Across so many parts of our lives, systemic racism continues to advance. Black Lives Matter must consistently battle the repugnant racism found in the American justice system — so horrific that we’ve been protesting for the last few weeks straight with no loss of momentum. The entire world is finally speaking up: ‘NO MORE!’
And Ciitizen stands with you.
Systemic racism exists not just in criminal justice but also voting, education, employment, (do I really need to list them all?)…but also in science. Yes, even in science, where we set out to extract the objective truth from raw data, systemic racism rears its ugly head anywhere humans are involved. Let me explain:
Ciitizen exists to help cancer and other quite sick patients collect and organize their health data to improve their own care, but we also encourage all our users to share their information for future research. As we’ve laid out in previous blog posts, the treatment path of one patient helps to inform the treatment path for others. Physicians use my data to hone in on what might work for you, or not. As Ciitizen scales to deliver our cloud archive filled with empirical and consented cancer histories, with gazillions of records minable for research, we will exponentially improve treatment options for all patients. This has been our mantra from day one.
Yet, our goal towards a comprehensive data set to improve outcomes for all global patients depends on the diversity of all patients, with a diversity of all cancers. Cancer comes in many variants, shapes and forms, and in many colors. Regrettably, we have omitted no patient group more directly than black patients. Let’s fix this.
Speaking with our long-term partner and advocate, Ricki Fairley, a triple breast cancer survivor and patient advocate, she explained that clinical trials don’t have enough data from black women to conduct deeper research into how breast cancer affects their specific physiology. “I’m starting a movement to help pharma understand that there are hundreds of different cancers but that black breast cancer stratifies the list even further,” she stated; “Our mortality rate is 42% higher than white women and black women under age 35 die at three times the rate. Unless you understand black physiology, you’re going to miss an entire arm of cancer research.”
The same holds true for genomic studies. A recent article in Oakland Magazine called “Black Genes Matter” revealed that less than 4% of participants in human gene studies are African American and that the data used is overwhelmingly from white patients. Expanding studies to include more data from black patients could solve some “long-standing puzzles” about diseases that affect black people disproportionately, but also suggests new pathways resulting in therapies for all patients, black and white, yellow and brown.
Every black patient’s data matters even more because we have so little of it. We need much more of it if we’re going to kill this $&%#@ thing called cancer. An article in the Pacfic Standard states that the inclusion of even small numbers of black Americans in genetic studies probably would have prevented misclassifications from researchers. Very few things in life are so straightforward win-win-wins; hey drug developers, are you listening?
Removing disparities in clinical research associated with skin color is how we eliminate the inequality in outcomes for black patients. Not only are black people more likely to die from breast cancer, they’re also more likely to have hypertension, strokes, and heart disease. Yet, a recent Nursing Journal study found that, despite obvious disparities in outcomes, black patients are “well underrepresented in clinical research.” Given the lack of data, it appears that finding answers to medical issues which unevenly impact the black community isn’t a priority for researchers. That’s not only bad science; it’s also bad business.
With quadrillions of people around the world spilling into the streets, demanding equality for the black community in our social sphere, Ciitizen is demanding the same equality in cancer research. In partnership with Ricki and others, we’re using our platform to empower black breast cancer patients to participate in research. By making it easy to collect, share and connect to research opportunities and clinical trials, we are increasing awareness and access by significantly reducing the burden of participating in research. We have been committed to working with fierce leaders like Ricki to “crack this nut” and end racial inequities in the medical world.
We must continue to do this in a way that is trustworthy and led by black patients, rectifying the dishonorable history of research abuses that have harmed black communities. At Ciitizen, we’ve pledged to actively bridge this gap.
We also look forward to highlighting the amazing work of our Advocacy Partner Network and showcasing the voices and experiences of this community. Join us in being a part of the solution to stamp out systemic racism in all its forms, including clinical research.
Chief Executive Officer
Are you a black breast cancer patient ready to join us in this movement? You can sign up for Ciitizen to take control of your medical records & explore research opportunities you are eligible for by visiting https://www.ciitizen.com/rickifairley/.
Want to get involved? Feel free to reach out to the team at firstname.lastname@example.org.