Initiative seeks to create interventions to prevent kidney failure and improve access to kidney disease research, care for communities of color
King of Prussia, PA – March 9, 2021 – Today, NephCure Kidney International (NephCure) announced the formal launch of its Health Equity Initiative, focused on addressing access to research and care for diverse families living with chronic, protein-spilling kidney diseases, together with the Health Education Advocacy and Learning, Inc. (HEAL Collaborative) not-for-profit organization.
The goal of this initiative is to improve patient outcomes by identifying solutions to strengthen the participation of underrepresented individuals in the kidney disease patient and medical arena. The initial focus will be on kidney disease in Black Americans, given the prevalence of Chronic Kidney Disease (CKD) and Focal Segmental Glomerulosclerosis (FSGS) in this population. This initiative is made possible through grant support from Travere Therapeutics, a founding partner of the Health Equity Initiative. Additional support has been provided by Mallinckrodt Pharmaceuticals and other key partners.
“We are so eager to finally begin doing this important work,” said Joshua Tarnoff, NephCure CEO. “This community of patients has been neglected for too long. With so many new potential options available in trials, some specifically targeting genetic causes of kidney disease within Black communities, as well as the genetic testing now available to detect these variances, we now have a clear path forward to improve health outcomes for all patients.”
More than 1 in 7 adult Americans have some form of CKD. One of the most common and aggressive sub-types of CKD is FSGS, characterized by protein in the urine, kidney scarring, and having the potential to cause relatively rapid decline in kidney function. As there are currently no FDA-approved drugs for FSGS, patients may progress to kidney failure, dialysis, and kidney transplant.
CKD and FSGS disproportionally affect Black Americans at rates at least 4 times greater than White Americans. Black Americans comprise 13.2% of the United States population but represent more than 35% of all patients in the US receiving dialysis for kidney failure. In particular, a variation on the APOL1 gene often found in people of West African descent is thought to be associated with one of the most severe forms of kidney disease. Its presence indicates a significant reduction in already limited treatment options. Approximately one third of FSGS cases in the United States are thought to be associated with APOL1 variants.
A key partnership within the Health Equity Initiative will be led by HEAL Collaborative, a community-based organization that focuses on working with under-served minority populations on the availability of healthcare-related services, accessibility to emerging treatment options, and consequential community benefit impact.
“HEAL Collaborative’s vision of ‘Communities of Color are Healthy’ drives our mission: to develop healthy communities of color, we use our collaborative relationships, innovation, community action, and public advocacy,” said Howard Mosby, HEAL Collaborative co-founder and Treasurer.
“This partnership with NephCure Kidney International aligns with our organization’s goals to build collaborative networks nationally; to establish faith-based partnerships; to hold educational sessions on innovative healthcare solutions around chronic diseases affecting morbidity and mortality in communities of color; all in partnership with policymakers, faith leaders, and community advocates.”
During the 12-month pilot period of this initiative, HEAL Collaborative will engage faith-based community networks in Atlanta, GA and Chicago, IL to raise awareness of CKD and APOL1-related FSGS and provide opportunities to connect with patient advocates and disease specialists. NephCure will concurrently launch a marketing campaign to raise awareness of the genetic causes of kidney disease in people of African descent, provide patient-focused educational materials and guidance on seeking specialized care and gaining access to clinical trials, and strengthen outreach to nephrologists to aid in providing accurate and timely FSGS diagnoses.
“What makes this initiative different is our focus on creating action-oriented, meaningful, and measurable change in these communities in the near-term,” said Tarnoff. “We will take what we learn from this pilot period and expand our programs in the future to reach more at-risk individuals within communities of color.”
“We want to put interventions in place to reach people before they show up in the emergency room with kidney failure,” added Mosby. “We have said time and time again: No more dialysis. We must give people every opportunity to save their kidneys and remove dialysis from the conversation as a foregone conclusion.”
NephCure and HEAL Collaborative have appointed a steering committee of leaders with expertise in rare kidney disease research and care, government and local advocacy, and community-based engagement to guide the Health Equity Initiative.
Health Equity Steering Committee members include:
- Linda Goler Blount, MPH, Black Women’s Health Imperative
- Jason Cobb, MD, Emory University Division of Renal Medicine
- Roslyn Daniels, Black Health Matters
- Patrick O. Gee Sr., PhD, iAdvocate Inc.
- Keisha Gibson, MD, MPH, University of North Carolina
- Wanda H. Moore, JD, MEd, New Jersey Urban Peace Building Project
- Kevin Mott, NephCure Kidney International
- Quin Taylor, Tayloring Gratitude
- Melissa West, American Society of Nephrology
Both NephCure Kidney International and HEAL Collaborative are committed to long-term sustainable improvement in care for people of color living with kidney disease. This first step is one in a long series of programs and an iterative learning process, until we collectively see equal care for patients.
For partnership inquiries and to support this growing effort, please contact NephCure at research@NephCure.org.
About NephCure Kidney International
NephCure Kidney International’s mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now nearly 30 interventional drug trials for primary glomerular kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity. For more information, please visit www.NephCure.org.
About HEAL Collaborative
HEAL is a not-for-profit community-based organization that focuses on Educating, Informing, Advocating and Engaging under-served minority populations on the availability of healthcare-related services, accessibility to emerging treatment options, and consequential community benefit impact. For more information, please visit www.HEALCollaborative.org.
Lauren Eva, Director of Marketing & Communications