October 21, 2013 Issue
The Most Powerful Name In Corporate News and Information
Relationship Marketing for Biopharmaceutical Companies
Wendy S. White
Wendy White, founder and president of Siren Interactive, is an innovative leader working for over a decade at the intersection of healthcare, patient empowerment, and online marketing to facilitate improved patient outcomes. Siren Interactive, a relationship marketing agency focused exclusively on rare disorders, enables biopharmaceutical clients to establish credible, trusting relationships with patients, caregivers and healthcare professionals through education, support, and service. Siren was named to the Inc. 5000 list of fastest-growing private companies in America for four consecutive years starting in 2010.
Ms. White, the mother of child with a rare disorder, is a thought leader and speaker on a variety of topics, including building high-trust relationships between patients, caregivers, healthcare professionals and pharma companies within the rare disorder community. In 2012 she was recognized by PharmaVOICE magazine as one of the 100 most inspiring people in pharma.She is a board member and leads the communications committee of the National Organization for Rare Disorders (NORD). Ms. White was the recipient of the 2008 President’s award from the Healthcare Businesswomen’s Association (HBA) where she previously served as president of its Chicago chapter and currently acts as second vice-president on its corporate board. She is also a Trustee of the Boys and Girls Club of the Union League Club of Chicago, and an Elder in the Presbyterian Church. To learn more about Wendy and Siren Interactive, visit www.sireninteractive.com.
is a digital relationship marketing agency focused exclusively on helping
biopharmaceutical companies address the challenges and unmet needs of
patients, caregivers and physicians dealing with rare diseases. As
trailblazers in recognizing the shift in patient-driven decision making, we
are constantly innovating to meet patients, caregivers, and healthcare
professionals where they live.
Chicago, IL 60661
Interview conducted by: Lynn Fosse, Senior Editor, CEOCFO Magazine, Published – October 21, 2013
CEOCFO: Ms. White, what is the concept at Siren Interactive?
Ms. White: We are a niche relationship marketing agency, focused on helping biopharmaceutical companies launch products and develop relationships in the orphan drug space. Orphan drugs are primarily those that are developed for rare diseases, which by definition have patient populations under two hundred thousand in the USA. Eighty percent are genetic in origin and over fifty percent affect children.
CEOCFO: Why a special company focused on that area?
Ms. White: There are two reasons. First, I believe that innovation happens at the margins. Rare diseases are at the margins and we are seeing tremendous innovations in this area as companies are forced to look at new models. I believe companies with rare disease experience will have an advantage with the growing and inevitable trend toward personalized medicine. Second, from a more personal standpoint, I had a child born with a rare disorder. As a caregiver, I experienced first hand the unique challenges facing patients with rare diseases. I realized that marketing these therapies had to be done in a completely new way. Healthcare providers do not have time to understand or deal with diseases they may never see in their practice and caregivers of patients with rare diseases rely heavily on a network of other caregivers, and empowering these caregivers can significantly improve medical outcomes for patients.
CEOCFO: Walk me through a scenario. How do you work with a drug company?
Ms. White: Here is what we do. We are hired by pharmaceutical companies who have orphan drugs in their pipeline for initial product launch or for new indications, and companies that want to build strong patient relationships. Ideally, we can best serve our clients when we get involved at Phase II of a clinical trial. We then focus on how to encourage people from the clinical trial to opt into a direct relationship with a pharma company, retain those relationships over the open label phase, and then all the way through to launch. We specialize in using search engine optimization, social marketing, and online listening to gain a deeper understanding of the space. We then use this knowledge to help develop relationships with patient advocacy groups, patient opinion leaders, and key opinion leaders in order to help facilitate a successful product launch. We know that the more people they have a direct relationship with, the better they are going to do at launch.
CEOCFO: Where there is no advocacy group, how do you bring together the people you need to be interested?
Ms. White: There are currently 7,000 rare diseases in the US and, according to NIH, half of them do not have any organized advocacy group. We have encountered several occasions where there is no organized group. We partnered through a launch for Genzyme, for example, promoting awareness of severe familial hypercholesterolemia, for which there was no advocacy group. The solution was to help provide a space for identified patients to connect. Once they formed an organization, the pharma company could help with capacity building. It is important to have a strong and supported advocacy group as a partner in the rare disease space. One of the charges of helping to ensure a successful launch is to build and support patient advocacy. If there is a small nascent group or several that have different agendas, we help them all come together. That is because everyone wants the same thing, which is to have more patients on therapy and to have them live longer. That is what the pharmaceutical brand wants, too. They do it for a different reason, but that is still what they want. So, we empower the caregivers and this helps the whole system work better for the patient.
CEOCFO: What is the incidence of rare diseases?
Ms. White: The expectations for rare diseases are at about one in ten people. There are over seven thousand different rare diseases affecting approximately thirty million in the USA; three hundred fifty million worldwide.
