As a young mom, my son was diagnosed with asthma. When he was only a toddler, I discovered that his asthma medication, Albuterol, was significantly less effective for him than his white peers. Albuterol is used to prevent and treat wheezing and shortness of breath caused by asthma. It would allow my son to breathe more easily.
It was devastating, and honestly quite scary, for me to learn this treatment wasn’t providing the relief my son needed.
The ineffectiveness of my son’s asthma medication was due to lack of knowledge. I needed more information and more direction about medical systems and effective treatments.
We now know that his asthma medication is about 47% less effective for black people.
I needed information about my own medical history that may have helped us uncover this information about my son even sooner. As someone who was adopted, I didn’t know about my own medical history. If I had more insight into the health journeys of my family members, that would help me ask better informed questions and research specific conditions.
Within the black community, we know how hesitant or fearful our family members, friends, loved ones and colleagues may be of the health care systems. We’re often hesitant to seek education or treatment.
Black people are more likely to go undiagnosed, misdiagnosed, undertreated, or offered less advanced treatment options than white counterparts.
I fundamentally believe in changing the status quo. We want to change medical systems and how our community finds, discovers and takes advantage of ways to improve and maintain their health. We are dedicated to the black community, those of us who are often marginalized, forgotten, or treated as if they don’t matter.
I’m here to advocate for more diverse and inclusive medical professionals, services and treatments.
– Tiffany Whitlow, Co-Founder, NOWINCLUDED
Families just don’t seem to share matters, or history, related to health. For some, it only takes one journey to begin an evolution of change. For me, that was the case.
For years, I watched my mother endure the conditions of tuberculosis, a bacterial infection of the lungs that often requires a long series of treatments. The treatments intended to help resolve the condition did not seem to be helping. Despite those efforts, my mother was unable to overcome the disease and eventually passed away. With this loss, I was left with so many questions. Why didn’t these medications work? Why so many? These questions demanded answers that only research could offer.
It wasn’t until years later, after I did research, that I realized that my mother’s condition could have been managed better. If a pharmacogenomic evaluation had been conducted, using this genomic gauge could have been used to maximize the effectiveness of the medications. It’s uncertain if the evaluation would have changed the outcome, but possibility and potential placed me on yet another path.
I never knew my biological father, so I began efforts to locate him. I was successful, only to discover that my father had passed away from cancer the year before. Learning about my paternal family lead to major revelations. I discovered that every male on my father’s side of the family had passed away of some form of cancer. As a father of three sons of my own, this news immediately had me concerned. With this in mind, I continued my path of discovery.
Understanding genetics and genomics was the obvious key to improving the knowledge base of what we know about health history and medical treatments. Currently there is not enough consideration of genetic individuality when it comes to medication regimens. One drug does not fit all in these cases. Discovery is the path to making a difference.
For me, being one person driven to make a difference has created the possibility of great change where we all are now included.
– Del Smith, Co-Founder