SpringWorks Therapeutics is launching a new disease state education campaign at DesmoidTumors.com.
The clinical-stage biotech, which is working on medicines to help patients suffering from rare diseases and cancers including desmoid tumors, hopes to improve awareness of the often misunderstood and misdiagnosed disease.
SpringWorks developed the campaign after conducting market research involving patients, caregivers and healthcare providers (HCPs), basing it on their reactions and perceptions of the desmoid tumor disease.
This comes as the biotech is gearing up for a potential approval for its late stage desmoid tumor asset, nirogacestat, which earlier this year hit its primary and secondary endpoints in a key phase 3, with the company seeking an FDA review for the drug.
Desmoid tumors, though benign, are locally aggressive with tendril-like growths that can attach to and wrap around surrounding tissues causing pain, limited range of motion and even impaired mobility. In rare instances, desmoid tumors can be life-threatening. About 30% to 40% of desmoid tumors are initially misdiagnosed, and it can take up to eight months for a patient to get a correct diagnosis.
Therefore, the team at SpringWorks landed on a campaign to raise awareness by highlighting the patient experience with comprehensive resources for patients and physicians. Ultimately, the campaign drives others to rethink this underserved population of patients and the gravity of this ongoing disease from its initial diagnosis throughout the patient’s journey.
The biotech’s new website targets doctors and patients with resources including patient stories, a treatment guide, a doctor discussion guide and more.
According to Bhavesh Ashar, chief commercial officer for SpringWorks, surgery was the default treatment option for many years for patients living with desmoid tumors. However, many patients in the market research showed regret for the decision to undergo surgery, as it often does not stop the tumor from regrowth.
“Tumor regrowth and recurrence from surgery can be as high as 77% depending on the nature and location of the tumor,” Ashar told Fierce Pharma Marketing in an interview.
Ashar said there is a lack of information about these rare tumors, so SpringWorks is targeting the public via the website, social media, search engine optimization and physician websites. In addition, the marketing group is looking for more ways to reach a female demographic between the ages of 20 and 44, as women are two to three times more likely to be diagnosed with desmoid tumors than men are.
“At the end of the day, it has to be about getting out the right and most current information to patients and physicians and connecting the knowledge gap across stakeholders—while putting the disease into context with helpful resources for patients and HCPs,” Ashar said.
Before coming up with the campaign, SpringWorks did imagery testing and found that the concept of the tendril-like growth was the one that resonated best with patients. Although the tumor does not usually end in mortality for the patient, it is life-altering in that it often causes debilitating pain—taking a toll on the patient physically and mentally.
Even just two days after the website launch in September, SpringWorks said it started receiving positive feedback from those using DesmoidTumors.com. In fact, one response indicated that the person finally had a clear understanding of what her friend with the disease was going through.