- The exhibit, Rare Cancer Illuminated: a View from Within, features those impacted by rare and underserved cancers, including patients, family members, advocates and healthcare professionals, with the aim of raising awareness of the unique challenges this community faces
- Rare cancer is defined as fewer than 15 per 100,000 cases per year in the United States
- This exhibit will debut following The Atlantic’s Town Hall, “The Search for Answers: Fighting Rare Cancers,” which Baxalta is underwriting prior to the 2016 American Society of Clinical Oncology annual meeting in Chicago
Baxalta Incorporated, a global biopharmaceutical leader dedicated to delivering transformative therapies to patients with orphan diseases and underserved conditions, today announced the unveiling of an initiative that illustrates the perspectives of those impacted by rare cancers, created in partnership with photographer Rick Guidotti of Positive Exposure. The photo exhibit, Rare Cancer Illuminated: a View From Within, debuts on June 2 in Chicago as part of The Atlantic’s “The Search for Answers: Fighting Rare Cancers,” which Baxalta is underwriting.
People living with rare and underserved cancers often experience difficulty with disease recognition, late or inaccurate diagnosis,1 limited treatment options, and scarcity of clinical trial availability or registries.2 Through photography, Guidotti and Baxalta aim to raise awareness and understanding of the unique challenges that rare cancer communities face and encourage greater collaboration to achieve more efficient diagnoses, treatment, access, and support.
The exhibit gathers individuals connected by various types of rare adult, pediatric, and adolescent cancers, such as pancreatic cancer, myelodysplastic syndromes (MDS), and acute lymphoblastic leukemia (ALL), and aims to illuminate the passion that drives them daily. While there is no international consensus on the definition of rare cancer, it is defined as fewer than 15 per 100,000 cases per year in the U.S.3 In Europe, rare disease is defined as those with a prevalence of fewer than 50 per 100,000 cases.3 Underserved cancers are typically referred to as those receiving inadequate physical or emotional resources.
“At Baxalta, our mission is to improve the lives of individuals affected by rare cancers through the use of innovative technologies and approaches, such as harnessing the body’s immune system,” said David Meek, Executive Vice President and President, Oncology, Baxalta. “Our collaboration with Positive Exposure aims to raise awareness of rare cancers and to unite the community to drive action.”
Guidotti founded the not-for-profit organization, Positive Exposure, in 1998, to celebrate and understand human diversity. Using photography, Guidotti aims to change public perception by helping people to see beyond standard definitions of beauty and arrive at their own interpretation. Rare Cancer Illuminated: a View From Within features photographs by Guidotti of rare cancer community members including those who have been diagnosed with cancer, their family and friends, advocacy organizations, and healthcare professionals. The exhibit will travel to Europe later this year.
“Baxalta’s commitment to serving rare cancer communities aligns with my vision to see beyond disease or diagnosis and celebrate our shared humanity,” said Guidoitti, Founder, Positive Exposure. “We hope that people who experience this exhibit are able to take away a greater sense of understanding and compassion for communities that are up against these challenges, and feel empowered to learn more and become part of the effort to bring solutions.”
The exhibit includes representation from leading advocacy organizations including: American Cancer Society Cancer Action Network; Austrian Childhood Cancer Organization; the Myelodysplastic Syndromes (MDS) Foundation, Inc.; PAN-Austria (Patient Advocacy for Adolescents and Young Adults with Neoplasia); Pancreatic Cancer Action; Stupid Cancer, Inc.; and TEB e.V. Germany (translated to Tumors and Diseases of the Pancreas). Together, their stories focus on the need for improved delivery and access to critical resources and support worldwide.
The Atlantic’s “The Search for Answers: Fighting Rare Cancers,” underwritten by Baxalta, will take place on June 2 from 2:00-5:00 p.m. CDT in Chicago ahead of the American Society of Clinical Oncology (ASCO) annual meeting. The event will focus on topics such as the fight against rare cancer, the role of advocacy organizations, the White House’s Moonshot Initiative, patient access, and support networks. Confirmed speakers include: Richard Schilsky, American Society of Clinical Oncology Chief Medical Officer and co-author of Value Framework; American Cancer Society Deputy Chief Medical Officer J. Leonard Lichtenfeld; and Kim Thiboldeaux, President and Chief Executive Officer of the Cancer Support Community.
This event is open to media; please RSVP directly to The Atlantic's Sydney Simon (email@example.com; 202-266-7338) to attend. A live stream of the afternoon’s conversations will be available beginning at 2:30 p.m. CDT on June 2 on AtlanticLIVE’s website where it will be archived for later viewing.
