When it comes to the calendar of months dedicated to raising awareness of illnesses or medical conditions, a few may come to mind. October is for raising awareness of breast cancer, May is for mental health and November is for prostate cancer.
It stands to reason that September’s focus on desmoid tumors may not roll off the tongue.
Despite not being as much of a household name as those other conditions, SpringWorks Therapeutics is making a concerted effort to boost the profile of this rare disease with the launch of desmoidtumors.com.
Additionally, the pharma company is introducing an accompanying campaign coinciding with Desmoid Tumors Awareness Month.
Both efforts are intended to augment the work of partner organizations like the Desmoid Tumor Research Foundation.
Like many rare diseases, desmoid tumors (an excessive proliferation of fibroblast cells) are often misdiagnosed, largely due to a lack of awareness and familiarity of the condition.
An estimated 1,500 Americans each year are diagnosed with desmoid tumors, totaling around five to six individuals per million.
According to Bhavesh Ashar, chief commercial officer for SpringWorks, it can take up to eight months for patients to get an accurate diagnosis for desmoid tumors. Most new diagnoses are among people aged 20 to 44, while women are two to three times more likely to be diagnosed with desmoid tumors compared to men.
SpringWorks ensured that the demographic differences are reflected in the website’s imagery, which features young women in active behavior with kids or dogs.
Some other imagery is more surprising, however, like the repeated motif of plant-like branches that appear on various elements of the website and are designed to evoke the tendril growths of desmoid tumors.
“It created an emotional connection that brings to life the sort of gripping hold that these tumors can have and their invasive nature,” Ashar says. “While the tumor is considered benign in the sense that it doesn’t metastasize, it does infiltrate the body and has a significant impact on patients’ lives.”
Beyond its surface appearance, Ashar explains that the site also reflects the concerns of the community of patients living with desmoid tumors.
“When we first started thinking about this educational campaign, we had some baseline information, but we wanted deeper patient and physician insights,” he says. “These pointed to significant challenges. Patients often speak of despair because they found this disease had no resolution because the tumors kept coming back. They also have not felt seen or heard sometimes because, with a rare disease, finding a doctor that understands desmoid tumors is difficult.”
The new website encourages open conversations between doctors and patients. SpringWorks sees this approach as one that emphasizes the educational process around desmoid tumors and involves both sides. The tone is central to the effectiveness of the site with both patient and HCP versions.
“Many physicians don’t see these patients regularly, so having the information about desmoid tumors readily available in one spot when they need it has been helpful for them,” Ashar says. “We developed this campaign to be direct and realistic in tone. So far, based on the feedback we have received, it has resonated well with both stakeholders.”
Moving forward, Ashar describes the website as an evolving and growing platform that he hopes will also lead patients and physicians to resources from other organizations and advocacy groups.
“People with desmoid tumors do not need to feel alone,” Ashar says. “There is help and support available. SpringWorks is committed to improving our understanding of desmoid tumors. There’s a significant need for more education and we are working with urgency and tenacity to help improve the outcomes for these patients.”