AST Holds APOL1 Consensus Building Meeting

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The American Society of Transplantation (AST) held an APOL1 Consensus Building Meeting December 17-18, 2015 to bring experts in the field together to address the potential impact of the APOL1 gene variants on organ donation and transplantation.

APOL1 Consensus Building Meeting

"This meeting represents the AST’s commitment to advancing the field and improving patient care by addressing this disparity carefully and thoughtfully, to ensure positive results for both donors and recipients."

Sponsored by Novartis, the AST's APOL1 Consensus Building Meeting meeting included nationally recognized experts in kidney disease, transplantation, and public policy. A number of governmental stakeholders participated in the meeting, including key leaders from HRSA, NIAID, NIDDK, NIMHD, AOPO, and UNOS.

Thomas Dorney, Senior Healthcare Advisor from the Office of Congressman John Lewis (D-GA), provided the group with a federal healthcare public policy and biomedical research funding update.

The risk of kidney failure among African Americans is higher than non-African Americans for both native and transplanted kidneys: the estimate for cumulative lifetime risk of kidney failure for African Americans is 8% compared to 2% in Caucasians. While some of the excess risk in African Americans is associated with traditional factors that disproportionately affect African Americans, such as obesity, smoking, diabetes, and access to care, an additional genetic component has long been suspected. In a landmark paper from 2010, individuals with high-risk variants of the APOL1 gene were first identified as having a significantly higher risk of renal failure. Subjects with two high-risk APOL1 gene variants were associated with a more than seven-fold risk of kidney failure compared with those with non-mutant APOL1 genes.

The high-risk variants of APOL1 are found in 13% of African Americans. Although individuals with APOL1 high-risk variants are at greater risk of renal failure, causality between these variants and renal disease has not been established. Meeting participants agreed that additional research is needed to identify what scientists refer to as the "second hit" that leads to kidney disease in those with the APOL1 gene variant.

APOL1 Consensus Building Meeting attendees focused on next steps for learning more about the impact of APOL1 on organ donation and transplantation. Participants discussed how to develop potential guidelines related to testing for the presence of APOL1 variants, how to counsel living donors and transplant recipients about the risks and benefits associated with the APOL1 variants, and how to establish priorities for future research that will better define these genetic mutations and their impact on transplantation.

"Data related to the APOL1 gene may impact the distribution and accessibility of organs to underserved groups," said Kenneth Newell, MD, PhD, AST Past President. "This meeting represents the AST's commitment to advancing the field and improving patient care by addressing this disparity carefully and thoughtfully, to ensure positive results for both donors and recipients."

Meanwhile, the disparity between those awaiting transplants and the number of available organs is increasing, and this imbalance is greatest among the African American community. Data related to the APOL1 gene raises important questions for the transplant community about how to factor information about this gene into decisions about which patients can safely donate and receive organs without decreasing access to transplantation for those that need it most.

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Cate Girone
@AST_info
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