month.

The MM&M Awards recognize exceptional creativity and marketing effectiveness in healthcare. In just four years, the MM&M Awards has evolved to become the premier program in the industry.

About Compass Healthcare Marketers — www.compasshc.com

Compass Healthcare Marketers, with offices in Princeton, NJ and San Francisco CA, is a leading, full-service marketing communications agency focused on specialty healthcare companies. We develop innovative marketing solutions that help improve the health of people with serious and chronic conditions such as diabetes, pulmonary hypertension, melanoma, and hemophilia. Our reputation as smart marketers stems from our strategic approach to marketing, which includes building insightful analytics into every program we develop. These strengths, combined with our company-wide belief in honesty and integrity, are what drive our organization and keep our clients coming back.

“Our primary reason for this expansion is to better service the needs of our growing client base in California,” said Kristin M. Keller, Executive Vice President of Compass Healthcare Marketers, who has relocated to the area to help establish the agency’s West Coast office. “Clients are utilizing our services now more than ever to develop comprehensive marketing programs—everything from consumer branding to patient advocacy to relationship marketing efforts. This level of involvement necessitates us having a strong, hands-on local presence.”

Compass, which is headquartered in Princeton, New Jersey, currently services a broad range of clients in both the Bay Area and in Southern California. These companies include Actelion Pharmaceuticals, Baxter, Ipsen, Prometheus Therapeutics and Diagnostics, and Santarus, Inc.

“We look at this move as both an opportunity to better service our existing clients and to continue to expand our business,” noted Peter H. Nalen, Compass President and CEO. “California has a number of specialty pharma and biopharmaceutical companies, that like us, are focused on helping those affected by serious and chronic conditions. We are now in the best position to meet these opportunities.”

About Compass Healthcare Marketers — www.compasshc.com

Compass Healthcare Marketers, with offices in Princeton, NJ and San Francisco CA, is a leading, full-service marketing communications agency focused on specialty healthcare companies. We develop innovative marketing solutions that help improve the health of people with serious and chronic conditions such as diabetes, pulmonary hypertension, melanoma, and hemophilia. Our reputation as smart marketers stems from our strategic approach to marketing, which includes building insightful analytics into every program we develop. These strengths, combined with our company-wide belief in honesty and integrity, are what drive our organization and keep our clients coming back.

Media Contact:  Kristin Keller

gowest@compasshc.com

In February 2004, the US FDA’s Division of Drug Marketing, Advertising and Communications (DDMAC) drafted guidelines governing the creation of unbranded websites, which spelled out rules that marketers should follow. Breaking a number of these rules resulted in Novartis receiving warning letters from DDMAC back in April about two of the company’s unbranded sites: www.gistalliance.com and www.cmlalliance.com.

Where Did Novartis Go Wrong?

Both Novartis sites were deemed to be overtly promotional of the Novartis therapy, Gleevec. Here’s where the sites went wrong:

• Promoted the use of Gleevec outside its indication and made unsubstantiated dosing-related claims
• Were “perceptually similar” in terms of color schemes and layout to the Gleevec site
• Included “representation or suggestion relating to a particular drug,” including: direct links to the Gleevec product website; references within a publication on the site to a pivotal Gleevec trial; and footnotes on the site that referenced imatinib (Gleevec’s established name), and prominently featuring the Novartis logo
• Did not provide fair balance. While unbranded awareness and education programs are not subject to fair balance requirements, the FDA has taken the stance that it is required if the unbranded program “impliedly identifies a particular drug”
• Mentioned a tyrosine kinase inhibitor (”TKI”) for the first line treatment of GIST and CML. Gleevec is the only TKI indicated for first-line treatment of chronic phase CML, and the only TKI indicated for first-line treatment of GIST
• Contained registration opt ins without being clear they were opting into receive “product information” that delivered Novartis communications, promoting Gleevec

Following the Rules

If you’re looking to develop an unbranded or disease awareness website, be sure to adhere to the guidelines outlined by DDMAC:

• Be clear, accurate and reinforce a public health message
• Refer consumers to an HCP for more information
• Ensure the unbranded experience has its own creative identity
  • Use a separate color palate, as well as different visuals and models, from the branded experience
• Review treatment claims as if the piece was branded
• Follow the same strict regulatory guidance in the way the statements are crafted and substantiated
• Provide balanced treatment discussions
• Provide clear opt-in options for consumers, including a double opt in procedure

Following the rules not only helps you avoid a warning letter, it allows you to capitalize on an opportunity to better educate and enhance the value of your sites. In short, you can break through the clutter without breaking the rules!

On July 29, 2010 the FDA issued a warning letter to Novartis for the Facebook share button and sharebar on the Tasigna product website – both consumer and HCP sides. The issue was that when a user clicked the share button, it displayed a post on the user’s Facebook wall. The post was a statement (that varied by page) that typically included the brand name and the indication. It was a brief statement with a link to the website, so of course it did not include fair balance. Further, language within the statement used on some of the pages used superiority language that FDA had previously told them not to use.

So, what does this mean?

First, just as in the instance of the Gleevec unbranded letters this spring, it actually changes nothing. Novartis, for the second time this year, simply violated known and understood DDMAC policies. It’s shocking, actually, that after the unbranded letters, that they did not do a better job following well established rules in the rest of their communications (particularly interactive communications).

This letter is certainly NOT a new FDA policy prohibiting the use of share tools or social media in branded pharma. It does reinforce the FDA policies regarding claims and balance and that channel and format does not change the rules. As with all things, the devil is in the execution.

What concerns us, is that, as with the unbranded Gleevec letters, the industry will overreact and start pulling back on their investments or efforts within social media. This should not be our response; we should take this as confirmation that DDMAC sees the internet and social media the same as every other channel and applies the same rules. We as an industry just need to accept that fact and follow the rules!

New Name Reflects Greater Breadth of Agency Solutions

PRINCETON, N.J., July 22, 2010 — Compass Healthcare Communications announced today that it has changed its name to Compass Healthcare Marketers.

“We realized that our company name needed to better reflect the type of organization we are and the breadth of services we offer our clients,” said Peter H. Nalen, President and CEO of Compass Healthcare Marketers.

Acknowledging that “communications” can be a general and somewhat misleading term, Nalen went on to emphasize that Compass serves as a true marketing partner to its clients. While communications solutions are, in fact, part of the agency’s service offerings, Compass equally provides critical marketing strategy and execution solutions.

“Marketing has and always will be central to who we are,” noted Nalen. “We focus first and foremost on providing smart marketing solutions for our clients. We then consider the necessary medium required to optimize results.”

Compass Healthcare Marketers offers a full range of marketing services for healthcare companies including interactive programs, analytics, relationship marketing, public relations, and branding programs.

About Compass Healthcare Marketers — www.compasshc.com

Compass Healthcare Marketers is a leading, full-service marketing communications agency focused on specialty healthcare companies. We develop innovative marketing solutions that help improve the health of people with serious and chronic conditions such as diabetes, pulmonary hypertension, melanoma, and hemophilia. Our reputation as smart marketers stems from our strategic approach to marketing, which includes building insightful analytics into every program we develop. These strengths, combined with our company-wide belief in honesty and integrity, are what drive our organization and keep our clients coming back.