For those of us who have worked in the orphan disease space over the years, there is feeling of solidarity as it has been a professional proving-ground for healthcare PR practitioners. Our lasting challenge – to engage with diverse (and at times, unyielding) stakeholders, including patient activists and their families, advocacy organizations and their Boards, consumer watchdog groups, payers/providers, caretakers, and key opinion leaders – can be exhausting but at the end of the day, extremely rewarding.
Most of these stakeholders are sophisticated and have deep-seated beliefs that can interfere with the practitioner’s chief objectives. Working in this space demands a strategic mind, experience, grit and determination, but most vital of all is the ability to step back and listen to the orphan patient community. They have a fascinating way of cutting to the heart of the matter.
The purpose of this article is two-fold: first, to provide a background in the area of orphan drugs and explain some of the fundamental communications challenges faced when your audience is small and super-targeted; second, the article offers a look at some effective methods of reaching and impacting these audiences.
It can be argued that viral communication and social media techniques are still in a formative (perhaps embryonic) state when it comes to the highly regulated world of drug and medical device marketing. But we wrestle here with what Web 2.0 strategic approaches make sense right now, and what some top people in the orphan drug space are working on.
Orphan Drug Act: a refresher
The term ‘orphan drug’ refers to medicines that treat a rare disease affecting fewer than 200,000 Americans. The word “orphan” suggests that these drugs – no matter how essential to the life of the patient – would have been left undeveloped but for significant government incentives for the sponsor company.
Historically, pharma avoided small patient markets because of the exorbitant costs of R&D and the paucity of potential financial returns. The Orphan Drug Act was signed into law in 1983 to provide the necessary economic incentives for drug firms to invest and develop treatments for rare diseases in small patient markets.
The Act provided seven years of market exclusivity, a package of tax credits and an exemption from the $500,000-plus “user fee” that the FDA generally receives from drug sponsors. Since the Act was signed into law, more than 200 orphan drugs have been approved by the FDA for use in the US.
Devising a communications strategy
Communicating to the motivated patient with an orphan disease requires constant vigilance and attention to your message. How effectively we can engage our audience becomes a crucial challenge.
How carefully and astutely we build our message platforms, and who we select and train to carry those important messages takes on greater importance. But a key differentiator to large disease markets is determining what channels will engage effectively this self-reliant audience.
If we were to point to the one critical mistake that people make when devising a PR strategy for an orphan disease, it is not being fully aware of what is going on ‘out there’. In other words, the practitioner and in turn, the client, doesn’t take the time to do the background media and online research necessary to determine what others are already saying about the disease, competitive drugs, and specific issues that may impact the success or failure of the treatment.
In any two-way communication, a paucity of disease knowledge and depth is quickly revealed. These patients are often sophisticated and vocal when it comes to treatment. Any communications misstep can quickly hurt a company or brand reputation, and send it off course rapidly and indefinitely. And, of course, the internet makes this play out in real time.
Share of conversation
There are new and very important search tools to measure what is being said, and how much of the share of conversation (SOC) you have achieved in your disease space. In other words, you can determine precisely who is talking about your disease state, product and/or competitors products online. This SOC database is something that many companies offer clients and is quickly becoming an agency-wide standard monitoring approach. With SOC monitoring and analysis, we are looking at standard online advocate techniques like bloggers, Twitter, Facebook and YouTube. Social and digital media tools are even more valuable when your audience is niche, and must be part of any plan.
Understanding the online advocacy landscape
One of the more interesting programs in orphan diseases is cystic fibrosis. Despite its small real-world community of around 30,000 patients, efforts to encourage education and support have been comprehensively organized, many of them online. For instance, CysticFibrosis.com has more than 8,000 registered members, over 300,000 searchable messages and more than 1,000 active bloggers. There are more than 500 cystic fibrosis communities on Facebook, and the two lead advocacy organizations (Cystic Fibrosis Foundation and Boomer Esiason Foundation) have a prominent voice on Facebook, YouTube, Twitter and MySpace.
Another orphan disease that is starting to receive a disproportionate share of voice and conversation online is Huntington’s Disease, a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. In addition to a new viral PSA campaign featuring a gene positive patient from the television hit House, the Huntington’s Disease Society of America (HDSA) has been one of the smarter and earliest adopters of digital media.
