Harnessing the power of film in a rare disease awareness campaign

Jennifer Wound of Genzyme illustrates the power of using film in rare disease awareness campaigns by discussing Genzyme’s ‘Facing Fabry Together’ patient video.

Disease awareness campaigns continue to play a pivotal role in healthcare. Efforts to educate the public about disease risk, symptoms and treatment often help patients and care providers to recognize risk factors and seek appropriate medical attention. In the earliest days of healthcare marketing, a disease awareness campaign generally involved development of printed materials, including educational brochures and advertorials. This was also the era when many disease observations were introduced, such as World Diabetes Day or National Breast Cancer Awareness Month. More recently, the growth of online news sites and blogs has provided many effective new platforms for disease awareness programs. Some marketers have even recently begun exploring the use of high-quality documentary-style video programs to capture and share authentic experiences of patients living with many diseases.

“…orphan drugs will represent 15.9 percent of worldwide prescription sales by 2018, up from 5.1 percent in 1998.”

While disease awareness campaigns are common components of marketing in many therapeutic areas, they can play an especially important role in efforts to expand awareness of rare diseases. In many cases, the symptoms and treatment options for rare diseases are unknown to many clinicians and the general public, including people who may be at risk. As a result, many patients go undiagnosed for years. Awareness campaigns can help both patients and clinicians become familiar with many rare diseases, and they can also help to create a strong community to support patient advocacy and research.

Highlighting the patient experience in orphan diseases

According to a recent report from health care consultancy Evaluate Pharma, orphan drugs will represent 15.9 percent of worldwide prescription sales by 2018, up from 5.1 percent in 1998. As more products are developed to treat people with rare diseases, efforts to expand awareness of disease risk and treatment become increasingly important. Within this environment recent experience has shown that a documentary-style video that presents real-world perspectives from patients, care partners and clinicians can be a powerful tool in building awareness that can now be distributed and presented in multiple platforms that can reach large audiences.

As a senior product manager at a biotechnology company that specializes in the treatment of rare diseases, I have seen firsthand that efforts to reach and engage patients with information can be a complex challenge. One strategy that is often positioned to work well is to develop new opportunities for people to hear perspectives directly from other patients and from treatment specialists. To achieve this goal on a global scale, earlier this year Genzyme supported the development of Facing Fabry Together, a 45-minute video documentary that chronicles the lives and experiences of four families from around the world living with a rare genetic disorder called Fabry disease. This inherited and progressive disease affects only about 5,000 to 7,000 people worldwide. In the earlier stages, symptoms can include episodes of intense burning pain, intolerance to heat or cold, and gastrointestinal problems. Over time many patients go on to experience serious complications, including kidney failure, heart attack and stroke.

Our goal in producing this video was to present perspectives that could help audiences around the world better understand Fabry disease. We also wanted to use this dynamic medium and resource to build a deeper connection with the global community of people living with Fabry and their care partners. In the film, patients share personal insights about the daily challenges they face, their journey to diagnosis and their hopes for the future. We wanted to highlight that despite geographic borders, there are common experiences shared by those affected by Fabry disease. For this reason, families from Canada, Brazil, France, and Germany shared their stories in the documentary.

Telling an authentic and memorable story

Documentary-style storytelling requires subjects to be comfortable with sharing their personal stories, which can be difficult to achieve when participants face many physical and emotional challenges. The content must be informative, visually-compelling and, most importantly, authentic. In creating Facing Fabry Together, we enlisted the help of a director and production team with experience working on films about sensitive health issues with patients and care partners. They took many steps to connect with all of the participants in Facing Fabry Together and established a strong relationship of trust before filming began.

“Our goal in producing this video was to present perspectives that could help audiences around the world better understand Fabry disease.”

Another reality in developing a film such as this is the fact that you will need many hours of footage to be able to produce a cohesive and powerful final film. It is essential to encourage participants to speak at length about their experiences in order to provide enough footage to tell the “whole” story of a disease from multiple perspectives. Once again, a production team that is familiar with the special challenges in working with patients will be better equipped to do the research and shape the discussion that delivers the footage you need.

Finding the audience

Creating a film that speaks to such a small community doesn’t end when the camera stops rolling. Along with careful editing, the film must be supported by a comprehensive promotional and distribution strategy. In the early years of film production sponsored by industry, the only options were to arrange public “showings” or prepare and distribute copies of the film in the most widely available format (reel-to-reel, VHS, DVD, etc.). Today the options to distribute a film to audiences around the world are more varied and more broadly accessible. Digital versions of video programming can be distributed via email and posted to social networking sites with video sharing capabilities, such as Facebook, YouTube and Vimeo. For Facing Fabry Together, we developed a multi-channel approach to promote and distribute the film that included development of a Facing Fabry Together microsite, which serves as the primary vehicle for sharing the video throughout the world. The site allows visitors to view the 45-minute documentary in full or in chapters. The microsite also provides context by featuring additional information on the families featured in the film and the making of the film.

We also worked to promote access to the film via YouTube, where it is readily available in full or in short clips for added viewing convenience. There are also links to direct viewers back to the microsite. PR was also used to promote the film and to drive people to sites where they could view it. The Internet distribution strategy had to take into account viewership on different mobile devices and differences in bandwidth speeds in countries around the world. For those that could not support broad internet access or preferred watching the film on a TV, we developed a DVD version of Facing Fabry Together that is available to order from the microsite.

An important aspect of the distribution of Facing Fabry Together was outreach to patient organizations, including those focused on Fabry disease and other rare diseases. We collaborated with our patient advocacy team to share the film with various patient organizations around the world. As a result, the film has been shared through these patient organizations’ websites, blogs, and social media.

Internet search technology along with the variety of distribution channels available today presents an opportunity for more pharma and biotech companies to incorporate documentaries into disease awareness campaigns. Documentaries have the potential to bring information to a wide global audience while utilizing the tremendous impact of patient-to-patient communication. Presenting stories of real people living with any disease, and especially rare diseases, can help companies demonstrate their support for these communities.


About the author:

Jennifer Wound is a senior product manager for global marketing at Genzyme Corporation, a subsidiary of Sanofi. She recently helped to develop “Facing Fabry Together,” a rare disease documentary released in February 2013. To view the film, please visit www.facingfabrytogether.com.

What patient documentaries do you think are effective?