Baxalta Incorporated is a $6 billion global biopharmaceutical leader developing, manufacturing, and commercializing therapies for orphan diseases and underserved conditions in hematology, oncology, and immunology. Driven by passion to make a meaningful impact on patients’ lives, Baxalta’s broad and diverse pipeline includes biologics with novel mechanisms and advanced technology platforms such as gene therapy. The Baxalta Global Innovation and R&D Center is located in Cambridge, Massachusetts. Launched in 2015 following separation from Baxter International, Baxalta’s heritage in biopharmaceuticals spans decades. Baxalta’s therapies are available in more than 100 countries and it has advanced biological manufacturing operations across 12 facilities, including state-of-the-art recombinant production and plasma fractionation. Headquartered in Northern Illinois, Baxalta employs 16,000 employees worldwide.
About Positive Exposure
Positive Exposure, an innovative arts, education, and advocacy organization working with individuals living with genetic difference, was founded by the award-winning photographer, Rick Guidotti. Positive Exposure utilizes the visual arts to significantly impact the fields of genetics, mental health, and human rights, by exploring the social and psychological experiences of people living with genetic conditions of all ages and ethno-cultural heritages. This impressive and powerful collection of imagery, film, and narratives celebrates the richness and beauty of human diversity and dignity. Positive Exposure provides new opportunities to see individuals living with a difference, first and foremost, as human beings, rather than as a specific diagnosis or disease. Positive Exposure’s premiere exhibit debuted in June 2001 at the People’s Genome Celebration at the Smithsonian National Museum of Natural History, and continues to exhibit in galleries, museums, and public arenas internationally.
1 Gatta G, Ciccolallo L, Capocaccia R, et al. Survival from rare cancer in adults: a population-based study. The Lancet 2006;7(20): 132-140. Retrieved from: http://www.ncbi.nlm.nih.gov/pubmed/16455477?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum. Accessed on May 12, 2016.
2 Rare Cancers Europe Website. The Burden and the Challenges of Rare Cancers. Retrieved from: http://www.rarecancerseurope.org/About-Rare-Cancers/The-Burden-and-the-Challenges-of-Rare-Cancers. Accessed on May 12, 2016
3 International Rare Cancers Initiative. The Lancet 2013;14;109-110. Retrieved from: http://www.eortc.org/irci/wp-content/uploads/2015/09/oncology.pdf. Accessed on May 12, 2016.
Attend AtlanticLIVE's "The Search for Answers"
Baxalta’s oncology division has partnered with Rick Guidotti of Positive Exposure to present Rare Cancer Illuminated: a View from Within, an exhibit about rare and underserved cancer communities. Through photography, the initiative aims to raise awareness and understanding of the unique challenges that underserved and rare cancer communities face, and encourage greater collaboration to achieve more efficient diagnoses, treatment, access, and support.
Ali Stunt, United Kingdom, Pancreatic Cancer Action. Pancreatic Cancer Action was founded by Stunt, who was diagnosed with the disease in 2010. Stunt is the chief executive officer of the organization, “There is greater awareness for pancreatic cancer, but survival has not improved. We need to be diagnosed earlier and in time for potentially curative surgery, and have equal and better access to care.”
Ellen Hooper, United States, Pediatric Hematologist/Oncologist. Hooper works in clinical development of oncology therapies for unmet medical needs, “I am driven by the patients and the families who I’ve treated all along the way. I want them to have options and a chance at living a full and prosperous life.”
Natalija Frank, MPH, Austria, PAN-Austria, (Patient Advocacy for Adolescents and young Adults with Neoplasia). PAN-Austria works to support adolescents and young adults with neoplasia. Frank, who lost her father to cancer at age 17, is also executive manager for clinical research and coordinating manager for patient and care affairs at the Comprehensive Cancer Center in Vienna, Austria, “I am very aware that cancer instills a sense of fear that no one wants to be confronted with, which can make the work of patient advocates difficult. We won’t stop raising awareness until people in countries around the world can access state-of-the-art treatment and necessary support.”
The Dover Brothers, United States, Ezra, Noah, Judah, and Josiah, an Acute Lymphoblastic Leukemia (ALL) Survivor. According to their parents, “Rare cancer can be an isolating experience because many do not know anyone else who has walked the same path, and therefore don’t understand the challenges they face. We’d like our story to offer hope for families who find themselves on that same path.”
Taylor Babcock, United States, Acute Lymphoblastic Leukemia (ALL) Survivor and Advocate. Babcock was diagnosed with ALL at age four, “You either let cancer hold you down and stand on top of you, or you use it as a platform to bring you up. Other kids living with cancer – they’re my drive for wanting to make my experience with cancer positive instead of letting it drag me down.”