Fred Taubman, director of marketing development and communications at HDSA, notes that the use of digital media has been particularly valuable in providing the Huntington’s Disease community with instant news on clinical trials, treatment advances, and workplace and insurance discrimination information. Further, digital media affords a better economic model and more efficient and interactive approach for advocacy groups.
“HDSA now can provide and get instant feedback on training materials and reference guides for caregivers, physicians and other interested parties for pennies on the dollar,” Taubman adds. More importantly the community can participate anonymously, through non-identifying email addresses, which bypasses concerns about potential workplace or insurance discrimination.
Finally, we were involved in the pulmonary arterial hypertension (PAH) community for many years, and they have produced incredible buzz online and off, leveraging prominent politicians, celebrities and everyday people.
PAH is a chronic and incurable rare lung disease with fewer than 50,000 diagnosed patients in the US. Rino Aldrighetti, president of the Pulmonary Hypertension Association (PHA), and his marketing team have been leveraging an enormous number of listservs, allowing PAH committees to make significant progress on advocacy, awareness and other important activities. They have been using e-learning events and moderated chats with expert speakers for years.
Recently, PHA launched a YouTube Channel with more than 60 videos available telling patient stories and providing education. PHA has a tremendous reach into the patient community that could be leveraged to initiate dialogue, enabling companies to go narrow and direct to efficiently reach end users.
What is the industry doing with Web 2.0?
Given the definition of orphan diseases, the universe of patients is small and dispersed. These new tools allow people to come together to share practices, gather information and get consensus in a way that would otherwise be impractical or impossible, especially in the current economic climate – plus it’s a self-targeting paradigm.
Pharma companies like Johnson & Johnson, Novartis and Boehringer Ingleheim are beginning to dip their toes in the social media space. However, while significant progress is being made, they are clearly struggling to determine just far they can go. The vast majority of what they are doing is corporate, and it is not all that “interactive”.
Twitter, Facebook, Youtube and the like are, for the most part, used by product communications as another conduit for information that goes through traditional legal channels. For example, press releases are posted, and articles and web sites are recommended, but conversations are rare.
As this publication goes to print, regulatory guidance is still at an embryonic stage and ill-equipped to deal with the speed at which social communication online has moved. According to Bob Pearson, president of the Blog Council and founding partner at Common Sense Media Group, most online communication in healthcare is corporate, which represents a great first step.
“The giant opportunity here is to connect with patients and to empower them to connect with their peers. There are certainly challenges, but patients are already learning from one another online. It’s now time for companies to catch up with patients on the social media front.”
One example of a massively creative “portfolio approach” to interactive media is Centocor’s MyInnerstate.com campaign. They created a wonderful documentary, with movie premieres in more than a dozen cities, focused on three patients with various auto-immune diseases including the orphan Crohn’s disease. While the documentary isn’t branded, the diversity of use of the film online and its viral achievements are fantastic. There are so many channels for patients to react to the inspirational lives of the patients that you have to applaud the company’s understanding that Web 2.0 is more than “tweeting” press releases.
More opportunities
Reaching patients and caregivers in orphan disease settings has really never been easier or more direct. Many patients are actively online connecting with others and discussing their disease, treatment and lives. Utilizing online tools like Facebook, Twitter and YouTube to engage with your target audience is a start. You’ll likely be able to find who you’re looking for as they are already there, fully engaged.
The challenge is to define an approach to connect with these audiences in a way that advances your marketing objective. Even if your audience is very small, they will still engage in honest dialogue about their condition, and probably about your drug.
Of course, there are many approaches to consider. Pharma companies are starting to work with existing online communities rather than trying to send everyone to unbranded web pages they create. Bloggers are increasingly being treated like reporters. Communications strategies are increasingly transparent and devoid of the marketing gimmicks that online communities reject.
Finally, some are creating unbranded content communities, focussing on disease states, only. This minimizes regulatory restrictions and helps establish corporate visibility in the space. Some are as small as a YouTube video or as large as a virtual community. Online communication enables a brave new world of possibilities for marketers of drugs for orphan diseases.
The Authors
Michael Roth, partner, and Brad Miles, partner, BMC Communications Group
