As treatment for spinal muscular atrophy (SMA) has drastically improved over the last decade, so too have survival rates and the number of people with SMA living well into adulthood.
In line with that movement, a new education and awareness campaign from Novartis shifts focus from the younger audiences that are typically the targets of such resources to the older teenagers and young adults who are going to college, starting careers and living independently while also managing the neuromuscular disorder.
“These are stories that, frankly, didn’t exist years ago, when it was not possible to treat SMA,” Tracey Dawson, Ph.D., senior VP and head of Novartis’ U.S. neuroscience therapeutic area, said in an interview with Fierce Pharma Marketing.
The campaign, then, “is a key recognition of how the life cycle of SMA has changed and therefore how the population has changed. And therefore the type of support that we want to provide—which needs to cover all aspects of the lives that they live—is really important,” she continued.
The “SMAshing My Limits” initiative is focused on encouraging people with the genetic disease to celebrate every possible win and was developed based on feedback from members of the SMA community. According to Dawson, those conversations showed that seemingly small achievements that can have major impacts for people with SMA are often overlooked.
“Many of the people that are living with SMA, much of how they live their lives goes unnoticed and unrecognized,” she said. “And when you think about some of the struggles that they face in terms of living independent lives, our view—and based on the insights that they gave us—was it’s very much time for those to be celebrated more.”
That conclusion led to “the cool, cheeky little title of ‘SMAshing My Limits,’” she continued, “to really have that celebratory feel of the achievements that they get through, all of those small milestones that to them are really important in retaining their independence and living a more normal life.”
The campaign centers on a digital resource hub that includes information about living with and managing SMA, patient stories, community support resources and downloadable guides. The latter group includes a guide for explaining SMA to people who aren’t familiar, prompts to help people with SMA celebrate every milestone they achieve and tips for navigating the move from childhood to adulthood, the last of which “causes a lot of frustration and anxiety for people living with SMA,” per Dawson.
The site is unbranded, save for the inclusion of the Novartis logo at the very bottom, and links to information about treatment lead to webpages from organizations like Cure SMA and the Muscular Dystrophy Association, with no direct mention of Novartis’ own Zolgensma gene therapy—which has, for its part, recently shown promise in patients up to 18 years old, compared to its currently approved population of those 2 and younger.
An accompanying digital and social media push will encourage viewers to visit the online “SMAshing My Limits” hub.
Both the campaign and its media presence will expand in the coming months, and particularly amid August’s SMA Awareness Month, according to the exec.
As the campaign continues, Novartis plans to monitor the usual engagement metrics—which Dawson suggested may be especially telling, thanks to the alignment of a primarily digital campaign targeting a primarily digital audience.
The company will also stay in close contact with the SMA community to gauge their reactions to the initiative and its resources, she said, in line with Novartis’ overarching goal of providing “holistic support” to all patient disease areas that it serves.
That goal “goes beyond the therapeutic,” she said, and includes Novartis’ patient services and market access models, for example.
“This also goes into supporting patients, supporting people living with the disease who are curious about what more they can learn, what more they could aspire to do,” she continued. “And so community engagement campaigns like this are really critical to support them and continue to help them grow as they grow.”