For individuals living with blood cancer, stem cell transplantation can offer a potential cure. Over the last decade, survival rates for patients who receive such transplants have been improving. However, for a small group of these patients, an allogenic stem cell transplantation may result in another disease called graft-vs-host disease (GVHD), a potentially fatal complication that can appear after stem cell transplantation.
GVHD, which can be an acute or chronic condition, marks the start of an unexpected journey for these patients and their caregivers. It is with this in mind that Incyte launched the Incyte Ingenuity Award, which funds innovative initiatives to address the unique needs of the US GVHD community.
The inaugural recipient of the Incyte Ingenuity Award is Dr Areej El-Jawahri, on behalf of Massachusetts General Cancer Center (MGCC). Dr El-Jawahri is an oncologist specializing in the care of patients undergoing hematopoietic stem cell transplantation at MGCC, and director of the Bone Marrow Transplant Survivorship Program. Through her time as a practicing oncologist, Dr El-Jawahri has witnessed firsthand the challenging journey that patients often endure after being diagnosed with GVHD. Fueled by her passion for cancer research and care, and an in-depth understanding of GVHD, she saw an opportunity to create meaningful change and to support GVHD patients on a more holistic level through the Incyte Ingenuity Award.
Her winning proposal for the Incyte Ingenuity Award – The Horizon Mobile App – will help Dr El-Jawahri and her team further advocate for chronic GVHD patients and provide support beyond the walls of MGCC through a patient-centered, multicomponent mobile app that comprehensively address the specific needs of these patients. Over time, this app will teach patients the skills to identify and address symptoms and enrich self-management, all while sharing appropriate resources.
Dr El-Jawahri breaks down GVHD, the patient journey and how the Horizon Mobile App seeks to improve the patient and caregiver experience:
What is GVHD and how does it occur?
GVHD is a potentially fatal medical complication that can appear in a patient who has recently received a transplant from another person. It is most commonly triggered by bone marrow transplants, but it can also occur with solid organ transplants as well. The disease occurs when white blood cells that remain in the transplanted tissue begin to identify the host body as a foreign intruder and begin to attack the host’s cells. Many recipients of transplanted tissue have weakened immune systems, which means that their own bodies are often incapable of preventing the attack from beginning.
Symptoms of GVHD depend on the type (acute or chronic) and may include skin rashes, gastrointestinal, liver, and lung damage. Over time, the disease may spread to other areas of the body, such as the immune system, exocrine glands, and connective tissue. There are several treatments available for GVHD, including immunosuppressants, like steroids, and other targeted therapies.
Can you provide an overview of the award-winning Horizon Mobile App project? How does it seek to support the GVHD community?
Through our day-to-day work at MGCC, we recognize the great emotional and physical challenges that chronic GVHD patients face. Many of these patients do not live near a transplant center and therefore struggle to receive support. Also, it’s very hard for oncologists and primary care providers (PCPs) to recognize GVHD symptoms, and unfortunately, it can be even harder to empathize with and fully understand the journey of individuals with GVHD.
We proposed the creation of a patient-centered, multi-component mobile intervention app that addresses the quality of life and care of patients with chronic GVHD. This app, named the Horizon Mobile App, includes an educational game, which will allow a patient character to navigate through a journey as the patient character copes with the condition and monitors progress. The app also aims to provide chronic GVHD patients with strategies for self-management, including understanding when to contact their transplant center for more specialized care.
We also want to make patients aware of all resources that they have at their disposal. Our daily work at MGCC has taught us the importance of patient advocacy and empathetic, emotional support. With this in mind, the app helps connect new patients with the GVHD community to lean on those who truly understand what they are going through. Social support is important because patients are rarely able to return to normal soon after receiving a transplant. Lastly, the app will focus on addressing fatigue and will promote holistic wellbeing through the creation of healthy habits, and a comprehensive self-care plan.
What does receiving the inaugural Incyte Ingenuity Award mean to you and your team?
I speak for all of MGCC when I say that we are immensely proud to be the first recipient of the Incyte Ingenuity Award as our program was created to truly support those living with chronic GVHD. We are also pleased that Incyte recognizes the need to develop a patient-centered approach to caring for people with GVHD, and is helping creative solutions like ours get the support they need to move from an idea into actual execution. When you’re caring for someone with GVHD, you’re tasked with addressing not only their medical needs, but also their emotional needs—which often can be difficult to assess and quantify. We believe the Horizon Mobile App will help us provide more holistic care to our patients moving forward.
I’m grateful my team decided to apply for the Incyte Ingenuity Award, because it motivated us to come together to develop a novel and creative solution that addresses all aspects of GVHD patient care.
To learn more about this award-winning project, please visit https://www.incyteingenuityawards.com/recipients.
Sponsored by Incyte Corporation. MAT-INC-00989 01/21