We are deeply horrified by the recent violent deaths of George Floyd in Minnesota and Breonna Taylor in Kentucky. They are the latest in a vast chain of Black men, women, and children in the United States whose lives have been tragically and wrongfully cut short.
Their lives mattered.
We stand in solidarity with those fighting for justice, peace, and equity for Black people and other communities of color in this country.
Systemic racism and deeply entrenched inequalities have plagued our country since even before its founding. Our healthcare system continues to deny equitable access to research and care that could significantly improve the lives of Black people and other people of color at all walks of life.1, 2, 3, 4, 5
At NephCure, we are focused on providing support and education to all who are affected by chronic, rare, and progressive protein-spilling kidney diseases, in addition to pushing forward research to better treat and cure these diseases.
Black Americans are disproportionately affected by chronic kidney disease, and uniquely affected by an aggressive form of a protein-spilling kidney disease called Focal Segmental Glomerulosclerosis (FSGS).6, 7 Working to improve the options and availability of treatments for Black individuals affected by kidney disease falls squarely within the scope of our organization.
NephCure serves ALL people who are affected by protein-spilling kidney diseases, but we know we can do better for our communities of color.
We have been working with some collaborators over the past few months on a Health Equity project, focused on increasing diversity in this field, and we’re excited to share more about that soon. But we recognize that this moment is not about us. With that in mind, we are providing space and time throughout this month (and beyond) specifically aimed at highlighting Black voices within our community.
There is a great deal of work to be done, and we are dedicated to learning, growing, and constantly improving. If you are so inclined, we welcome your feedback on how we’re doing in this regard.
We are not so audacious to expect that we can end the consequences of systemic inequities that have negatively shaped life for Black people in the United States for hundreds of years. But we believe we can make change in our community. And we will.
1 Hamel LM et al., (2016). Barriers to clinical trial enrollment in racial and ethnic minority patients with Cancer. Cancer Control. 2016 Oct; 23(4): 327–337. DOI: 10.1177/107327481602300404 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5131730/
2US Food and Drug Administration. (2017, February 13). Drug Trials Snapshots Summary Report (2015 and 2016) https://www.fda.gov/drugs/drug-approvals-and-databases/drug-trials-snapshots-summary-report-2015-and-2016
3D. K. Ginther et al., (2011). Race, ethnicity, and NIH research awards. Science. 333, 1015–1019 (2011). DOI: 10.1126/science.1196783 https://science.sciencemag.org/content/333/6045/1015.full
4The Commonwealth Fund. (2008, April 1). Do Primary Care Physicians Treating Minority Patients Report Problems Delivering High-Quality Care? https://www.commonwealthfund.org/publications/journal-article/2008/apr/do-primary-care-physicians-treating-minority-patients-report
5Hayanga, AJ et al., (2009). Residential Segregation and Access to Surgical Care by Minority Populations in US Counties. Journal of the American College of Surgeons, 208(6), 1017-1022. DOI: https://doi.org/10.1016/j.jamcollsurg.2009.01.047 https://www.journalacs.org/article/S1072-7515%2809%2900207-5/abstract
6National Institute of Diabetes and Digestive and Kidney Diseases. Race, Ethnicity, & Kidney Disease. Retrieved June 8, 2020, from https://www.niddk.nih.gov/health-information/kidney-disease/race-ethnicity
7Rosenberg AZ, Kopp JB (2017). Focal segmental glomerulosclerosis. Clin J Am Soc Nephrol 2017;12:502–17.doi:10.2215/CJN.05960616 https://cjasn.asnjournals.org/content/12/3/502