Advocate to Patient – Vivian’s Journey with Acute Myeloid Leukemia Vivian Larsen July 16, 2024

From Advocate to Patient: A New Perspective on Health Equity

A New Year's Resolution and Unexpected Diagnosis

At the beginning of 2024, I made a resolution to focus on my health. For months, I had been watching my diet, losing weight, and becoming healthier. During a routine blood test in January, my doctor told me I had severe anemia with extremely low blood cell counts. I had no noticeable symptoms — just feeling tired a lot. I didn’t think anything of it since it was typical for working mothers with young toddlers to feel tired. I never imagined I would be fighting cancer.

Life-Altering News: The Urgency of an AML Diagnosis

When a bone marrow biopsy confirmed that I had Acute Myeloid Leukemia (AML), my world turned upside down. We canceled a planned trip to Taiwan for my relatives to meet my son for the first time, called off a cruise vacation to the Caribbean, and started estate planning frantically. We were essentially planning for a life possibly without me in it, all while dealing with the shock and urgency of my diagnosis. Time became a precious commodity, as my doctor conveyed the urgency of treating this ticking time bomb in my body. My coping mechanism was to learn as much as I could about leukemia and seeking second and third opinions on my diagnosis.

Join the Stem Cell Registry

Life-Altering News: The Urgency of an AML Diagnosis

When a bone marrow biopsy confirmed that I had Acute Myeloid Leukemia (AML), my world turned upside down. We canceled a planned trip to Taiwan for my relatives to meet my son for the first time, called off a cruise vacation to the Caribbean, and started estate planning frantically. We were essentially planning for a life possibly without me in it, all while dealing with the shock and urgency of my diagnosis. Time became a precious commodity, as my doctor conveyed the urgency of treating this ticking time bomb in my body. My coping mechanism was to learn as much as I could about leukemia and seeking second and third opinions on my diagnosis.

Cultural and Generational Challenges

Navigating cultural and generational considerations added another layer of complexity to my journey with cancer. Initially, my parents didn’t want anyone outside the immediate family to know about my diagnosis—a sentiment likely shared by many in our culture. Through several conversations, I convinced them that it was okay to share my situation because I needed all the support I could get. Even then, there was some resistance; my father questioned why I wanted the world to know I was sick.

The Irony of Fate

For many years of my professional career, I’ve had the pleasure of bringing the patient and scientific communities closer together to deliver more valuable medicines to those in need, especially in underserved communities. My team and I at Legacy Health Strategies focus on elevating the voice of patients and advancing health equity. Now, in an unexpected twist of fate, I’ve been thrust into being a part of a patient community that needs help overcoming health inequities.

Unveiling Health Inequities

My month-long hospital stay for the first round of chemo unveiled for me the health inequities faced by people living with blood cancer. My doctors told me if the leukemia comes back at any point in the next two years, I will need a blood stem cell transplant to save my life. It’s a scary feeling to lie in a hospital bed, praying for a stem cell donor, knowing that I’m less likely to find a match because there aren’t enough Asians in the bone marrow registry. This reality has compelled me to make a difference for others in similar situations. I’m inspired to get the word out so people of color to have a fighting chance. This work ahead of me is not just about my own survival – it is also about saving the lives of others.

Unveiling Health Inequities

My month-long hospital stay for the first round of chemo unveiled for me the health inequities faced by people living with blood cancer. My doctors told me if the leukemia comes back at any point in the next two years, I will need a blood stem cell transplant to save my life. It’s a scary feeling to lie in a hospital bed, praying for a stem cell donor, knowing that I’m less likely to find a match because there aren’t enough Asians in the bone marrow registry. This reality has compelled me to make a difference for others in similar situations. I’m inspired to get the word out so people of color to have a fighting chance. This work ahead of me is not just about my own survival – it is also about saving the lives of others.

Spreading Awareness

My personal experience so far has helped speak from the heart about the change I wish to see. I’m also grateful for the media outlets and the patient organizations who have helped me spread awareness because I can’t do this on my own. I need your help to get the word out – together we can make a much bigger difference.

Moving Forward with Purpose: You can Make a Difference

My journey with AML has been a profound and transformative experience. It has highlighted the urgent need to address health disparities and to ensure equitable care for patients. YOU can make a difference. Together, we can make this a fairer fight for people of all backgrounds.
If you are between the ages of 18 and 40, please consider joining the stem cell registry. The process is simple and potentially lifesaving. Visit NMDP.org or text TeamVivianPA to 61474 to find out the steps. It involves a quick cheek swab, and you could be the match that saves a life.
Join the Stem Cell Registry