The global biopharmaceutical company Incyte recently announced the first-ever recipient of its Incyte Ingenuity Award, which will be the Massachusetts General Cancer Center (MGCC). The purpose of this award is to support people living with graft-versus-host disease (GvHD), a rare complication that affects recipients of stem cell transplants, by encouraging innovative and novel solutions that address specific challenges facing the GvHD community. Patient Worthy spoke with Dr. Areej El-Jawahri, who directs the Bone Marrow Transplant Survivorship Program at MGCC, to discuss her award-winning project, titled Horizon Mobile App for Patients with Chronic GvHD.
About Graft-versus-Host Disease
GvHD is a potentially fatal medical complication that can appear in a patient that has recently received a transplant operation 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 body is often incapable of preventing the attack from beginning. Symptoms of GvHD disease include skin rashes, gastrointestinal and liver damage, and damage to the mucosa. Long term disease may see the attack spread to other areas as well, such as the host immune system, the exocrine glands, lungs, and connective tissue. Treatment often includes immunosuppressants such as steroids and certain chemotherapy agents. To learn more about GvHD, click here.
Q: What is your role at the Massachusetts General Cancer Center?
Dr. El-Jawahri: I’m a transplant oncologist at the hospital, and I specifically run the Bone Marrow Transplant Survivorship Program at Mass General. I also direct all of our support and survivorship care research in blood cancers at the MGCC.
Q: How has bone marrow transplant helped improve outcomes for cancer patients in recent years?
Dr. El-Jawahri: Bone marrow transplant is primarily used to treat blood cancers or benign hematological conditions. The goal of a transplant operation is to provide a potential cure. Over the last decade, survival rates for patients that get a transplant have been improving. However, there is a possibility of complications and side effects from the procedure. One of the biggest challenges for survivors has been chronic GvHD. It develops from the immune system from the donor attacking the body of the patient and can result in a lot of quality of life detriments. Because of recent advancements in managing chronic GvHD, we have been able to do better in helping these patients, and that was the focus of the Incyte Ingenuity Award. I’m really grateful that Incyte is recognizing to address the quality of life and emotional burden of the illness.
Q: What does it mean for MGCC to receive the Incyte Ingenuity Award?
Dr. El-Jawahri: I think I speak for all of MGCC when I say that we are immensely proud to be the first recipient of this award. It means a lot to us because our program was really created primarily to support people living with chronic GvHD. We are also glad that Incyte has recognized the need to develop a patient-centered approach.
Q: How does the Horizon Mobile App help improve the lives of patients with chronic GvHD?
Dr. El Jawahri: We recognize the great emotional and physical challenges that GvHD patients face. One factor is that many of these patients do not live near their transplant center. Unfortunately, many oncologists and Primary Care Providers (PCPs) may not recognize their symptoms. So the app is meant to help patients recognize symptoms and determine if they could be caused by GvHD. The second goal is to provide patients with strategies for self-management, including understanding when to contact their transplant center for more specialized treatments. We also want to help patients ‘advocate’ all of the resources that they have at their disposal, such as by getting involved in the GvHD community. Social support is important because patients are rarely able to return to normal soon after a transplant. The app is also focused on developing skills-based coping strategies that will facilitate living with the illness and uncertainty that comes with it.
Q: What are some other challenges that long-term survivors of bone marrow transplant face outside of GvHD?
Dr. El Jawahri: Well patients can definitely feel a lot of fatigue following the operation, as well as functional limitations as a result of corticosteroid therapy or other treatments. Sexual health can also be affected, and emotional problems such as fear of recurrence are common, as are anxiety and depression. The app is also well suited for patients dealing with these other problems outside of GvHD.
Q: What makes some patients suitable for transplant and others not?
Dr. El-Jawahri: There are a lot of factors that can impact eligibility for a transplant. A transplant is a serious procedure and many cases of blood cancer can be treated in other ways. So we have to get an idea of whether the transplant is needed in the first place. We also have to consider if a patient is able to tolerate a transplant. Patients with pre-existing conditions or health problems may not be good candidates. Finding a suitable donor is also a hurdle for patients that are being considered for transplant. Donors are always in high demand and this has only increased during the COVID-19 pandemic.
The Incyte Ingenuity Award will be an annual program that will continue to support the GvHD community.
Click here to learn more about it.