“A picture is worth a thousand words,” as the saying goes, and that means the images at the heart of Blueprint Medicines’ Colors of SM campaign have a lot to say.
Created in collaboration with the nonprofit support group Twist Out Cancer, Colors of SM tells the complex and powerful stories of six patients living with systemic mastocytosis (SM).
This rare disorder causes an excess of mast cells, a type of white blood cell, that accumulate in patients’ skin, bone marrow, digestive tract and other organs. It is estimated that SM affects one in 10,000 to 20,000 people worldwide.
For Blueprint Medicines, which has focused on developing treatments for SM since its founding in 2011, this campaign was an opportunity to raise awareness and empower patients to tell their stories by collaborating with visual artists.
Twist Out Cancer has over a decade of experience using arts programs to provide psychosocial support to cancer patients.
To kick off the multi-year campaign, six patients were paired with six artists. The artwork that emerged from their conversations was unveiled in Indianapolis earlier this summer and will now be displayed at upcoming medical conferences and shared via social media.
Fatima Scipione, vice president of global patient affairs at Blueprint Medicines, has long been familiar with the partner organization and its work, including the story of its founder, Jenna Benn Shersher, a cancer survivor.
When Scipione joined Blueprint Medicines in her patient affairs role, she seized the opportunity to merge the two organizations and create Colors of SM.
She points out that SM patients often feel overlooked and unheard throughout the diagnosis process.
“This leads to a certain level of frustration and isolation and highlights the urgent need to find a way to make these people visible and heard,” she says. “Art could be a powerful medium to tell their stories and provide support and empowerment to the community. The name Colors of SM reflects the diverse experiences of people living with SM.”
For Scipione, art has a power that words alone cannot. He adds that he hopes the program can generate a sense of compassion and empathy.
“For example, we go to the beach to enjoy the sun and the sea. However, this is not something a SM patient can do if the sun is a trigger,” she explains. “Eating out or going to a family dinner is something we take for granted, but due to the unpredictable nature of the disease, this is not possible for them. We wanted to create a program that tells their stories and hopefully inspires empathy and compassion for these circumstances.”
Following the unveiling of the artwork at the Mast Cell Disease Society’s TMS MastCellCon last month in Indianapolis, Blueprint Medicines plans to exhibit the artwork at the American College of Allergy, Asthma and Immunology’s annual scientific meeting in Boston in late October, as well as at regional medical conferences.
“We’re trying to think about where we can use the art and where it can tell a story,” adds Scipione. “The primary audience, if you will, is healthcare professionals (HCPs) – that was the original intention of the program. But we’re also thinking about the broader application.”
Blueprint Medicines is launching Colors of SM as a multi-year program and is accepting applications for the next group of people who want to share their SM stories.
In the second year, nurses are encouraged to apply for one of the 20 available spots. Registration is expected to close on October 20, which is in the middle of Mast Cell Disease Awareness Month.
Scipione’s goal with the program is not only to help people visualize their experiences, but also to encourage more conversations and greater awareness.
“I hope the program will enable patients to have meaningful and informed conversations with their families, friends and doctors so that we can reduce the uncertainty and fear that comes with diagnosis,” she says. “I hope it will help patients get answers to their questions more quickly and ultimately improve their quality of life. If this art can do that, that would be great.”