When Professor Alexes Harris learned she had a rare form of leukemia, she knew she was in a fight for her life. But she didn't realize how difficult it would be to find a bone marrow match as a woman of color. This is her story.
I have a rare blood cancer called myelodysplastic syndrome.
I was diagnosed in May 2016 after a year of various tests. Prior to being diagnosed, my only health complaints were a random onset of what felt like asthma attacks during my cycling classes (the only reason I went to the doctor), feeling very tired, and not always thinking clearly. I was told that if I did not begin treatment right away I would have two years to live.
I’m a 41-year-old mother of a 9 year old and 5 year old (and wife to an amazing husband), so my only true option was to begin treatment.
After being presented with treatment options, we opted for an intensive round of in-patient chemotherapy, which I underwent in June 2016 and managed symptoms in July, 2016. During my initial diagnosis I learned that I would eventually need a bone marrow or stem cell transplant. This would be my only hope of a cure.
We immediately started research to learn about how matches were found and I discovered that because I am a person with a mixed race and ethnic background (African American, Filipino and white) I would have a difficult time finding a full donor match.
While whites have a 75 percent chance of finding a full match in the existing bone marrow registry, African Americans only have a 19 percent likelihood of finding a match. African Americans comprise only 7 percent of the United States registry.
And, it is projected that by 2017 our likelihood of finding a match will only raise to 21 percent. Within the United States registry, the likelihood for finding a full match is higher for people of Mexican (37 percent), Chinese (41 percent), South Asian (33 percent), Hispanic Caribbean (40 percent) and Native American (52 percent) ancestry than for African Americans, but still significantly lower than the likelihood for whites.
Finding a non-related full match is difficult if you are a person of color, especially people of mixed race origin. Having a 100 percent match is crucial in predicting positive outcomes post-transplant. While the Seattle Cancer Care Alliance has been searching for a match, today, I still do not have a full bone marrow donor match and am moving forward with an alternative stem cell transplant using donated umbilical cord blood. My transplant for using cord blood was in September.
This is why we are organizing a national bone marrow donation registry campaign. I want to make my cancer matter, so my great friends stepped in to make this happen. Our goal is to have 4,000 new people registered by this effort. We need people of all backgrounds to become potential matches to help people like me live.
I am a professor of sociology and teach about social stratification, inequality and racial outcomes in institutional processing. I research class and racial differences in criminal justice processing and outcomes. I am the daughter of a black and Filipino man, wife to a black man, sister to black men, and mother of a black son and daughter. I live in the United States and, as many of us know, understand the racial inequalities in our broader society. Many times I feel overwhelmed about the lack of ability to make institutional differences, be it in our systems of education, criminal justice and health care.
Yet, when it comes to bone marrow donation, and other blood products and organ donation, we can make a difference. We can, for ourselves, save ourselves. Becoming involved in donation empowers us in a way like no other to alleviate health care disparities.
You can learn a lot about my story and this campaign at teamalexes.com. We had bone marrow registries in five cities last fall — Seattle, Los Angeles, Houston, Washington, D.C., and New York.
Please consider signing up for the bone marrow registry. You can literally be a superhero and save someone’s life.
Dr. Alexes Harris is a professor of sociology at the University of Washington. This essay was originally published on her personal website.