By Alex Keir, IGHS master’s student
As global health students, we are consistently taught that we must become advocates for health causes and must make abstract theories become real for and important to others. We teach others to see the impacts of disease beyond their immediate scope and we must recognize how pervasive disease can be in peoples’ lives.
While I was a young patient at UCSF Benioff Children’s Hospital Oakland, I witnessed UCSF’s commitment to not simply treating disease, but treating a patient, a family and a culture that disease exists within.
I am a three-time pediatric cancer survivor. By age 14, I had undergone three diagnoses of A.L.L. leukemia, Ewing’s Sarcoma and Spindle Cell Sarcoma. As a “medical miracle” under rare diagnostic conditions, I believe I was privileged to be seen by some of the greatest practitioners, but that sentiment is not reproduced everywhere.
I realized very quickly that cancer makes people uncomfortable. Living in a hospital, missing school, chemotherapy drugs, radiation burns and side effects were my normal, but adjusting to life with a disability after treatment was much more difficult. I had a different perspective on life after hospitalization and it was difficult to re-conform to a normal childhood. I wanted to talk, but I realized that many people did not really want to hear. For my peers, having a classmate with cancer was problematic and difficult to navigate. We are not taught how to talk about a disease that completely disrupts what is considered normal.
Cancer is a disease that is terrifying to so many people, and yet had infiltrated my and my family’s life. It is an incredibly visceral disease because it pervades the body and mind in a way that transforms the way one considers health. In that inability to hide from disease, I realized my own capacity to be seen and heard for what I could share.
Since then, I have had a personal mission to be a voice for cancer that the younger version of me needed; I needed to see that illness was not always going to define me and that my world of disease did not have to take away my desire to live within it. I have worked in advocacy, coordination and research for both pediatric and adult cancers; and yet, I continue to feel that is not enough. I am healthy now, but I feel a responsibility to those who do not get to share their own stories. Going into global health was an important moment not just in translating my own story, but also in attempting to make the lives of others seen and heard.
Cancer is ignored in many global health contexts: it is insurmountable, it is uncomfortable, it is ever-changing, and it exists with complexities that many diseases do not. Yet, cancer-incidence continues to grow, and the steepest increases occur in the least-developed countries. I want those perspectives to matter because the cancer dialogue has largely missed the voices of those who are the most vulnerable. Continued disparities hinder progress in global cancer care.
I came to UCSF’s Master of Science in Global Health program with an interest in improving strategies to enhance patient outcomes and capacity-building in settings that cannot adequately respond to cancer patients. My current capstone research under Drs. Katherine Van Loon and Geoffrey Buckle with the UCSF Global Oncology group focuses on assessing colorectal cancer outcomes in Dar es Salaam, Tanzania. Colorectal cancer is a relatively new disease in East Africa. As the oncological landscape changes globally, so must our institutions and approaches. I believe that health is empowering because I have experienced the alternative; the voice of illness must continue to be seen and heard for change to be made in prevention and treatment.
In the last few decades, both adult and childhood cancer have become diseases that could be tackled where they were previously considered impossible aims. There is a continued need to assess new populations who are at-risk to inform better treatment regimens and improve outcomes. I look forward to the ability to do this in my capstone under the guidance of UCSF faculty, who have played such an important role in my own life. I am incredibly optimistic because I would not be here today without the commitment of clinical practitioners, researchers and institutions who believed that I could. I now hope to instill that belief in others at a time when global oncology is a new and growing field.