High-profile Huntington's disease film scores on social media, but where was pharma?

HBO premiered an award-winning short documentary about Huntington's disease, a rare, hereditary neurological malady, on Monday night. The film follows actress and filmmaker Marianne Palka as she finds out the results of her genetic test. If someone has a parent with the disease as she did, they have a 50/50 chance of getting the disease.

On social media before and after the show aired, Palka's friends and family, Huntington's advocates and the creative community celebrated her bravery--fewer than one in five people at risk get tested--and asked for awareness or donations for research. The leading foundation Huntington's disease Society of America, founded by the wife of singer Woody Guthrie who died from the disease, and the University of Iowa HD Center, an academic and clinical research center, also tweeted messages of support and calls for action.

The missing voice? Pharma. While there are no treatments to stop or reverse the disease, there are drugs that treat its symptoms, such as depression, anxiety, obsessive-compulsive behaviors and chorea involuntary movements. To date only Lundbeck's Xenaxine is approved to treat Huntington's chorea, but Teva's ($TEVA) recently acquired Auspex has a highly anticipated drug in Phase III.

Other drugs used in HD treatment include antipsychotics such as Johnson & Johnson's ($JNJ) Haldol, Eli Lilly's ($LLY) Zyprexa and Otsuka's Abilify. At a recent HD therapeutics conference, pharmas including Vertex ($VRTX), Sanofi's ($SNY) Genzyme and Sangamo Bioscience spoke about their work to advance "Huntington's silencing," which involves reducing the creation of mutant protein in cells.

Lundbeck, which is the top sponsor of the annual HDSA convention later this month in Dallas, did post one tweet and one retweet from HDSA about the film. Auspex posted one message on its Facebook page asking people to watch the movie; it does not have a Twitter account.

InTouch Solutions senior director of social media Doug Weinbrenner

Still, it adds up to missed opportunity, said Doug Weinbrenner, senior director of social media at InTouch Solutions.

"If we know about a TV show or film, we would encourage our clients to take advantage of the attention," he said. "And if we didn't know beforehand, it is still something to catch the tailwind after. … Rare diseases tend not to have robust budgets, so any tailwind they can take from Hollywood is a win."

He recalled working with a rare disease drug client when the disease appeared on an episode of the TV medical drama "House." While the marketing was still in a social listening phase, the airing of the show "pulled back the curtain on a larger audience identifying with the disease than we had previously monitored and collected insights and analytics from. There was definitely a spike for about 36-48 hours."

When engaging in social media opportunities like this, Weinbrenner recommended keeping an educational focus, noting that just getting the attention of the mainstream media for a rare disease is an advantage. While he acknowledged that pivoting quickly to capture mass media moments can be difficult for pharma, it is possible, especially considering the next-day tailwind as he calls it. In the case of a film launch, social media can be prepped in advance.

"You just have to make sure to do it in a way that is informative and not opportunistic," he said.

Special Report: Top 10 pharma companies in social media | Top 20 orphan drugs by 2018