CEOCFO: You offer prelaunch and post-launch life cycle management. Would you tell me a little bit about the continuing work with the drug after it is launched?
Ms. White: We are very digitally focused, because the internet has been the driving force for patient empowerment. We are constantly looking for how we can listen to the community and provide the value they actually need. These are incredibly expensive drugs and patients need and expect a high level of support. In a way, it is like selling a Rolls Royce to a very engaged buyer. That is the kind of customer experience we advise our clients to provide. We are trying to listen to the biggest unmet needs of the community and also how they talk to each other. We use those things to constantly refine and create a better experience, because compliant and more engaged patients have better health outcomes.
CEOCFO: Would you provide an example where you made some changes based on the feedback you received?
Ms. White: We have spent over a decade working in hemophilia. From listening to the community, we have learned about how they want to find their information and how it makes more sense to them. From this information we redid the basic web platform so that patients could change navigation based on how they were looking for the information, by topic or life stage and this made it much easier for them to find the information they were looking for in the way they were looking for it.
CEOCFO: What about the medical community? For most of these diseases is there a specialized doctor?
Ms. White: Here is the interesting thing about rare diseases. There is not a great model for how doctors of different specialties work together. For example, if you had cancer there is a treatment model. Healthcare providers in oncology know how to work together pretty well. However, we are still working on that model for different specialties in different disease states. What that means is there is more burden put on the patient and caregiver, because there may only be five specialists around the country. If you do not live in a place where you have access to a specialist, you, as a caregiver, end up having to be the one that coordinates between your specialists. One of the things we do for our clients is really lift up the “key opinion leaders” to help share knowledge and educate the community and local healthcare providers. However, we’ve learned that healthcare professionals don’t usually spend time doing research until they need to—not until a patient or caregiver asks about a disease they don’t have experience with, one so rare that they may never see it again.
CEOCFO: How do you deal with the whole scenario that these really are orphan items? How do you deal with some of the frustrations around getting the drug to market and getting people to understand and reaching all of the various groups?
Ms. White: Part of the reason we are called Siren Interactive is that we do not use traditional “going to market” promotional tactics but tactics to support a pure pull strategy. It is about really understanding what is happening with the patients and what is happening with the caregivers, and providing the information they are seeking so that they come to you. That is because they are searching for answers and many times the first thing they do after they get a diagnosis is go online. The frustration is that these are particularly devastating diseases and sometimes drugs do not make it; they do not come to market. When you get to know the patients, it can be heartbreaking.
CEOCFO: With regard to usage; given that it is a challenge to reach the potential market even though it is very lucrative, why are drug companies even working on the drugs?
Ms. White: Why are they doing this? They are doing this because basically the single molecule solutions, the simple solutions that treat big systems and larger patient populations, the blockbuster drugs, are pretty much done. Drug companies are looking for where they can make a difference. There is no unmet need to bring another cholesterol drug to market and the FDA looks for true innovation. They either have to learn how to sell to small patient populations and/or they have to learn how to sell to third world countries. Those are the two big areas of growth. That is the future. Roughly thirty percent of the FDA pipeline is orphan drugs.
CEOCFO: Are you dealing only with the US? Do you work worldwide in your outreach?
Ms. White: We do work globally. Europe is right there with us in the US in terms of regulatory approval. Orphan drugs are just now starting to reach into other countries.
CEOCFO: What surprised you most as you have developed and grown the business?
Ms. White: I was surprised at the drive and sophistication of caregivers and what they have been able to achieve. It is just constantly astonishing to me what they are able to do, when pushed to the wall to help save their children. These are the astonishing people movies are made about.
CEOCFO: Is there competition in your space?
Ms. White: Yes. There was not any when we started. However, several companies have now followed us into specializing in this area.
CEOCFO: When you are speaking with a prospective customer, such as a pharma company, does the history matter or are they looking at what your plan is today?
Ms. White: Experience definitely matters and pharma companies realize this. They are definitely looking at our current plan and that it has been forged from long and deep efforts in understating what is most effective in rare disease therapy marketing.
CEOCFO: How is business these days?
Ms. White: Business is good! Business is very good! We are growing and our phone keeps ringing as our reputation grows. This is our fourth year on the INC 5000 list. We actually expect to really be moving up in the next couple of years.
CEOCFO: What are you on the lookout for? What challenges do you at least think about as you move forward?
Ms. White: There are always challenges. I think about who to partner with and how we can have a tighter and more cohesive experience with all of the different vendors who are working in the rare disease space. Better coordination between the many vendors will lead to better patient outcomes and that is the ultimate goal.
CEOCFO: Why should investors and people in the business community pay attention to Siren Interactive?
Because we are the
leader in an important and rapidly emerging field of healthcare. Those who
succeed in rare disease will be in the best position to deal with the trend
of more personalized medicine. This will be the future of healthcare and we
are well positioned to help pharmaceutical companies succeed in this very
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