Rare disease agency shoots film to spotlight the 'Rare in Common' patient path

Daine Johnson Rare in Common film
Daine Johnson, 6, has the rare bone disorder osteogenesis imperfecta. He receives infusions every six weeks to stop the rapid progression of his disease.

Rare diseases are by definition uncommon. The people in the community surrounding rare diseases--patients, caregivers, healthcare providers and pharma--actually have much in common. And that uniquely shared path is what Cambridge BioMarketing, a pharma ad agency that specializes in orphan drug marketing, wanted to illustrate with its new documentary “Rare in Common.”  

The movie is currently under review for several film festivals, said the director Alisa Shakarian, who is also the creative director at Cambridge. Meanwhile, the movie has been screened privately and will be again this week in New York, with multiple clips of the patients and families in the film also available online.

Creating a movie is an unusual move for an ad agency, and in this case, Cambridge meant to hit multiple targets, Shakarian said. For patients with rare diseases, the movie is meant to empower them--to help them connect with one another and become advocates. For pharma companies developing orphan drugs, the movie details patients’ individual paths to diagnosis, which fits into one of Cambridge's key functions, Shakarian said: showing pharmas how to find patients and educate physicians.

And then for the general public, the film is meant to shine a light onto the common struggle of the 30 million Americans, broken into patient populations of 200,000 or fewer, who have rare diseases.

“The healthcare system is not built for rare cases. It’s built for the common person, and that makes it incredibly hard to maneuver for those with rare diseases,” Shakarian said.

While Cambridge created and paid for the film itself, some of its clients have been speaking out about the movie since it was launched in April; Intercept Pharmaceuticals ($ICPT) gave its perspective at SXSW Interactive Festival when Cambridge presented a panel discussion about rare diseases.

“Traditional product marketing is often preceded by, or is secondary to, addressing the needs the patient community which includes raising disease awareness, supporting new or ongoing advocacy efforts, and providing relevant medical education to the specialized provider community,” said Daniel Yip, Intercept’s head of U.S. marketing, in an email interview with FiercePharmaMarketing. He noted that Intercept does not yet have a marketed drug, and he spoke from past personal experience working in rare diseases.

Shakarian said digital in particular is a much more important media for communicating in and with rare disease communities. Accurate and sophisticated digital content is necessary to convey the depth of specialized information those patients need, she said.

Advocacy groups are also important in rare disease drug development and marketing. For one high-profile example, consider the Cystic Fibrosis Foundation's financial support for the research and clinical trials on Vertex Pharmaceuticals' ($VRTX) CF meds Kalydeco and Orkambi. The foundation put at least $150 million behind the R&D and since has sold those drug royalties for $3 billion to help fund more research.

Yip said advocacy groups--from individual grassroots to well-organized non-profits--are often involved in early stages of the drug’s life as part of their role “advocating for research and raising disease awareness in collaboration with pharma companies.”

- watch movie clips

Pictured is Daine Johnson, 6, who has the rare bone disorder osteogenesis imperfecta and is one of the patients features in the Rare in Common film. He receives infusions every six weeks to stop the rapid progression of his disease.